# Andrew - born at 29 weeks!



## Marleysgirl

Hi'y'all

Some of you may remember that I posted in here a couple of weeks ago with questions about potentially having a preemie baby ... well he's been born!

A week after having steroid injections in case of early delivery, I was due to return to hospital for my daily u/s scan when I had a morning of reduced movement, so I actually went in earlier than planned that day, suitcase in DH's hand, suspecting that this might be it.

They scanned me, and although baby's heartbeat was strong, they agreed that he wasn't moving much. Checking the doppler, my placental bloodflow had deteriorated to a potentially dangerous level - the choice was to deliver the baby as soon as possible, or risk losing him in the womb. Easy decision really. Seven hours later (they had to wait because I'd had lunch!), Andrew was delivered by caesarian section, weighing just 1lb 6oz, even less than the expected.

DH saw him in the theatre as they were intubating etc, and I was taken to see him in the NeoNatal unit (SCBU) the next morning, when he was stable.

Since then, his blood sugars have been up and down so he's had some insulin; they're treating him with antibiotics against infection; he was jaundiced for a day so received UVlight treatment; and he's had a couple of blood transfusions to raise his platelet & Hg levels. We've had no "major panics" yet, although headscans have revealed a couple of pre-delivery bleeds in the skull (between brain & skull) that they are monitoring, as yet we & the docs don't know what damage this may have done to the underlying brain areas.

But on the good side :happydance: Andrew came off the ventilator about 4 days ago (less than a week old), and yesterday he spent some time off the Cpap system too, as his lungs are so strong, thanks to those steroid injections.

He is still absolutely tiny, weighing 1lb 9oz yesterday - he's putting on weight now as he's on my EBM (moooooooo!). And everybody in the Unit is impressed with his progress, he's proving to be a little toughie.


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## sophie c

wow!!! congratulations to you hun!!!

and well done to your little fighter!!!!
xxxxxx


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## nkbapbt

Congrats!!! 

Welcome to the world baby Andrew!!

Already CPap, that's awesome.

Are his bleeds called IVH by any chance? Lakai had a brain bleed as well, but his development and everything have so far not been affected by it. 

Congrats again!! I cannot wait to see pictures!


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## Mumof42009

Congrats hun i thought you hadnt been around much. Im so glad Andrew is doing so well he will soon pile on the pounds and be home where he belongs x


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## Linzi

Congrats :) You have a little fighter there by the sounds of it! x


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## 3 girlies

congratulations, he sounds like a little (teeny weeny infact) fighter! Great that hes putting on weight. xxx


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## amazed

Aww congrats hun xx


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## Jemma_x

Congrats, he sounds like a fighter x


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## bumpsmum

congrats, Andrew sounds like a wee toughie he'll surprise you how quick he comes on. Take care x x


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## DonnaBallona

Congratulations on the birth of baby Andrew! welcome to the world little one!

Hope he continues to get stronger as beautifully as he is, he has done sooooooo well to have time off of CPAP already. He's definatly a fighter!

Hang in there Chick-we've all been where you are now, right at the start of your SCBU journey-but you'll get there, just like we have with our babies.

Many congratulations again, and I look forward to following your journey.

Take care xx


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## grumpymoo

how wonderful he is here and is now safe and sound and being cared for.
I hope you are feeling ok after your experience:).

Congratulations!:happydance:


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## DiddyDons

Aw Congrats x x x


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## embojet

Congrats, he sounds sooo strong!


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## dannigizmo

congrats on your wee bub!! Wishing yous all the best and he sounds like a little toughie!! xx


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## dippy dee

congrats hun he really sounds like a fighter and i can't wait to see pics of your tiny man xx


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## Marleysgirl

BIG NEWS!!!!
:happydance: :happydance: :happydance: :happydance: :happydance:​
Andrew was promoted from the NeoNatal ICU to the High-Dependency room last night, he's doing that well!!!!

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/DSC01503.jpg


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## bumpsmum

yeahhhhh for Andrew thats fantastic news, he's doing so well and gonna be a real heartbreaker with that cheeky wee gorgeous face x


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## grumpymoo

wow, thats great and he is a little sweetie! :happydance:


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## DonnaBallona

awwwwwwwwww HULLO little tiny Andrew! :hi:

Thats fab news he's been promoted, its a fantastic feeling isnt it! Well done you. Upwards and Onwards!

I love his tufty hair at the back-ahhh :cloud9: make sure you get a few prints taken of his teeny hands and feet-usually the nurses will help you with that. They soon grow! :cloud9:

Congratulations again! xx


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## Mumof42009

wow he is doing well, he is so cute hun. You must be very proud :hugs:


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## Eightiesbirdx

Thats wonderful news, its great to hear he's doing great :)

Congratulations xx


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## Bec L

Congratulations!! Hope it's not long before your little fighter is home with you all xx


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## nkbapbt

Awe my goodness..he is PERFECT! And sooo strong. Way to go little fighter!!


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## premmiemum123

Congratulations...he is so beautiful what a fantastic photo. He is doing so well, my little girl was ventilated for 20 days and was slightly bigger than Andrew so he is doing really well in comparison...go Andrew!!!


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## Foogirl

Absolutely gorgeous. Well done to you all. Here's hoping the next wee while will fly by and you'll have him home soon.:thumbup:


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## dippy dee

aaaaaaawwwwwwwwwww what a cutie hun he is beautiful xx


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## lou1979

He is just amazing!! true fighter bless him!

Congrats huni xxxxxxxx


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## Marleysgirl

Reading Lakai's story made me realise I hadn't updated this thread ...

Andrew is doing just fine. He was 850g at the last weigh-in (three days ago) and is now being tube-fed 7ml/hr of my EBM, tolerating it well. We had a small setback with his breathing when they decided to extend his time off Cpap on an adhoc basis to 14hrs - he got overtired, and only managed occasional single hours off for the next couple of days. But he's now on a cycle of 8 hours off, 4 hours on, which seems to suit him - only one non-self-corrected desat last night. 

We haven't cuddled Andrew much in this last week because he's either been grizzly, freshly re-Cpap'd, or connected to an IV (antibiotics stopped midweek, then he had a blood transfusion due to low Hg levels) but I'm hoping that we'll get a good cuddle session this afternoon. Daddy got to hold him in the incubator yesterday while the nurse changed his bedding below his hands. 

I get the less interesting tasks like nappy changes, but that's because he projectile poo'd all over Daddy's hands, arms and the incubator earlier this week! 

We finally got confirmation this week that the chromosome tests came back as negative for Downs/Turner, which was a relief after our blood test stats (1 in 5). So it looks like Andrew is just small (IUGR) with no underlying reason. I must ask the Consultant about whether they've done any tests that could show some of the problems that others mention (like ROP) - the only thing we know about is the old cranial bleed, which is reducing in size, and we don't yet know about any brain damage underlying that. 

I'll try and get more photos uploaded later.


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## butrfly

congratulations for the move, andrew! and welcome to the world!


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## Marleysgirl

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/Phone1209002.jpg

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/Phone1209001.jpg


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## MandaAnda

He's lovely and looks so sweet!

For the ROP screening, he'll likely be visited by the ophthalmologist from around the time he's 4 weeks old; then they'll review him 1-3 weekly, depending on the results each time. He'll have to have eyedrops in beforehand each time so the ophthalmologist can see to the back of his eyes. The nurses should be fine with letting you know when it's going to be done so that you can be there if you want.


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## Marleysgirl

Thanks for that info, Manda, he'll be 4wks this Wednesday so I'll keep an eye out for this kind of activity, and ask the Consultant about this and hearing tests etc.


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## MandaAnda

Marleysgirl said:


> Thanks for that info, Manda, he'll be 4wks this Wednesday so I'll keep an eye out for this kind of activity, and ask the Consultant about this and hearing tests etc.

No problem at all. :thumbup:

The hearing screening will be around the end of his hospital stay. With term/well babies that only ever go to postnatal ward, they try to do the hearing screening (a national thing) before they go home and send outpatient appointments if they can't catch them. As an early baby, Andrew will need to meet certain criteria before they'll do it, but they _will_ do it. Preferably, he needs to be in air and be in a normal cot. There's other things that can happen over a course of time on a neonatal unit that affects when/how they do the test, so that's why they like to wait until nearly home time. Hope that helps.


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## prem2pram

Congratulations on the safe arrival of Andrew, can't wait to see pictures. Before you know it he will have gained enough weight and be on his way home. x


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## Marleysgirl

Weight update - Andrew is now 933g (2lb 1oz), which means he's put on almost three ounces in the last four days!!!!!


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## nkbapbt

Way to go Andrew!! Wonderful new pictures. I know I asked before but is his head bleed called an IVH? Is it in the ventricles of his brain?


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## Marleysgirl

nkbapbt said:


> Way to go Andrew!! Wonderful new pictures. I know I asked before but is his head bleed called an IVH? Is it in the ventricles of his brain?

I'm not sure what the bleed is officially called, I've never seen it written down! It's on the side of his head, between his brain and the soft skull. They're having to wait until it goes (absorption of the old blood) to see whether it's on the skull or the brain side of the membrane - if it's on the side of the brain then it may have caused some damage to the brain in that area.


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## DonnaBallona

Thats brilliant news. amd FABULOUS new pictures! Such alot of hair! The second one made me well up as I just felt so much for you. 

Brooke had IUGR and they couldnt work out what was wrong with her at all. she's had MILLIONS of tests, you name it, she's had it done-most recently and MRI.

They ALL came back negative-there's nothing wrong with her at all!! So basically, what Im trying to say is-there doesnt always have to be anything wrong. My LO has proved all the doctors wrong every single time and your little Andrew CAN do it too.

He's doing amazingly well-hang in there! he's sweet as pie :cloud9:


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## premmiemum123

DonnaBallona said:


> Thats brilliant news. amd FABULOUS new pictures! Such alot of hair! The second one made me well up as I just felt so much for you.
> 
> Brooke had IUGR and they couldnt work out what was wrong with her at all. she's had MILLIONS of tests, you name it, she's had it done-most recently and MRI.
> 
> They ALL came back negative-there's nothing wrong with her at all!! So basically, what Im trying to say is-there doesnt always have to be anything wrong. My LO has proved all the doctors wrong every single time and your little Andrew CAN do it too.
> 
> He's doing amazingly well-hang in there! he's sweet as pie :cloud9:



I agree...the doctors kept telling me Emily had a heart murmur which may have caused her desats, she had an Echo scan, no heart murmur. Then they said she had low haemoglobin and that may be causing her desats, they did a blood test, haemo was fine. Don't get me wrong the doctors do an amazing job but sometimes they do get it wrong...
I am sure Andrew will defy them as well...go Andrew! Well done with the weight gain...he is doing so well...x


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## Marleysgirl

We had a lovely SC nurse today who is really into "kangaroo care" (she did her dissertation on the subject) and who was amazed to find out that we'd only had normal cuddles, no skin-to-skin sessions so far .... So I got my first skin-to-skin cuddle with Andrew this afternoon!!! And it was amazing, he fitted so perfectly against me and just settled into the moment. I'm blown away.


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## DonnaBallona

Kangaroo cuddles are THE BEST EVER!!! they smell soooo good snuggled up against you dont they!!

This is Brooke after having her first Kangaroo cuddles with me. . .Id just got her out of my nightie. Look how chilled out she looks! I LOVE LOVE LOVE this pic :cloud9:
https://i271.photobucket.com/albums/jj150/2Donna1/SDC10077.jpg

You are such a lucky lady having such a perfect LO. And know one of the best things? When you get him out of hospital, people will say to you "oh, enjoy him being tiny, newborn doesnt last long!" They're all wrong, thats one of the positive points of having a preemie, they're teeny for longer!
Brooke's been the size of a newborn for 7 months now :lol: 

Enjoy x x


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## Marleysgirl

DonnaBallona said:


> Kangaroo cuddles are THE BEST EVER!!! they smell soooo good snuggled up against you dont they!!
> 
> This is Brooke after having her first Kangaroo cuddles with me. . .Id just got her out of my nightie. Look how chilled out she looks! I LOVE LOVE LOVE this pic :cloud9:
> [/IMG]
> 
> You are such a lucky lady having such a perfect LO. And know one of the best things? When you get him out of hospital, people will say to you "oh, enjoy him being tiny, newborn doesnt last long!" They're all wrong, thats one of the positive points of having a preemie, they're teeny for longer!
> Brooke's been the size of a newborn for 7 months now :lol:
> 
> Enjoy x x

Donna, how big was Brooke when you were allowed to take her home? It's difficult for me to get a handle on this, given that all Andrew appears to have is IUGR and no other problems - are they likely to let him home early (as if he was born at 36+ wks), or will they keep him in as long as possible? Presuming he masters his breathing of course!

Good luck with Baby No. 2 :happydance:


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## DonnaBallona

Marleysgirl said:


> Brooke came out of hopsital at 3lb 7oz. :cloud9: I begged and begged and begged them to let me take her home after about a month and she finally was released at week 5. Brooke was the smallest baby the unit had ever discharged. :shock:
> 
> She was in an incubator until 4 weeks old, and then I caught the Pead doing his rounds and I asked him if he would try Brooke out at least in a Kan-med. I was adament she would be fine. They had reduced the temperature right down in the incubator, she had no oxygen and she held her own temperature. He wasnt convinced and it took me two days of begging to let him try her.
> 
> She was moved out of the incubator into the Kan-Med at 4+2, and once again she suprised them. She was too warm in it, so they kept slowly reducing the temperature down until it was at normal level. Then I started begging them to try her in an open cot. :blush:
> 
> She went into an Open cot at 4+4, then at 4+5 we were allowed to room in for 3 nights.
> 
> She came home on March 5th :cloud9: She was at 37 weeks by this point.
> 
> Im still suprised they let her home that small, and I wont lie, I was terrified. I think it had alot to do with the fact that she was feeding well, although only putting on 1 oz every 4 days! :dohh: we had the Community Nurse from SCBU come out every 2 days to see her, and I had to take her back to SCBU for a check up after 5 days at home. They told me if she hadnt gained weight the they would readmit her. Well, I fed her up good'n'proper that week!! Although Ill admit, It was harder work than I envisaged-having her home so small.
> 
> Brooke was born at 32 weeks though bird-although they think she stopped growing at around 28 weeks. Andrew will show you when he is ready for the big wide world :flower: I hope its really soon for you.
> 
> How old is he now-how is his weight, and feeding? xx
> 
> ETA: The SCBU unti generally tell you to aim to be relased on their due date. I think Brooke and I got EXTREMELY lucky :winkwink:


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## premmiemum123

Marleysgirl said:


> We had a lovely SC nurse today who is really into "kangaroo care" (she did her dissertation on the subject) and who was amazed to find out that we'd only had normal cuddles, no skin-to-skin sessions so far .... So I got my first skin-to-skin cuddle with Andrew this afternoon!!! And it was amazing, he fitted so perfectly against me and just settled into the moment. I'm blown away.

Kangeroo care is the best, it is so wonderful feeling your LO against your bare skin...you will feel sleepy and so contented. They fit perfectly against your skin as they were once part of you. The perfect fit as you say. 
I am so pleased you are having kangeroo care...make sure you have lots, insist on it if they don't offer it, Andrew is your LO and needs that contact, they won't be offended if you become a bit demanding, just repeat the SC nurses dissertation. I think Emily benefitted from kangeroo care hugely which is why her progress was so good for a 26 week old premmie. 
Even now at home Emily snuggles onto my chest and falls straight asleep, sometimes when she is grumpy it is the best way to settle her. 

Enjoy lots more cuddles...x


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## avabear73

Congrats on Andrew's progress - that's very impressive weight gain, what a trooper! :thumbup:

Finlay got home 3 days before 40 weeks, I think that's a fairly common rule of thumb. So pleased to hear that Andrew is doing well, and I agree, push for as many cuddles as they will let you have :) That first skin-to-skin is always incredibly special though, it's one of the best experiences of my life :cloud9: It's odd, we were never offered one, until the nurse who does a lot of the BF counselling came in, and she offered right away. :hugs: I think in general the nurses are rushed off their feet and if it's not a passion/interest of theirs, they get sidetracked with other stuff, so it often comes down to who is on when you go in.


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## DiddyDons

hes looking so gorgeous and sounds like a right little fighter :D Keep up the good work little man x


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## Marleysgirl

DonnaBallona said:


> Brooke was born at 32 weeks though bird-although they think she stopped growing at around 28 weeks. Andrew will show you when he is ready for the big wide world :flower: I hope its really soon for you.
> 
> How old is he now-how is his weight, and feeding? xx

Andrew will be 4 weeks tomorrow (was born at 29wks, about the size of a 25wk-old), now weighs 2lb 1oz, and is currently being fed 8ml EBM per hour.

It's still early days for him, he's on Cpap and being tube-fed. I'm presuming that they won't release him until he's breathing unassisted or with low-flow oxygen, and until he can breastfeed. So I know I'm jumping the gun with my enthusiasm to get him home! But these thoughts keep me going :hugs: And the nurse thinks he turned his head on his own today when lying on his tummy :)

I'm not ready to have him home yet anyway - they're still trying to decide what to do about my non-healing c/section wound :wacko:


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## Foogirl

Marleysgirl said:


> Donna, how big was Brooke when you were allowed to take her home? It's difficult for me to get a handle on this, given that all Andrew appears to have is IUGR and no other problems - are they likely to let him home early (as if he was born at 36+ wks), or will they keep him in as long as possible? Presuming he masters his breathing of course!

One of the best pieces of advice I was given was, stop worrying about when they will get home. If you think about it and ask every few days, it seems to go much more slowly. Enjoy being with him and doing the care and the kangaroo cuddles, the time will pass soon enough. I was doubtful about it, but it really did go alot quicker when I just concentrated on getting myself into the routine and the mindset of being at the hospital and giving Abby what she needed when I was there. I also concentrated on getting myself healed (my wound kept leaking too!) and getting her room and everything ready. It gave me some purpose. Take plenty of baths - you don't know when you'll next get the chance once he is home!

They wouldn't even give us an indication, because every baby is different. For us we knew it was all down to her feeding. As soon as she was able to feed without the tube, it was only days whilst they monitored her weight. After 3 days of her putting on regular weight, they prepared us for her coming home. It was going to be a week from then but in the end it was only a couple of days. She was 11 weeks early, 3lbs 7oz. When she got out it was 6 and a half weeks later and she was just over 6lbs.

ps...he is gorgeous.


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## Dona

Hey Hun, 

Archie came home 4 days after his due date. He was on o2 right up to 39+2 weeks gestation. He was born 13 weeks early and weighed 2lb 6oz. We knew of a little baby girl that was born at 34 weeks and weighed 2lb 11oz. She was in for 4 weeks as she only needed to establish feeding - no breathing issues. 

I would aim for his due date and anything before that is a bonus. 

Andrew is a wee stunner, I bet he makes his Mummy and Daddy so proud of what he's achieved already since the day he was born. :cloud9::cloud9:

Keep us posted with more pictures! 

Dona and Archie xx


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## nkbapbt

^ I couldn't agree more with that!


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## Amyre

How amazing. He is so strong & absolutely beautiful. You are such a lucky mom.


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## Marleysgirl

Woohoo - I'm now Mum to a bag of sugar! Andrew weighed in at almost a kilogram this morning - 2lb 3oz :happydance:


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## jem_5500

glad he is doing so well sweety xx


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## bumpsmum

Go Andrew thats fantastic x


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## Marleysgirl

Two bits of news from today - firstly, as Andrew's weight has increased, so has his EBM, which is now up to 8.5ml/hr! And secondly, he had his first screening for ROP and nothing was found at this point, though I'm told they will re-screen regularly for the next few weeks.


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## tillymum

Hi Marley.
Congrats on the safe arrival of Andrew, just been reading your thread and he sounds like a real little fighter. He's so teeny tiny but so perfect too.
xxx


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## avabear73

More good news from Andrew today - excellent. He's such a little star :hugs:


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## Marleysgirl

Andrew has appeared to be struggling with his 4on/4off Cpap routine for the last two days - it transpires that the Docs decreased his caffeine & salt supplements, which he obviously wasn't ready for. They've now re-increased the dose, and Andrew is more settled again (less de-sats, and no bradys last night).

At last night's weigh-in (sounds like a boxer, mind you, looks like a boxer too!) Andrew had put on another 106g to now weight 1.1 kg (2lb 6.5oz), which is an increase of 6 ounces in one week! It's good to see that he's now fattening up at roughly the speed he would in the womb. Definitely no need to get him <3lb clothing!!!


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## dippy dee

aww hun is is doing so well and it must be super milk he is on putting all that weight on.
I'm glad they found out the reason for the desats and bradies.
Big hugs to you all xx


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## avabear73

It's all that EBM Marleys - it's great stuff! Glad he's stabilised again and really good to hear he's progressing so well :hugs:


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## Marleysgirl

As expected, they've increased his EBM again, now 9.5 ml/hr. He consumes in 6 hours what I produce in 4, so he's catching me up! Good job there's around 5 litres in the freezer!


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## premmiemum123

Hi Marleysgirl, 4 hours on and 4 hours off is very good considering he is just over a kilo. They took Emily off caffeine too early so she kept desating down to 30 and the odd brady. That caffeine is magic stuff.

He will get there. They go at their own pace and when they are ready they will let you know. Once Emily started having long stretches off CPAP she started to fight it when it went back on so one day they left her off for 24 hours - scared the liviing hell out of me but she loved it - no more cap on her nose. You will get there soon. It all happens so quickly, like the weight gain, before you know it he will be in 4lb clothes and you will ask where has that lovely skinny little tyke gone. 

Are you keeping a diary? A written one I mean not online?

x


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## Marleysgirl

"Written"? As in, not online? I don't do anything that's not online!!! :rofl: I've got three different progress threads on two different website forums (fora?) so I've got quite a good record of what's happened so far. 

Andrew's now on 6 hours off Cpap, 4 hours on, and there's no change to his de-sats. Mind you, he still has almost as many when he's on Cpap!! He hates having the nose-piece & hat put back on, fights against it with his hands. 

Do you mind me asking what weight Emily was when born? Andrew was only 635g as he had IUGR - there's another baby in the same ward who was born at 25 weeks, but she was 800g at birth. I think it's his size, rather than his prematurity, that's behind his slow progress with breathing.


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## Marleysgirl

whoops, duplicate post!


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## sherryberry79

Hi Marleysgirl,

I'm so happy to hear ur lil one is doing so brilliantly. I had our baby girl Amelia on Aug 3rd at 26+3 and she was 620g, small for her gestation as she was not getting the nutrients she needed from the placenta due to my developing pre-eclampsia. She is doing well too, but she is having problems with her lungs and although she was recently off the ventilator and on bipap/cpap she is back on the ventilator again now. Doctors say she will get there in her own time though.

Sounds like your son is doing so well, and his weight gain is great, hope he continues to go from strength to strength.


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## Marleysgirl

Hi Sherry and thanks for your post - good luck and cuddly hugs to Amelia! How much does she weigh now? (Do you have a thread on here?) 

ETA - just spotted that you're in Stockport! Is she in Stepping Hill (not sure what they have as NeoNatal facilities) or up in St Mary's?

I'm guessing that you had no warning about her early birth, did you have an emergency c/section? I did, and ended up pretty badly bruised, they say it was because Andrew was so small, they had to dig in to get him! 

We were very lucky in having a wee bit of notice that Andrew would need early delivery, so at 28wks I was injected with steroids to help develop his lungs (he came a week later). This definitely helped with his breathing, so he progressed pretty quickly off the ventilator, though is taking his time with Cpap.


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## premmiemum123

Hi Marleysgirl, Emily was 932g when she was born and dropped to 850g so she was quite big for her gestation, however that did not stop her from having serious breathing problems because her lungs were so immature. Weight does play a part but it is not a major factor. Maturity is. Apparently in terms of maturity, there is a huge difference between a 26 weeker and a 28 weeker, so you have a head start. Emiily was ventilated for 24 hours then put onto CPAP in air (21% oxygen). In hindsight I wonder if she was taken off the ventilator too early as she would have massive desats and bradys. She would desat to zero even at 32 weeks, she scared the life out of the nurses, this improved slightly to 30 percent and she was still having bradys at 36 weeks when they say they should grow out of them. Each baby is different and Emily was just slow at learning to breathe, at times I felt they pushed her too hard when she was not ready. They took her off caffeine too early so that was part of the reason why she was desating so low and required Oxygen on many occasions. Another reason why she struggled was reflux, sometimes when the pain was so bad she would hold her breathe and then forget to how to breathe again which I believe is quite common for babies with reflux to do, espeically extremely premature babies. 
We got there in the end.
Andrew has maturity on his side those extra weeks make all the difference, also you were lucky to get the steriod injections, they are worth their weight in gold, I had two and thank god I did even though when Emily was born she was not breathing, once resuscitated she was fine.

Now she is home she still has the odd occasion where she will choke, hold her breath and then you have to slap her on the back to make her breathe. It usually happens when feeding. This doesn't bother me at all and she will grow out of it. 

Please don't worry about the desats, it is normal and he will grow out of it as his lungs mature. I focussed on it and made it a big deal for me on hindsight it was part of Emily growing up. I know it is hard but you will get there...x


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## sherryberry79

Hi Marleysgirl,

Yes, I live in Stockport, Amelia was born at Stepping Hill but was transferred to St Mary's very quickly. I had to stay at Stepping Hill after the birth for six days, that was really hard, but then I got transferred to St Mary's too so it was much easier. Is Andrew in St Mary's too? 

We had absolutely no warning Millie ( we call her that for short) would be putting in an earler than expected appearence. I did not feel ill at all, but noticed she was not moving as much as she had been so we went to Stepping Hill hoping to be re-assured, which we were at first by hearing the heartbeat, then they took my BP and things really kicked off from there. We went to the hospital after lunch and Millie was born by emergency C-section at 17:54. They only had time to administer one injection to help her lungs. Thank goodness we went to the hospital when we did, as the consultant said that if we had left it until the same time the next day it would have been too late for both of us! 

I was quite badly bruised after the op. I am very squeamish and a total wimp so I didn't look at the wound for as long as possible! The bruising is much better now but the incision site feels quite rough and it is still quite numb in places. I have read that the feeling of numbness can last for a long time though.


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## Marleysgirl

sherryberry79 said:


> Yes, I live in Stockport, Amelia was born at Stepping Hill but was transferred to St Mary's very quickly. I had to stay at Stepping Hill after the birth for six days, that was really hard, but then I got transferred to St Mary's too so it was much easier. Is Andrew in St Mary's too?

Yes - we're in Room 3. I'm guessing with Millie on ventilator she's probably still in one of the NICU rooms (Andrew was promoted to High Dep when he came off the vent for good). We visit every afternoon between 2pm & 4pm, if you're there at that time, come and look for us! Sometimes these things are easier if you have someone else going through the same situation.



> but noticed she was not moving as much as she had been ... Thank goodness we went to the hospital when we did, as the consultant said that if we had left it until the same time the next day it would have been too late for both of us!

We were due for an u/s scan on the placenta about 3pm on the Wednesday afternoon, but went up earlier (noon) due to reduced movement, and the consultant scanned us on arrival. Andrew's heartbeat was still strong but his movement "sluggish" (turned out this was because of a cranial bleed); but the consultant also said that Andrew would only survive up to one more week inside me, and we could lose him at any time without realising. We decided to let them carry out the c/section that day as he was better out than in.



> I was quite badly bruised after the op. I am very squeamish ...

You don't want to hear about mine then! Let's just say, I'm not completely healed ....


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## sherryberry79

Wow, Amelia is in room four so her and Andrew are next door neighbours!! We tend to go a little earlier, usually around 11ish, but sometimes we get there a little later if we are busy. We will look out for you though, it would be good to talk to some other parents who are going through the same thing as you say. 

Marion was looking after Millie last night and ahe said that during the night her ventilation tube dislodged itself so the doctor was called to replace it. The first tube was removed from her mouth and before she could insert the second Millie had stuck her thumb in her mouth and was sucking away on it.........wish I had been there to see it. Marion said it was so cute she told all the nurses about it at handover! The staff on the unit are absolutely fantastic aren't they!?

Great to hear about Andrew, he sounds like he is a big strong boy now!


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## dippy dee

hi marleysgirl i'm glad to hear andrew is doing so well and that he now has a little friend next door, i am so glad you and sherryberry have found each other and i guess you will be a great support to each other xx


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## Foogirl

I love this thread. I always check to see how it is all going - it is like waiting for the next episode of 'stenders - except this is far more exciting to hear what is going on and now we have a new baby to see the amazing progress of! :thumbup: 

Well done Andrew and Millie for doing so well.:hugs:


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## Marleysgirl

sherryberry79 said:


> Wow, Amelia is in room four so her and Andrew are next door neighbours!! We tend to go a little earlier, usually around 11ish, but sometimes we get there a little later if we are busy.

If you're still there at 2pm, come look for me (Rm 3, 2nd baby on right - the tiny one!). I heard there was another tiny baby on the unit, as Andrew is only the "second smallest" :winkwink: I thought it was hard when we were in the ICU room as all the babies there needed support; but I'm finding it hard in the Hi-Dep room now, as I'm beginning to see babies go home, and Andrew's still in ... probably for another 5-6 weeks till his due date.



> _Marion was looking after Millie last night and ahe said that during the night her ventilation tube dislodged itself so the doctor was called to replace it. The first tube was removed from her mouth and before she could insert the second Millie had stuck her thumb in her mouth and was sucking away on it........_

:happydance: Sucking reflex kicked in :happydance: Still waiting for Andrew to show signs of this - his fingers wander to his mouth, but then either disappear up his nostrils (yeuch!) or pull his nasal cannula (nose prongs) out - he did that six times yesterday in two hours, I think he's had enough of them!



> _The staff on the unit are absolutely fantastic aren't they!?_

Have you come across Richard yet? He's our favourite! No, as you say, all the staff are wonderful, even the trainees are really friendly and helpful.


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## bumpsmum

glad Andrew is coming on a treat, welcome sherryberry and baby Amelia :hugs: so glad you have found each other, you will be able to support each other so much xx


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## Marleysgirl

Today Andrew is 38 days old, and now weighs 2lb 13.5oz! He's putting on weight like nobody's business, which will hopefully have a good effect on his breathing. He's currently in a regime of 8 hrs on, 4 hrs off, Cpap but is still having a scary number of de-sats. They've changed his milk feeds from hourly to two-hourly, and I'm told when he goes to three-hourly then I can have a try at breast-feeding him!


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## Foogirl

Yay! Well done Andrew!:happydance:


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## Marleysgirl

Photos!!!!!!!!!! Because he was dressed for the first time today!

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/P1020808.jpg

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/P1020814.jpg

His feed is now 22ml every 2 hours, and they're trialling him with 10hrs off Cpap as we speak ... Whilst I was cuddling him today, he was very awake & happy. He kept pulling out his nasal cannula, and his SatO2 rating hardly fluctuated, only as much as it was doing when he was actually receiving oxygen.


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## sherryberry79

Awww what a handsome lil fella all dressed in blue, he is gorgeous! Glad he's thriving, can't wait til we can dress Millie all in pink!


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## Marleysgirl

sherryberry79 said:


> Awww what a handsome lil fella all dressed in blue, he is gorgeous! Glad he's thriving, can't wait til we can dress Millie all in pink!

Can't be far off now ...

So she's in Room 4 - which bed? (right/left, count from door down) - just so I can go and have a nosey!


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## sherryberry79

She is in the second bed on the left as you walk into room four. I have tried to upload some piccies of her onto here but I can't get it to work (I'm a bit of a technophobe)! I think Andrew and Amelia share the same milk fridge too, I saw some bottles labeled up for baby Andrew!


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## bumpsmum

aww look at how big he's getting :happydance: esp with those big boy clothes on! x


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## Foogirl

Awww, baby Andrew in big boy clothes! Yay!

Come on Amelia, you've some catching up to do!! (Can't wait for the pics!!)

:hugs:


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## Marleysgirl

sherryberry79 said:


> She is in the second bed on the left as you walk into room four. I have tried to upload some piccies of her onto here but I can't get it to work (I'm a bit of a technophobe)! I think Andrew and Amelia share the same milk fridge too, I saw some bottles labeled up for baby Andrew!

Some? A whole shelf-full :rofl: Over 5 litres I reckon!


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## sherryberry79

Haha, but it's all good stuff that is making your lil man into such a big strong man! The top drawer of our freezer at home is filled with Millie's EBM, I should take some in to replenish hospital stocks! 

The cardiologist is going to be reviewing Millie's PDA, they have administered courses of meds to close it but no joy, The doctors feel that the PDA is holding her back from gaining weight etc, and if the cardiologist agrees then there is a very strong possibility she will be referred to Alder Hay to have the operation to close it. I am terrified about her going under the knife, she is so tiny and delicate. But I am told it's a relatively straight forward procedure. Has the duct in Andrew's heart closed on its own or with meds?


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## Foogirl

Marleysgirl said:


> sherryberry79 said:
> 
> 
> She is in the second bed on the left as you walk into room four. I have tried to upload some piccies of her onto here but I can't get it to work (I'm a bit of a technophobe)! I think Andrew and Amelia share the same milk fridge too, I saw some bottles labeled up for baby Andrew!
> 
> Some? A whole shelf-full :rofl: Over 5 litres I reckon!Click to expand...

We were the same. My husband reckoned we would have a memorial fridge by the time we left. He kept asking if he should call wiseman dairies to borrow a tanker to deliver it with. I'll tell you though, as they start getting bigger, it is amazing how quickly it gets used up. We took a big cool box with us when we went to get her thinking there was heaps in there but there were only 3 bottles!



sherryberry79 said:


> The cardiologist is going to be reviewing Millie's PDA, they have administered courses of meds to close it but no joy, The doctors feel that the PDA is holding her back from gaining weight etc, and if the cardiologist agrees then there is a very strong possibility she will be referred to Alder Hay to have the operation to close it. I am terrified about her going under the knife, she is so tiny and delicate. But I am told it's a relatively straight forward procedure. Has the duct in Andrew's heart closed on its own or with meds?

Fingers crossed for Millie. At least Alder Hay has a great reputation, is it not one of the best Children's hospitals in the country?


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## Marleysgirl

sherryberry79 said:


> The cardiologist is going to be reviewing Millie's PDA, they have administered courses of meds to close it but no joy, The doctors feel that the PDA is holding her back from gaining weight etc, and if the cardiologist agrees then there is a very strong possibility she will be referred to Alder Hay to have the operation to close it. I am terrified about her going under the knife, she is so tiny and delicate. But I am told it's a relatively straight forward procedure. Has the duct in Andrew's heart closed on its own or with meds?

It's only just been mentioned - literally a couple of days ago, the Doc said that she could occasionally hear a slight murmur which she thinks is the PDA, but she commented that nobody else had heard it (none of the other registrars & nurses) so it was very faint. She therefore thinks it's closing on its own, and isn't going to worry about it until he's old & fit enough to come home.

Alder Hay is meant to be brilliant, which I'm sure you know. 

Non-Prem Story for you all, which shows that even full-term babies can have problems ... Whilst I was on the post-natal ward, I overheard the midwives fretting one night about a baby that appeared to be having breathing problems, and a chest infection was suspected. They transferred the baby early morning to SCBU for oxygen & monitoring. By lunchtime, the baby had been diagnosed with major heart & stomach problems (they'd developed the wrong way around) which was putting pressure on the lungs, and by the evening the baby had been transferred to Alder Hay for a life-saving operation. The Mum was in absolute bits, as she couldn't be taken until the next day, and her OH was stuck at home looking after her other toddlers so couldn't really come with her. :hugs: I've yet to see any of those midwives again to find out how what happened, sorry it's a scary story with an unknown outcome. I just kinda wanted to post it because some people are scared by the results of tests you get in pregnancy; but many problems cannot be diagnosed until after birth.


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## premmiemum123

Hi Marleysgirl, sounds like the PDA is closing if it is faint. My LO had a PDA which started off loud then got quieted as it closed. She still has a heart murmur but it is not a functional problem. I myself have a heart murmur and have lived with it all my life so they can be harmless. Sounds like Andrew will be ok.

You are right about your last comment. I met a woman who gave birth full term and her baby suffered significant brain damage during the birth, he was given a 20% chance of living, doctors prepared her for the worst (switching off the ventilator) but the little fighter pulled through and went home within weeks. It was amazing. The mum was so brave and confident about the future even though her little one was brain damaged, I admired her so much. 

Andrew sounds like a little fighter and he is growing amazingly well. Sounds like you are in an amazing unit. 
These premature babies are amazing. My LO is huge now, she has been through a massive growth spurt, three weeks ago I bought her home at 4lb 10 oz, she is now 8lbs (4 times her birth weight). You watch before you know it, Andrew will be huge and you will wonder where your tiny little tyke went.


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## Marleysgirl

premmiemum123 said:


> Andrew sounds like a little fighter and he is growing amazingly well. Sounds like you are in an amazing unit.
> These premature babies are amazing. My LO is huge now, she has been through a massive growth spurt, three weeks ago I bought her home at 4lb 10 oz, she is now 8lbs (4 times her birth weight). You watch before you know it, Andrew will be huge and you will wonder where your tiny little tyke went.

And no doubt wonder why I bothered buying clothes in such tiny sizes :haha:

Yes, I have to say that St Marys (Manchester) appears to be a fantastic SCBU. Given that my placenta problems may be congenital (is that the word I want?) as opposed to simply coincidence this time, I consider myself lucky to have moved from rural Scotland to a large city. I stuck my nose into Room 4 and (I think) saw Sherry's baby Millie from a distance, but no parents in sight and I didn't want to go noseying without her permission.

Well, I'm in for excitement for the next two days - tomorrow I get to put Andrew to my breast for the first time, see if he roots around for a meal; and the next day I get to give him a bath! (Pew, he must be smelly, six weeks without a bath .....) :haha:


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## sherryberry79

Marleysgirl, I would be happy for you to see Millie whether I'm there or not, it might be tricky getting past the nurses unless I am there though, they are very strict with security, but rightly so I guess. I would love to meet Andrew too, so maybe we can pay them both a visit!

Great news that Andrew's PDA is self correcting. I think they would be happy to leave Millie's for longer to see if it closes naturally if it were not for the fact that she is not gaining very much weight. They feel it's holding her back in terms of growth and breathing, so it looks likely she will have the op. Obviously I would prefer it closed naturally so the op was not needed, but if they are going to do it then the sooner the better as far as I am concerned, I just want to see her thrive, and it doesn't look like she will until the heart duct is closed.

Sorry for Hi-jacking your thread, I have just posted a pic of Millie in her own thread so Andrew can have his back!!


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## Marleysgirl

Well, today Andrew stared at my boob ("What do you expect me to do with that? :rofl:) and kissed it a couple of times, but didn't associate it with food. Try again tomorrow, if we manage to get there when he's off Cpap - they're changing him to 12hrs off & 4hrs on.

He's going to have an MR scan next week to get a better look at the site of his cranial (extra-dural) bleed. Hopefully we'll get a better idea from those results as to whether there's any damage.

Sorry, not writing much as not in a chirpy mood today.


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## Foogirl

Marleysgirl said:


> Well, today Andrew stared at my boob ("What do you expect me to do with that? :rofl:) and kissed it a couple of times, but didn't associate it with food. Try again tomorrow, if we manage to get there when he's off Cpap - they're changing him to 12hrs off & 4hrs on.
> 
> He's going to have an MR scan next week to get a better look at the site of his cranial (extra-dural) bleed. Hopefully we'll get a better idea from those results as to whether there's any damage.
> 
> Sorry, not writing much as not in a chirpy mood today.

Another great first. I remember Abby lying licking it all kitten like. We had her fed through her tube at the same time so she got used to getting a full tummy at the breast. I do remember looking down at her tiny head agains my massive boob and thinking "That must scare the beejeezers out of her!"

Hope the scan goes well and that tomorrow is a better day for you. :hugs:


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## Marleysgirl

Meant to say, I also had my 6wk post-natal appointment and discussion with the consultant who runs the Placenta Clinic here ...

The problems I had with my abnormal bloodflow into the placenta, resulting in Andrew's IUGR and premature delivery, *are* likely to recur. He doesn't think they'd be as bad a second time, plus they would go for a high level of monitoring (doppler scan @ 11 weeks and take it from there), and insist on screening if appropriate. 

He recommends we wait at least a year before trying to give the c/section time to recover, and also to see whether Andrew has any difficulties resulting from his premie birth and cranial bleed. He reckons there would be no problem fertility-wise with waiting, as I fell pregnant so soon this time round.

My OH was there when we were told this, he's keen on a second child, but we haven't actually discussed the consultant's advice yet. My worries would be around needing the higher level of care, having a premie and then baby having a protracted SCBU stay, all whilst having a toddler (Andrew) to take care of.


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## Foogirl

Marleysgirl said:


> Meant to say, I also had my 6wk post-natal appointment and discussion with the consultant who runs the Placenta Clinic here ...
> 
> The problems I had with my abnormal bloodflow into the placenta, resulting in Andrew's IUGR and premature delivery, *are* likely to recur. He doesn't think they'd be as bad a second time, plus they would go for a high level of monitoring (doppler scan @ 11 weeks and take it from there), and insist on screening if appropriate.
> 
> He recommends we wait at least a year before trying to give the c/section time to recover, and also to see whether Andrew has any difficulties resulting from his premie birth and cranial bleed. He reckons there would be no problem fertility-wise with waiting, as I fell pregnant so soon this time round.
> 
> My OH was there when we were told this, he's keen on a second child, but we haven't actually discussed the consultant's advice yet. My worries would be around needing the higher level of care, having a premie and then baby having a protracted SCBU stay, all whilst having a toddler (Andrew) to take care of.

It can be worrying. We were told there was no reason it would happen again to us. But of course, there was no reason for it to happen this time.

Our consultant reckoned there was no need to wait a year after a section. As she said when we met her 6 weeks after - I was already healed, and pregnancy takes 9 months! But we've no plans to go for it just yet. As you say, if it happens again, going through all that and looking after a toddler would be really difficult!


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## chrissie33

How are you both doing now hun?


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## Marleysgirl

Got a surprise when I phoned (after a long lie-in) this morning to check on Andrew's progress - he'd still not been put back on Cpap since 6am yesterday morning! That was 28 hours at that point ... 33 hours by the time we left him this afternoon, and still going strong just on his nasal cannula! :happydance: :happydance: :happydance:

And he'd been dressed in a cute babygro with "I love Daddy" all over it.

And they've switched him to a nasal gastric tube - nobody really said why, but I'm hoping it's so that they can start cup-feeding him, and to give him more of a chance to breast-feed! Which I didn't try today, I didn't want to disturb him when he was so many hours off Cpap, I didn't want to stress him out more! Save it for tomorrow.

Oh, and he weighs 1.404kg (3lb 1.5oz) now! :D


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## Dona

Great news! Hopefully that's Andrew off CPAP altogether - I will keep everything crossed! 

I bet it was emotional seeing Andrew his Daddy babygrow with only his nasal cannular on his face. Re his feeding tube, they move it to up the nose when his gag reflux has matured, normally around 32 weeks. Its also when they will start to try and intro feeding. 

A wee tip for you. As Andrew has a nasal cannular tube and now a feeding tube up his nose at the same time, I would ask them to make sure the feeding tube is the smallest one. I think its a 6 from memory. We found that when they moved Archie's feeding tube to an 8 his o2 requirement increased but reduced again when we asked for a 6. 

It's great to hear that Andrew's gaining lots of weight. I remember a nurse saying to us at the start of Archie's journey that all you hope for is a baby that is a feeder and a grower and your out of there! Archie was that baby! 

More pictures of Andrew please!

Dona and Archie xxx


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## chrissie33

Fab news hun, Andrew is doing so well!


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## premmiemum123

Marleysgirl said:


> Got a surprise when I phoned (after a long lie-in) this morning to check on Andrew's progress - he'd still not been put back on Cpap since 6am yesterday morning! That was 28 hours at that point ... 33 hours by the time we left him this afternoon, and still going strong just on his nasal cannula! :happydance: :happydance: :happydance:
> 
> And he'd been dressed in a cute babygro with "I love Daddy" all over it.
> 
> And they've switched him to a nasal gastric tube - nobody really said why, but I'm hoping it's so that they can start cup-feeding him, and to give him more of a chance to breast-feed! Which I didn't try today, I didn't want to disturb him when he was so many hours off Cpap, I didn't want to stress him out more! Save it for tomorrow.
> 
> Oh, and he weighs 1.404kg (3lb 1.5oz) now! :D

Andrew is doing so well in a short space of time, am so jealous! Considering his weight he is doing better than Emily did, she took ages to come off CPAP.
His weight is really good too, obviously he loves his milk...

Seeing them in a babygro for the first time is amazing and you begin to see your baby as what I call 'a real baby'. It won't be long before he is in a cot if not already, then you can stare down at him all day...it amazing how the hours pass just staring at your LO. 

Good luck with the breastfeeding.


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## Marleysgirl

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/DSC01589.jpg

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/DSC01591.jpg


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## sherryberry79

Such a handsome little fella, just gorgeous!


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## Marleysgirl

Thank you! How's Millie? (Does anyone else see a playdate on the horizon?)


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## Bec L

Great news. He is such a cutie :)


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## sherryberry79

Playdates sound like fun!
Not too much change with Millie at the moment. She has been pencilled in to have the PDA ligation on Thursday at Alderhey Hospital. Nurses keep stressing that it may get cancelled as it is subject to there being a bed/transport/no emergency surgery cases, we just have to keep our fingers crossed it will go ahead as planned I guess!


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## avabear73

Love the photos, he really is a sweetheart :)


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## Jemma_x

He's gorgeous x


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## polaris

Just popping in to check on Andrew's progress. I love the photos of him in his babygro, he is such a cutie!!


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## Marleysgirl

Guess who got promoted from his incubator into a cot?

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/DSC00412.jpg

Andrew now weighs 1.5kg (3lb 4oz), and is maintaining his temperature - well, wouldn't you when wearing a vest, a babygro, a cardigan, a hat, and then being swaddled? 

He had another ROP check this morning, still showing slight Stage 1 damage.

And I finally got a hospital-grade double breast pump, so hopefully my output will start increasing now!


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## Dona

Aww Hun he is a wee cutie. I am so happy for you...and your pump LOL!


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## premmiemum123

I am so pleased to read the latest update...what amazing progress, he is adorable. 
They do smother them in loads of clothes and then when you get them home the laters start reducing, these babies are amazing at learning to control their temperatures.
1.5kg is great, nearly at the 1.8 kg stage when they start assessing and working towards discharging him...can't believe you are at this point already, to go from a mere 685grams to a whopping 1.5kg is amazing, what a little fighter...

Fingers crossed the ROP damage repairs itself, it amazing how these things change...

Good luck with the pump and milk production...


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## Marleysgirl

Oooh, is 1.8kg the threshold? (does quick calculation) Ah, 4lb! Handy to know what target we're aiming for, though I know it'll depend on whether he's weaned from the oxygen by then too.

Funny but when I arrived yesterday, I was asking the trainee nurse (mine was on break) if she knew the threshold for Andrew moving into a cot, which she didn't. Then my nurse returned and said "Would you like to cuddle him while we remove his incubator?" I was so happy :happydance: :happydance:


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## grumpymoo

i am so happy for you, he is fab!:happydance:


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## premmiemum123

Marleysgirl said:


> Oooh, is 1.8kg the threshold? (does quick calculation) Ah, 4lb! Handy to know what target we're aiming for, though I know it'll depend on whether he's weaned from the oxygen by then too.
> 
> Funny but when I arrived yesterday, I was asking the trainee nurse (mine was on break) if she knew the threshold for Andrew moving into a cot, which she didn't. Then my nurse returned and said "Would you like to cuddle him while we remove his incubator?" I was so happy :happydance: :happydance:

I was told the following criteria would determine discharge:

Being over or 1.8 kg
Breathing unassisted or stable assisted breathing if on oxygen
Able to control body temperature
Feeding well and gaining weight

Every hospital is different so it worth checking out the critieria, it gives you hope everytime you pass a milestone.


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## Jemma_x

He's doing so well x


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## Marleysgirl

premmiemum123 said:


> I was told the following criteria would determine discharge:
> 
> Being over or 1.8 kg
> Breathing unassisted or stable assisted breathing if on oxygen
> Able to control body temperature - *CHECK*
> Feeding well and gaining weight - *KINDA CHECK*

Almost halfway there - definitely maintaining body temperature, and he's feeding well, albeit from a cup right now but I'm optimistic for getting BF nailed in the next few weeks. 

I'm going to be watching his weight like mad from now on!


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## dannigizmo

Getting there, he be home in no time hun!! What an amazing wee man!! xxx


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## bumpsmum

he's coming on a treat hun, will be home in no time :hugs: x


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## Marleysgirl

Well, he's getting closer to that weight target - 1.657kg (3lb 10oz) last night!

He's taken a tumble on the oxygen though, they've had to increase him right up to 0.4l (from 0.05ish). It followed a cup-feeding session where they think some milk "went down the wrong way" (in adult speak), i.e. a bit got into his lungs. The nurse was going to ask the docs this morning about resuming cup-feeding, I shall find out this afternoon how that went. 

He's also been moved onto 4-hourly feeds now. We were there yesterday for his 3pm feed but he didn't wake or show any signs of hunger, so again no interest in latching on.


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## sherryberry79

Hi Marleysgirl,

Thanks for your reply on Millie's thread, thought I would reply on Andrews!
I think it's quite common for preemeis to have swollen tummies, so if Andrews is not too bad then I am sure it's nothing to worry about. Not sure about the swollen scrotum, but I wish I had not let Millie's swollen tummy go un-investigated for so long. It may come to nothing, and could indeed turn out to be trapped wind, but now they admit maybe it's something different I have to say I am very concerned. Something just didn't seem right about the trapped wind theory and I wish I had been more of a pushy parent. Maybe you could make an appointment to see Dr Gottenstein to discuss the swelling on his scrotum? 

How did today go? Was he able to continue with his cup feeding? He is doing so well, and he is getting to be such a big strapping boy, Millie sends him a big hug x


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## Marleysgirl

We asked again about the swelling and it's been confirmed that it's not a hernia, just simply swelling of the genitals - and apparently premie boys sometimes get this. The Doc said that they won't worry until he gets to a year old, see if it's still swollen then.

They tried Andrew with cup-feeding at 11, but he wasn't very interested and too dozey so they tube-fed. I was going to cupfeed at 3, but again he was too sleepy - well, he had just been awake for 30 minutes while we tried to BF! He's very into kissy and lying there with my nipple lightly in his mouth, but no sucking yet.

They're feeding him 58ml every 4 hours now, it looks like loads and I wonder whether he's got hollow legs, as his tummy can't be that big! I'm only expressing between 50 & 60ml every 4 hours, so he's caught me up, he'll be overtaking me soon and I'll have to start ramping up production!


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## ktsl123

very happy he is doing well, congratulations.


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## Marleysgirl

Well, Andrew's consumption will officially have exceeded my EBM production today!

He's put on another 112g in 3 days - so now he's 1.769 kg, or 3lb 14oz. Only two ounces off that magical 4lb figure!

He's still spending 90% of his time asleep, putting all his calories into growing. As a result, he's hardly awake for cupfeeding (they manage about 5-10ml a time before he snoozes) or for attempting breastfeeding. But never mind, he's doing something useful (growing) during his sleep, so I will continue not to fret until he reaches term in another three weeks.

My EBM appears to be decreasing though, now down to 45-50ml a session, not sure what's causing that. I'm reluctant to go to the docs to get medication, so will be hunting fenugreek tablets on the net, plus I've started on the oats (porridge & hobnobs) this morning.

Andrew is having an MRI scan this evening to assess the damage caused by the prenatal cranial bleed, not a pleasant process for either him or us.


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## grumpymoo

isn't he doing well! and you:)

Are you really tired, you are on a bit of a stressful journey after all? Perhaps this is effecting your milk?
I was useless at expressing while Rose was in hospital, was lucky to get 10ml:blush:and i was on domperidone! My milk only really took off once she was able to bf and then there was no stopping her.

Good luck, hope you get it sorted x


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## tillymum

Gosh Andrew is doing so well he's growing at a great rate and 8 weeks old already!
Good luck with the MRI scan xxx


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## Foogirl

Yay! Well done Andrew :happydance:

You eating and drinking enough? I found the most difficult thing whilst too-ing and fro-ing to the hospital was eating regular, proper meals. My supply definitely increased when I got back to eating properly.


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## Marleysgirl

Not sure if it's the porridge, but my EBM has been back up at 60ml the last couple of times :happydance: Andrew's now on 62ml per session, but still only taking 5-10ml by cup.

And he's been promoted - out of High Dep, and into the Nursery :happydance: :happydance:

The MRI scan was a bit of a palaver. His last feed was at 1pm, oral sedation given at 5pm then went down to the dept to find the radiographer leaving to do an urgent neonatal xray! When she returned 30 mins later, Andrew was waking - his hunger fighting against the sedation. She faffed for 15mins trying to put a SaO2 monitor on his foot/hand, and he was wide awake and moving, so she declared she couldn't scan him till he was settled. I cuddled him while the nurse tubefed him a small amount of EBM and luckily he went to sleep. Another 5mins faff with the monitor before giving up (the nurse would watch his pinkness!) and into the MRI scanner. Then the radiographer had problems with the scanner, so he was in there 30 mins instead of 15mins. Aaaaaaargh. A simple scan turned into a 2 hour session. Luckily he stayed settled despite the noise (they didn't give him ear protectors, only me!) and they got a good image.

Back up to the ward for cares and the rest of his now-late feed, and a Sister starts talking about his move to a different hospital to free a bed. You what???????????? First we've heard, and he's where he should be given where we live; moving him to the next hospital would cause us transport problems and - more importantly - makes no sense for continuity of his care, especially following an MRI scan for his cranial bleed. Seriously not happy, stressed, worrying - I wasn't even taken aside to be told this, it was bandied across the open ward. I told her to go and check again with his consultant, and hopefully we'll find out more today.


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## premmiemum123

I don't understand why they would move you, are you currently in a level 3 unit, are they sending you to a level 2 unit? I thought they always try to locate you closer to home. Emily was born in a hospital an hours drive from home and then was transferred nearer home which was a 10 minute journey. I don't understand why they would move your further out...I would definitely fight it, moving babies is never good and is unsettling.

I hope the scans turn out to be positive, fingers crossed...

Glad your EBM has improved, drinking lots and eating regularly is key...


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## Marleysgirl

Well, they're not moving him :happydance: :happydance: :happydance:

It would make no sense in our eyes to move him further away (okay, so it's only a few miles but it's the wrong way for transport!), and would be bad for assessing his progress. But I'm not sure these were convincing arguments, I think it was our refusal to give our consent that probably made them think again. Not to mention how it would look on the documentary that Andrew's participating in .........


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## sherryberry79

Millie won't have to say bye to her litle friend so soon then. Glad you were able to get their decision changed, it'd be more stressful if you were unable to get to and fro easily....as if life isn't stressful enough with a baby in SCBU!

It sounds like the brain scan was a bit of a farce, but I am glad they got there in the end and I hope everything is okay.


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## dannigizmo

Well done Andrew!! Glad they not moving yous, though am sure you would be putting your foot down if they were anyway!!

Hope scan all ok hun and get home soon Andrew!! xxx


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## Dona

Aww well done Andrew for moving to the last nursery....next step HOME! Great news on your EBM too. Glad you put your foot down re the move, such a silly decision anyway. 

More pictures please! 

Dona and Archie xxx


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## Marleysgirl

Okay, I'll try and get more photos uploaded for you!

Andrew had his first bath today :happydance: which means I bathed a baby for the first time :happydance: And he was really good, didn't pee or poop in his towel nor in the bath. Splashed quite happily. Then had his feed (tube) and went to sleep.


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## Marleysgirl

Woohooooooooooooooooooo .... he's over the 4lb limit! Weighed in last night at 1840g, which is 4lb 1oz in old money. 

There was a vague muttering of him perhaps coming home on oxygen if we can get the BF sorted, but I asked about that and they said they'd let me know if/when they want me to visit for longer or "room in" so that we get BF established.


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## Jemma_x

Congrats hun, thats brilliant x


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## grumpymoo

How fantastic!!!!!!!!!O:) you must be so pleased. not long now then x


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## Dona

Great news! xxx


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## bumpsmum

thats fantastic news, he will be home in no time xx


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## embojet

FAB news :hugs:


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## dannigizmo

Fab news hun, and he liked the bath!! better than my first experience, Emma cried her head off!!! xxx


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## BabyHaines

have just been reading through and had to say what a beautiful little boy you have. You must be sooooooo proud, and for him to be so strong xxxx


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## Marleysgirl

Woohoo ............. Andrew took a short breast-feed today! :D Only for a few minutes but he definitely got milk this time, not just mouthing.


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## Jemma_x

well done andrew


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## premmiemum123

Wow it sounds like he is progressing so well and so quickly! What a brave strong little man! So gorgeous too!
I hope you feel a bit more relaxed now and this is helping your BF...bring on the impatience to get him home. Not long now!


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## Marleysgirl

First movement today towards Andrew coming home!

The NICU Matron had a chat to us about Andrew coming home on oxygen (if he doesn't wean before then), as it takes a couple of weeks to organise the meetings, training, home visit & installation etc. We are to let them know in a couple of days if we want them to start this process.

In the meantime, Andrew and I have to get BF sussed. I'm going to be spending all day in the unit, so that I can be there for his feed times but effectively try to feed on demand - so that he learns to feel hunger, rather than simply being content with a regular tube feed. 

Then I'll be expected to "room in", so that I can also do night feeds, and learn how to manage his oxygen equipment and monitors.

And then he'll come home :happydance: :happydance: :happydance:

I don't think we'll manage it by his original due date (3 November), but it should be only a few days after that, I reckon.

So excuse me if I'm not around much for the next few weeks!


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## bumpsmum

FANTASTIC NEWS :happydance: :happydance: he's a real fighter I think you'll start plannig for to come home on oxygen then he'll pleasantly surprise you and wean off it before hometime! :happydance: home and settled in nicely before santa comes x x


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## Foogirl

:happydance::happydance::happydance:

Yay, Go Andrew!!!

:hugs:


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## Marleysgirl

Latest photo:-

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/DSC01600.jpg


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## angelstardust

*stalks* 

He is looking so well! Well done on 4lb, your milkies must be super stuff, fingers crossed for him getting to escpae soon.


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## polaris

So lovely to read about how well Andrew is doing. That's brilliant news about getting started properly on the breast feeding. His weight gain is fantastic too. How exciting that he will be home with you soon!!!!


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## Foogirl

Absolutely gorgeous.


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## Dona

Brill news Hun - well done Andrew. Enjoy the next part of your journey which is the best part, preparing for your baby to come home xxx


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## embojet

Well done Andrew and Mummy! He is doing so well, you must be really excited! :hugs:


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## tillymum

Fantastic news both on Andrew BF'ing and possibly coming home :happydance::happydance:
He is such a little trouper, he seems so strong in his new photo, what a little cutie!!
You must be so excited and proud of your little man!


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## grumpymoo

awwwww he is so cute! nearly there now, good luck:hugs:


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## avabear73

Can't believe how much he's grown .... wow!! Fantastic news about him starting to move towards going home :hugs:


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## lou1979

super news huni!!

hes gorgeous xx


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## sherryberry79

What fabulous news.....well done Andrew! You must be over the moon at just the thought of having Andrew home with you where he belongs! Great news that he is showing interest in breast feeding too, he is a little star x


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## Marleysgirl

Latest weight is 4 lb 4 oz, but I suspect the weight gain to lessen slightly while we get BF established.

Oxygen requirements went down to 0.1 last night for three hours - either boobie juice is really good for him, or he was sooooooooo relieved to be back on cup & tube-feeds for a few hours :rofl:


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## ellie

just sneaking in to see how he's getting on ... brilliantly it seems, well done Andrew and Mum :happydance: hope he comes home really soon!


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## premmiemum123

Wow he is doing so well. Won't be long before the room in....x


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## Marleysgirl

Mr Grumpy tonight - my first multi-hour session of trying to quieten a crying baby :happydance:


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## Foogirl

Marleysgirl said:


> Mr Grumpy tonight - my first multi-hour session of trying to quieten a crying baby :happydance:

Well done you! Makes you feel like a real mum doesn't it!


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## Marleysgirl

Andrew's oxygen requirements have been coming down steadily since yesterday, and today he was tried completely off oxygen for a while - and was coping fine when I left at 9pm!

Fingers crossed that he continues to cope overnight, but not counting chickens yet ...


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## premmiemum123

Marleysgirl said:


> Andrew's oxygen requirements have been coming down steadily since yesterday, and today he was tried completely off oxygen for a while - and was coping fine when I left at 9pm!
> 
> Fingers crossed that he continues to cope overnight, but not counting chickens yet ...

That is great news, he is doing so well. It is wonderful when they get to the stage where they are starting to breathe on their own. It makes you so proud. Slowly but surely he will get there, in his own time...


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## Marleysgirl

I'm a bit down today, as there seems to be little progress or news.

Andrew is still on oxygen, he came off it on Sunday but Monday's nurse decided that she didn't like his sats dropping and put him back on. He's cycling between 0.02l (98% ave) and 0.01l (88% ave), it's a shame the low-flow doesn't have a midway setting of 0.015. I am hoping to speak to the Matron tomorrow, as I'm not sure they'll continue with the plan to let him home on oxygen now it's this low, but it could take a while still to wean him completely. 

BF also is not going well. It seems he's latching briefly, but not really sucking, certainly not long enough to get more than a few drops. Most of the time he's either too sleepy or too grumpy to open his mouth wide enough for a proper latch. Last week he didn't gain weight at all, as they weren't supplementing him after BF session; this week, he's being supplemented with tube-feeds to ensure he gets some nutrition. I'm finding it really hard going, as I'm making the effort to be there for three feeds (10 hrs on the ward) but without successfully feeding him :( I've had chats to the BF advisor, who says that Andrew is both premature & immature for his age, and that it could take weeks - but they won't let him come home until feeding is established, either breast or bottle (which she thinks would take just as long). 

So I'm not doing so well, Andrew's got two final hurdles to jump and both of them could take weeks. I'd be more understanding if he had something medically wrong that was keeping him in hospital, it's hard for me that it's basic things like breathing and feeding, both of which cannot be corrected or taught, I feel like there's nothing we or anyone can do to progress the situation.

No results from the MRI scan yet.

I'm tired. Can you tell? My life consists of pump, breakfast, go to hospital ... come home, have tea, pump, go to bed - and then get up to pump halfway through the night. I know it's all necessary, but it's hard keeping this going.


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## Jemma_x

Oh hun, im sure andrew will get there eventually. He's done so well so far and im sure it wont take him to long to get the hang of BF. :hugs:


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## sherryberry79

:hugs: Andrew and you are doing so well, it's only natural to feel a little low sometimes. This is such a tough time, but it won't last forever, I have been told so many times by so many nurses that these babies often "turn a corner" really suddenly, and those things things that seemed insurmountable suddenly click into place. I'm sure they have told you the same, but I think it's worth believing them on this one! 

Millie and I are a long way behind Andrew and yourself, and I know that I will have all this frustration to come, I will have to re-read this reply when that time comes as I know it's really easy to write these words of wisdom but less easy to be patient and wait to "turn that corner" when you feel so frustrated that things can't move more quickly. 

Keep your chin up, he will get there hun x


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## Foogirl

Marleysgirl said:


> I'm a bit down today, as there seems to be little progress or news.
> 
> Andrew is still on oxygen, he came off it on Sunday but Monday's nurse decided that she didn't like his sats dropping and put him back on. He's cycling between 0.02l (98% ave) and 0.01l (88% ave), it's a shame the low-flow doesn't have a midway setting of 0.015. I am hoping to speak to the Matron tomorrow, as I'm not sure they'll continue with the plan to let him home on oxygen now it's this low, but it could take a while still to wean him completely.
> 
> BF also is not going well. It seems he's latching briefly, but not really sucking, certainly not long enough to get more than a few drops. Most of the time he's either too sleepy or too grumpy to open his mouth wide enough for a proper latch. Last week he didn't gain weight at all, as they weren't supplementing him after BF session; this week, he's being supplemented with tube-feeds to ensure he gets some nutrition. I'm finding it really hard going, as I'm making the effort to be there for three feeds (10 hrs on the ward) but without successfully feeding him :( I've had chats to the BF advisor, who says that Andrew is both premature & immature for his age, and that it could take weeks - but they won't let him come home until feeding is established, either breast or bottle (which she thinks would take just as long).
> 
> ...
> 
> I'm tired. Can you tell? My life consists of pump, breakfast, go to hospital ... come home, have tea, pump, go to bed - and then get up to pump halfway through the night. I know it's all necessary, but it's hard keeping this going.

I absolutely hated this part. It seemed like forever and there was no light at the end of the tunnel. And just when you thought you were making progress, there is another bump in the road. You are so close to the final sprint and just can't wait for it to start. But it will happen - when you least expect it.

Abby took forever to get on properly with the breastfeeding. In fact, even the day before we took her home, she seemed not to be that interested. Many a time I was in tears thinking she'd never do it properly and I'd have to exclusively pump. At the hospital they supplemented ALL her feeds with the tube to ensure she was putting on weight. Maybe you can insist on this when you are there, if you feel he hasn't taken enough. Also ask them to always try him with a bottle when you aren't there and top up if necessary. Relax with it and treat it less as "he must take a good feed" and more as "whether he is eating or not, this is such a great thing, bonding and providing comfort with my wee boy" Once I did that, it became so much easier to take.

But I will echo what Sherry said. Once he gets it, it should be full steam ahead. From them telling us that Abby had taken a whole feed through the bottle, to us having her home there was about 2 weeks. She progressively took more and more from the bottle and after a week they took out her tube and within a couple of days of that they were talking about her coming home. 

If the merry go round is getting too much, take a day off. Seriously. You need to keep in a good frame of mind (as far as is possible) and to be ready for him coming home. You are doing way more than many mums do (way more than I did too!), and certainly being at the hospital all day every day is helping him come on as well as he has. But 1 day away, bearing in mind they can use bottle feeds, will not undo all your good work and he'll still be practicing. Book yourself a massage/hairdo/go swimming or just have a duvet day. If you feel you can't miss it completely, go in later in the evening to do his last feed of the day.

You deserve a break and if you return to it more refreshed and with a positive mental attitude, more relaxed, you will be able to deal with any frustrations a whole lot better.

:hugs:


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## premmiemum123

I echo what Foogirl has said, you will make yourself ill if you spend too much time at the hospital. I know you want to crack the breast feeding and be there for every feed but you need time to recharge. Believe me the real hard work comes when you get them home. I spent hours at the hospital towards the end as I too was frustrated with Emily's lack of feeding and oxygen levels dipping down the 30s, even when she was near term. I was at the hospital all day trying to crack her feeding and she too lost weight. I know you just want to scream! Eventually I gave up breastfeeding for a multitude of reasons, one being I injured my back and had to take strong pain killers and also because Emily just did not want the breast. I figured as I had given her 2.5 months of breast milk it would be safe to give her formula, I did and it was a huge relief. Then boy did she put on weight, half a pound a week and still is. 

The last part is the hardest and the most frustrating, all the mums on here will tell you that, trying to crack the feeding, weaning them off oxygen, it is no longer about their fight for survival it is all about preparing them to go home (quote Dona). You will get there. 
I remember booking to room in and was all excited and started making plan, but then Emily decided to de-saturate down to the 30s again whilst bottle feeding, I cried and was inconsolable by the nurses, I felt I would never get her home (that is when I joined BnB as I was at the end of my tether). However, it didn't last long the next week she turned a corner and they let me room in. Towards the end it is 2 steps forward and 3 steps back...they like to keep us on our toes...

You will get there...in the meantime as Foogirl says take a break and recharge, it will give you a new perspective on things...

Big hugs xxx


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## Marleysgirl

*Foogirl*, did you find that Abby took to the bottle more easily than the breast? 

My hospital's BF Advisor thought that it would take Andrew just as long to learn how to bottle-feed (EBM), so there would be no time gained by switching him off the breast at this point, and advised to continue cup-feeding as a 2nd method. She was most definitely against mixing breast and bottle.

He is now always topped-up with a tube feed, so at least he's getting the correct nutrition.

This morning's phone call advises that his O2 is back up to 0.03, aaaargh. I swear it's different nurses with different ideas, yesterday's daytime nurse was all for removing his oxygen cannula completely and just accepting a few dips to 85%, whereas others seem to want to see him at 99% all the time.


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## bumpsmum

Matthew started out bottle fed EBM then buit up to BF, they only let him try cup feeding once to see what he would do. Is cup feeding not more tiring for him? To be honest I think these tiny babies learn to be flexible with feeds Matthew would take milk any way its offered and didnt cause any confusion going from tube/bottle/breast etc maybe worth asking about this again. 
Sorry your having a rough couple of days, I hope you get some rest some time out will help you recharge xx


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## Foogirl

Marleysgirl said:


> *Foogirl*, did you find that Abby took to the bottle more easily than the breast?
> 
> My hospital's BF Advisor thought that it would take Andrew just as long to learn how to bottle-feed (EBM), so there would be no time gained by switching him off the breast at this point, and advised to continue cup-feeding as a 2nd method. She was most definitely against mixing breast and bottle.

There is the myth that they will get nipple confusion. Abby managed fine switching between the two, it is only now she has started to refuse the bottle. The majority of the babies in the unit when she was in were bottle and breast fed and there didn't seem to be any issue with it.

It wasn't so much that she took the bottle more easily, she was able to take a better feed from the bottle because it was less tiring for her. We also switched to using a nipple shield as she kept falling off. I wasn't keen, but it really made a big difference to her being able to take a better feed. After she was home for about two weeks, I started trying her without the sheild and within the month she was able to do with or without it.

They need practice sucking, breathing and swallowing. Does the cup feed give them that? If not they are as well carrying on with the tube when you aren't there!!



Marleysgirl said:


> This morning's phone call advises that his O2 is back up to 0.03, aaaargh. I swear it's different nurses with different ideas, yesterday's daytime nurse was all for removing his oxygen cannula completely and just accepting a few dips to 85%, whereas others seem to want to see him at 99% all the time.

This is the most frustrating thing. Everyone does things differently. I would say get the doctor / consultant to tell you what is the best thing, and get it written in his notes.


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## Marleysgirl

When we left tonight, Andrew was back down to 0.01 oxygen, and doing just fine. His nasal cannula actually fell out for 30 minutes at lunchtime and the nurses didn't notice (and I didn't tell them) as he didn't de-sat. I still think he breathes better without them, he's so small that they almost fill his nostrils (one size fits all!)

Am contemplating the bottle / breast thing. Andrew squawks when laid down at the boob, and calms down when sat up again, as if intimidated by the position - we have to remember, for 7wks all he's known is "hands off" nursing with extremely short bursts of skin2skin with me, he's not used to being so close to another human body. He takes a cupfeed fine, other than getting tired after a while - but the point is, he doesn't cry during it. He also gets snuffly when laid down, as if the milk isn't being swallowed down but is instead going back up into his nose. 

The more I think about it, the more I reckon I'm going to try him with a bottle. In fact, 2 bottles - the standard teat that they use on the unit, and also the breastflow bottle that I have for home use. The way I see it, he'll either (1) not take the bottle, in which case we haven't lost anything and can carry on trying on the breast, or (2) take the bottle, in which case we've found a way of successfully feeding.

Happy to hear others' opinions!

Might look into nipple shields too, as he does keep falling off!


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## Foogirl

Marleysgirl said:


> The more I think about it, the more I reckon I'm going to try him with a bottle. In fact, 2 bottles - the standard teat that they use on the unit, and also the breastflow bottle that I have for home use. The way I see it, he'll either (1) not take the bottle, in which case we haven't lost anything and can carry on trying on the breast, or (2) take the bottle, in which case we've found a way of successfully feeding.
> 
> Happy to hear others' opinions!
> 
> Might look into nipple shields too, as he does keep falling off!

They should have the premature teats on the ward, if not, we use the closer to nature ones. But to be honest, most teats will probably be fine.

I would say your plan is a good one. Nothing to lose as you say. It also means if it takes him a wee while longer to establish the breastfeeding, at least he is taking bottles and that is all he needs to do to get home.
For the nipple shields, absolutely do NOT use the mothercare ones. They are flimsy and useless. The Avent ones are the ones I used and they are great.


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## Marleysgirl

:happydance: :happydance: :happydance: :happydance: :happydance: :happydance:

Today Andrew was cycling off 0.01 oxygen into air, removed his nasal cannula, and threw them out of the cot!

Also - I think as a result of this! - he BF better, still not opening his mouth very wide but definitely latching and feeding. He knew what to do, but would only do it when happily hungry, at one feed he was too sleepy but at the others he did well.

His Discharge Meeting (health visitor et al) is organised for next Tuesday - which was his original due date!!! Hopefully home a few days after that, presuming that he stays off oxygen and continues his sterling progress.


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## sherryberry79

:happydance: Way to go Andrew! I can't believe they are talking about discharge, that is really fabulous news.....Im crossing all my fingers and toes that he gets the green light, I know he will! Have you got any recent pics of your gorgeous lil guy?


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## Marleysgirl

One of Nanna's cardigans .... in his Strictly pose ...

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/DSC00428.jpg


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## sherryberry79

OMG he is adorable, he looks sooooo cute in his nanna's cardie too! I have a lil dance partner for him!!


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## Jemma_x

Hes gorgeous c


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## Marleysgirl

*Rooming-In*

:happydance: :happydance: :happydance: :happydance: :happydance: :happydance: :happydance:​


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## Foogirl

Marleysgirl said:


> *Rooming-In*
> 
> :happydance: :happydance: :happydance: :happydance: :happydance: :happydance: :happydance:​

Yay!!!!!!!!!!!!!!

I go offline for a couple of days and all this happens!

I'm so pleased.:thumbup::thumbup::hugs:


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## avabear73

Wonderful news!!!!!! Enjoy :happydance:

Oh and he has grown so much! What a difference in him!


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## Jemma_x

Thats great news x


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## lou1979

SUPER NEWS!!!!!

He is adorable xx


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## embojet

I'm so happy for you! Hope to hear he is home soon, he is doing so well :happydance:


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## tillymum

Wow so happy for you :happydance:
What a little trouper and I'm loving him in his yellow cardie and hat!
Hope this week goes well and you have him home very soon


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## premmiemum123

Hope the rooming in was successful incase I missed it. Wow soon he will be home. Rooming is so strange at first, sleeping next to your baby you have been visiting for the last couple of months. You can't stop checking they are ok in their cot and you don't sleep at all...it is lovely though as they are totally in your care...at last! Good luck and keep us updated if you can once you get home...x


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## Marleysgirl

Well, that didn't go as planned ...

Firstly when I got there, the docs on the ward round had decided that Andrew couldn't leave the ward as they weren't happy about him being off the SaO2 monitor. Cue me getting upset (I'd got myself psyched up for this), and I even offered to have the monitor in the room. Thank goodness the afternoon docs reconsidered and said that he'd be fine so long as the nurses checked him regularly (which they did).

I started to try to BF on demand from 2pm, but he thrashed around and only latched intermittently; after 45 minutes, he'd be so tired that he'd fall asleep from exhaustion rather than fullness, I reckon. I found it totally tiring and demoralising that he'd be upset for an hour, unable to feed properly - the purpose of staying in was to see if he was any better when feeding on demand, but the answer came back as "no", just that he was more desperate and more frantic.

He ended up back on the ward from midnight, having a tube top-up then and again following a BF attempt at 4am. :(

At 8am, I decided not to put him through the misery again, and offered him EBM by bottle. Considering it was his first time, he did brilliantly - duck to water. The big thing is that he settled back to sleep afterwards, rather than lying griping, pouting and wailing.

At lunchtime, I tried him on the breast for 15 mins until he became seriously upset, and then topped him up by bottle (rather than tube). I'll try this again at 4ish.


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## embojet

Sorry its not going to plan hun. :hugs:


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## CazH

Hoping tomorrow goes better for you hun the little monkey!! :hugs:


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## premmiemum123

Sorry to hear it did not go to plan...fingers crossed tomorrow is a better day...he will get there in his own time...my LO was the same...she took ages. I swear they just want to stay in NICU/SCBU so they can get all that lovely attention from the nurses. x


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## Marleysgirl

The NICU nurses say that Andrew is taking EBM from a bottle just fine - when he's tired, they switch from the Breastflow bottles (which make him work) onto the easier preemie teats - but the big thing is that they are no longer having to feed him by tube :happydance:

Discharge Planning Meeting this afternoon - *on what would have been Andrew's due date* - fingers crossed everybody!


----------



## embojet

Marleysgirl said:


> The NICU nurses say that Andrew is taking EBM from a bottle just fine - when he's tired, they switch from the Breastflow bottles (which make him work) onto the easier preemie teats - but the big thing is that they are no longer having to feed him by tube :happydance:
> 
> Discharge Planning Meeting this afternoon - *on what would have been Andrew's due date* - fingers crossed everybody!

Thats fantastic news1 fingers crossed for you. Well done Andrew! :happydance:


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## Foogirl

Brilliant! Everything is crossed. Glad the bottles are working out well. I'm sure with some work he'll take to breastfeeding in time.


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## Jemma_x

Great news hun x


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## Marleysgirl

YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES :happydance: YES

Guess who's coming home?

I'm rooming in tomorrow (Weds) night, and so long as there are no last minute hiccups, Andrew comes home on Thursday!!!!!!!!!!!

Oh, and he suckled for about 10 minutes today, despite being half-asleep, without losing the latch!


----------



## embojet

Well done Andrew :yipee:. I knew it would be good news! :happydance:


----------



## sherryberry79

Oh that is fantastic news, I am sooooo pleased for you all. Well done Andrew you little star!!

You must be so proud of him and so EXCITED!!! I hope the rooming in goes smoothly, and keep us updated once you get home :hugs:


----------



## Jemma_x

Thats brilliant news hun :happydance:happydance:


----------



## Foogirl

Marleysgirl said:


> and so long as there are no last minute hiccups, Andrew comes home on Thursday!!!!!!!!!!!

Aw man, that's not right, they won't let him home if he has hiccups....:nope::cry:



:winkwink:



Great news on the breastfeeding too. What a clever boy.


----------



## BBonBoard

congratulations.


----------



## premmiemum123

Brilliant news, good luck and hope all goes well...x


----------



## Dona

Great news hun! xxx


----------



## Marleysgirl

*He's Home!*​
Excuse me if I'm too busy to post for a few days! :happydance:


----------



## maxsmummy

congratulation!!!!!!!!!!:happydance:


----------



## Foogirl

Hurrah!!!!!!!!!!!!!!!!:happydance::happydance::happydance:

Do you feel like a real mum yet:thumbup:


----------



## Marleysgirl

Thanks to Daddy pacifying Andrew with a top-up feed at midnight (and then falling asleep with him on his chest on the sofa eeeeeeek!!!), we're now on a feeding schedule that is identical to my expressing schedule, so I know where I am and how much time I have to get onto the laptop and update you all ;)

Andrew nearly didn't make it home yesterday. Firstly the docs weren't happy that he'd lost 12g overnight, and were reluctant to send him home after a weight loss, but I begged and they relented; I'm on strict orders to wake him to feed every four hours, and the community nurses will be weighing him to check. And then we had him in the buggy, literally ready to walk out of the hospital, when the fire alarms went off! Nobody's permitted to leave then, as they need to control numbers and because the lifts are out of action ... was a false alarm, but kept us there another 20 minutes.

So here we are, now at home. Andrew's taking about 20 minutes of intermittent BF, his technique and stamina have improved dramatically since we started him on bottle-feeding as a supplement rather than tube-feeds (in the hospital); he's then supplemented with upto 60ml of fortified EBM - generally multicoloured, as we've got three different vitamin supplements to add!

He says he's not used to the dark, as there were always lights on in SCBU, but he'll get used to it so long as Mummy is there to talk him to sleep. And the ceilings look very different. Car journeys are boring, he can sleep then. And his bouncy chair makes a nice change to the basket, as then he can watch Mummy in the kitchen.

I think we'll be regular visitors back to hospital, as he's going to have another hearing test; follow-up appointments with the neonatal consultant; RSV jabs; and physio want to see him to get a benchmark for possible future visits.

But in the meantime, I get to enjoy my baby at home - and for the first time, I don't have to get dressed to go up to the hospital :)


----------



## Foogirl

The first night Abby was home, I got up at 3am to give her a feed and fell asleep with her on my chest. I awoke with a start about an hour convinced she had fallen off. She was so tiny and light I couldn't feel here there. But it felt fantastic:happydance:

It sounds like you have got it all sorted and are getting into it very well. Abby stayed on her schedule for a couple of months. It was great! She also was well used to noise so I didn't have to tiptoe about when she was sleeping.

Glad you are enjoying it - especially being slummy mummy. 10.15 I'm still in my dressing gown!!:thumbup:


----------



## morri

Great , especially since hes fine on exactly his due date :thumbs up:


----------



## Jemma_x

Congats hun x


----------



## AP

Thats fantastic that he's finally home - its funny, preemies hate the dark! lol! Mind you I'm a total goth now and I was born at 29 weeks!


----------



## Floralaura

So glad you have your Baby at home with you! x


----------



## embojet

:happydance: Well Done Andrew :happydance:. He has done so fantasticly well, what a journey you have had. Welcome home Andrew :flower:. You have such a fantastic time ahead of you :happydance:


----------



## nkbapbt

Welcome home Andrew!!!


----------



## sherryberry79

Marleysgirl, what fantastic news, you must be so relieved and excited to have him home! Is he keeping you on your toes? Your little boy is adorable and I am sooo pleased he is home now where he belongs, enjoy being a family x


----------



## Foogirl

Come on......look, I know you're busy but......how y'all doin? I'm so impatient for an udate!


----------



## Dona

yeah me too and we need some new picts!


----------



## Marleysgirl

Patience, patience ....


----------



## Marleysgirl

We're doing just fine ... 

We were sent home with instructions to feed Andrew 60ml EBM every four hours, waking him if necessary. Well, that got knocked on the head on the first day as, if we woke him, he wasn't sufficiently alert to attempt BF first; plus he shouted for more at his 11pm feed and wouldn't settle without a second bottle. So now we've switched to demand-feeding, he's taking about five feeds a day, success on the breast is variable (he just had a good session) and letting him have as much EBM as he wants by bottle - so long as it adds up to the same 360ml/day. He's being a piggy and taking more! And he's happier.

The nurse said he was a little cool at Saturday's temperature check, so he's now under layers and layers of blankets and wearing a hat indoors. He checked out fine today. All those tables of "if it's 18 degrees he needs a sheet and two blankets" ?? Pah. More like a folded flannel sheet and about four layers of blankets.

Taking him to the Post Office and Tescos tomorrow - woohoo! My life is just so exciting.

Oh, and no watching In The Night Garden or other children's stuff. The first television programme he's shown interest in? Red Dwarf. I'm soooooo proud of him :D

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/P1020836.jpg


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## Jemma_x

He's gorgeous hun, how much does he weigh now??


----------



## tillymum

awww he's such a cutie! sounds like he likes his food and is settling in at home just fine! Congrats again!


----------



## Marleysgirl

Jemma_x said:


> He's gorgeous hun, how much does he weigh now??

He lost a little weight at the start of last week when I was attempting to feed him solely by BF, so he's regaining that now - 4lb 8oz.


----------



## embojet

He is looking so handsome! Demand feeding is definately the way to go IMO, sounds like you are all doing great. Have fun at Tesco and the Post office showing him off to the world!


----------



## Foogirl

Marleysgirl said:


> The nurse said he was a little cool at Saturday's temperature check, so he's now under layers and layers of blankets and wearing a hat indoors. He checked out fine today. All those tables of "if it's 18 degrees he needs a sheet and two blankets" ?? Pah. More like a folded flannel sheet and about four layers of blankets.

He is looking lovely. So sweet and peaceful. 

I so agree about the useless indications for temerature. Abby is now 6 months and her room hovers between 18 and 21. She has a gro-bag, a sheet and a folded cellular blanket with a crocheted blanket on top - and that just about keeps her warm enough!! One hint is, when he cries and you can't work out why, he'll be cold. It took us a while to work that one out. In the early days she was well wrapped up, even had a cardi on at night and that was in the summer.

Enjoy taking him out and showing him off. It is lovely to see people's reactions. I swear Abby still thinks her name is "awwwwww" The first time I went round tesco with her she had been very upset in the car seat so I just carried her on my shoulder, it was brilliant hearing everyone cooing at her.

Keep the updates and pictures comin! :hugs:


----------



## premmiemum123

Emily's temperature was always 36.2 even with five blankets, swaddled, vest, sleepsuit, hat, and cardi...I swear the thermometers were rubbished as she always felt toastie so don't worry too much about it. 
As for the weight loss, it is probably just Andrew settling into BF. 

Have fun taking Andrew out, the first time people see the actual size of your baby (like Foogirl says), they can't believe it, I think you will get stopped in your tracks several times for people to coo and admire him. Even now Emily is 9lb, we still get stopped in Tescos by staff and customers who admire her as a newborn. 
Wait until you tell them how old he is, watch their jaws drop to the floor, it is so funny! 
Have fun and enjoy every minute of your time together...they grow so quickly once they are home....x


----------



## Dona

Andrew is just so adorable. I love his knitted wee outfit too. I agree with the others on real age versus actual size. :haha::haha:

Andrew will thrive and grow so much at home so cherish every moment. We took Archie home at 7lbs, now he is 18 and a half pounds and I can't remember him being that small never mind 2lb 6oz! :cloud9::cloud9:

Congratulations again hun xxx


----------



## Marleysgirl

A good day today - for a start, I found that NICU hadn't thrown out my surplus frozen EBM, so I've brought that home to replenish the stocks, which means I don't have to switch to formula until the Dom Perignon Domperidone kicks in.

Andrew attended his Physio appointment, and they say he has balanced and expected movement - basically all his limbs react and work in the correct way! Back in three weeks for his "one month" check-up.

(eta - heck, don't they have  on this BB?)


----------



## embojet

Gald today went well. Just wait until that Dom Perignon kicks in!! :wine: :rofl:


----------



## premmiemum123

Emily loves her Champers, it tastes better than Ranitidine, is Andrew on that as well? Am trying to get Emily off the drugs by trying alternative therapies, am going to try Cranial Osteopathy. A lady at Baby Massage gave it a go and she now has a different baby (happy) with reduced reflux...! 

Oh see if you can get free baby massage session for Andrew, does our babies the world of good!

Glad you are enjoying having him home...x


----------



## Marleysgirl

Premmiemum, the champers is for me to increase my BM production, not for Andrew! Luckily he doesn't appear to have a problem with reflux, and he only gripes when I don't take the time to wind him properly. 

I do want to take him to Baby Massage but was warned off taking him to any organised baby groups for a few months as he is still so small, NICU were worried that he'd be more susceptible to any viruses that are around this winter. My OH (without even realising) gives Andrew wonderful massage anyway.


----------



## avabear73

Hey Marleys, thought I'd sneak in and see how you're doing :) Has the Domperidone worked? As for baby massage, if you go to youtube there are educational videos to keep you going until you can get to a class although sounds like OH is doing great anyway!


----------



## bumpsmum

Hi Marleygirl, just catching on on your wee superstar so glad he's home and doing so well, you must be chuffed to bits :cloud9:. I agree you will have lots of admirers showing off your wee cutie and those new bits are adorable.

If your really keen on baby massage ask your HV to come to your house for 1:1 mine comes to see us (although mostly to keep an eye on me I think) but worth asking as I feel Matthew is now to big and wriggly to get the benefit of it, but Andrew will really enjoy it xx


----------



## Foogirl

avabear73 said:


> Hey Marleys, thought I'd sneak in and see how you're doing :) Has the Domperidone worked? As for baby massage, if you go to youtube there are educational videos to keep you going until you can get to a class although sounds like OH is doing great anyway!

Great tip! Thanks.


----------



## Marleysgirl

Thanks, will look at Youtube in the morning.

The Domp is working but not much. Production has increased from around 20ml to around 40ml a session, which means I'm expressing about half of what Andrew needs. I'm also now trying Fenugreek as well, three days in, but no difference. Will speak to the outreach midwife tomorrow but think Andrew will have to go onto formula for half his feeds soon, unless something miraculously happens.

eta - Going to increase the fenugreek- I don't yet smell of pancakes, so the dose can't be high enough!

Anyone else find that their EBM production doesn't increase if they pump more often? I've tried increasing from 6 (4hrly) to 8 (3hrly) pumps but I just get less each time. And if I skip a pump, I get double next time. It's as if my body can only produce so much regardless of how often.

Andrew went on a train and a tram for the first time today! And we changed him and bottle-fed him in public (Arndale centre) for the first time too! :happydance:


----------



## Jemma_x

Any new pics hun?? Bet he looking so gorgeous


----------



## Marleysgirl

Morning All

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/P1020840CIN.jpg


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## maxsmummy

arr he is looking so lovely!!!!!!!!!! hes really gorgeous bet yr really proud of yr brave boy!!!!!!:hugs: hes so scummy really changed!!!:thumbup: xxx oh and i love his little outfit its brill!!!!!!!!!!!! xx


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## bumpsmum

oh hes too cute for words xx


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## Foogirl

He's looking really well, I'm always amazed how our babies go from a teeny scrap to a strapping bairn so quickly. He is gorgeous and I do love the outfit - where do we get these from?



maxsmummy said:


> hes so scummy

:rofl: such an unfortunate typo. We shall assume you meant scRummy :haha:


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## Emma.Gi

Awww, he is absolutely adorable!


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## avabear73

Wow he looks so much bigger!!! So amazing how quickly they grow, sometimes I think that the smaller they are when they're born, the quicker they want to catch up!! Love his CIN outfit BTW!

As for the Fenugreek - there are also others you can take, Stinging Nettle and Milk Thistle can help too. Don't know if I've told you this before but I bought a great book about milk supply, loads of tips and information. 

The Breastfeeding Mother's Guide to Making More Milk


----------



## maxsmummy

Foogirl said:


> He's looking really well, I'm always amazed how our babies go from a teeny scrap to a strapping bairn so quickly. He is gorgeous and I do love the outfit - where do we get these from?
> 
> 
> 
> maxsmummy said:
> 
> 
> hes so scummy
> 
> :rofl: such an unfortunate typo. We shall assume you meant scRummy :haha:Click to expand...

yep i meant scRummy:blush: i hadnt been up long lol!!!!!!!
also would love to know where to get his lovely outfit xxx


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## Jemma_x

He's gorgeous x


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## Marleysgirl

maxsmummy said:


> yep i meant scRummy:blush: i hadnt been up long lol!!!!!!!
> 
> also would love to know where to get his lovely outfit xxx

I knew you meant that! (hadn't noticed the typo actually)

The CIN babygro came from Asda George (tiny baby size, naturally!)


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## premmiemum123

Wow he has grown...looks so adorable...you must be so proud of your little fighter...how lovely...x


----------



## sherryberry79

Awwww he looks gorgeous, and the outfit is gorgeous too!


----------



## bexie1985

congrats, fab news that hes putting on weight and fighting!! :) xx


----------



## grumpymoo

He is sooooo sweet! I know you are still struggling with your expressing but you sound like you are doing really well to me. It must be frustrating not making enough but you are still giving him a fantastic start :happydance:

I struggled in hospital expressing in (only ever got 10/20ml) and still do now, but am fine feeding Rose. Have no idea why?!!!


----------



## Foogirl

grumpymoo said:


> I struggled in hospital expressing in (only ever got 10/20ml) and still do now, but am fine feeding Rose. Have no idea why?!!!

Crap pump?


----------



## grumpymoo

Foogirl said:


> grumpymoo said:
> 
> 
> I struggled in hospital expressing in (only ever got 10/20ml) and still do now, but am fine feeding Rose. Have no idea why?!!!
> 
> Crap pump?Click to expand...

:happydance: you are funny.

dont think so as had one a home lent from the hospital and different ones to use at both the hospitals.

more like crap boobs!:dohh:


----------



## premmiemum123

grumpymoo said:


> Foogirl said:
> 
> 
> 
> 
> 
> grumpymoo said:
> 
> 
> I struggled in hospital expressing in (only ever got 10/20ml) and still do now, but am fine feeding Rose. Have no idea why?!!!
> 
> Crap pump?Click to expand...
> 
> :happydance: you are funny.
> 
> dont think so as had one a home lent from the hospital and different ones to use at both the hospitals.
> 
> more like crap boobs!:dohh:Click to expand...

LOL, I had crap boobs too! My nipples are a funny shape now from 2.5 months of being pumped by Medela...aaagh...


----------



## bumpsmum

I struggled too and weaned Matthew onto formula at 10 weeks, my nips also went a bit wonky from pumping they do go back to normal quite quickly if that helps xx


----------



## Marleysgirl

I'm such a bad correspondent ...

Andrew is doing just fine. He weighed in at 5lb 10oz this week, a gain of almost 10 ounces in a week, which the midwives are putting down to his 1 bottle of formula a day (nutriprem2). He's had to progress to the Tiny Baby clothes rather than premmie clothes! He's had his second RSV jab, and heads back to hospital for his hearing test this week.

Today my parents & nan visited, so we got a photo of the four generations together:

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/P1020850.jpg


----------



## Jemma_x

Aww, glad he's doing well hun. Lovely photo


----------



## Foogirl

Glad to hear he is doing so well. Are you enjoying it too?


----------



## amyblackstone

Glad to hear he is doing great! :)


----------



## Marleysgirl

foogirl said:


> glad to hear he is doing so well. Are you enjoying it too?

:D :D :D :D :D white


----------



## Foogirl

Marleysgirl said:


> :D :D :D :D :D white

:rofl: :thumbup:


----------



## premmiemum123

Wow great photo! Glad you are enjoying life at home with Andrew...it only gets better and better...x


----------



## Marleysgirl

:( a bit ...

Andrew had his follow-up hearing test yesterday. He'd had two attempted tests whilst in NICU, the first one he was too unsettled, the second was inconclusive, so he was called into the Audiology department for a thorough check.

It appears that his auditory nerves (between the cochlea and the brain) are not functioning correctly. They feel that some sound is getting through, as he shows a startle reaction to loud noise, but they suspect that the message is jumbled on reaching his brain, rather than clear. This means that he has some hearing difficulty, but it could be simply slightly hard of hearing, it could be worse.

The audiologists are unable to tell us more until Andrew is around 6-8 months corrected, as they need him awake and reacting to assess the clarity of his hearing. They're going to repeat these tests in about 8 weeks time though, as apparently there is a small chance that - due to his prematurity - his auditory nerves are still developing and the brain responses could improve.

Off I now go to find out about baby signing, just in case .........


----------



## bumpsmum

:hugs::hugs::hugs: Andrew has shown you he is a little fighter hun, this is just more obstacle he'll overcome, im sure this next test will be more positive :hugs: x


----------



## premmiemum123

Fingers crossed his auditory nerves are still developing, he is still young and his body is still developing...big hugs. x


----------



## Foogirl

Oh dear, there's always something with our wee ones isn't there! It is frustrating that "only time will tell" line we get all the time. But at least if you are aware there may be an issue, you can begin to look into solutions. It is a good sign that some sound is getting through. Things can only get better huh?

We're going to be doing baby signing even though there is no issue with Abby's hearing, I like the idea she will be able to communicate before she can speak so I reckon it's worthwhile doing anyway.


----------



## Marleysgirl

Still waiting to hear about whether the baby signing is going to be worthwhile (and whether we can get any help towards the cost, think I'm going to try The Family Fund again!).

Woohoo for this week - Andrew weighed a stonking 6lb :happydance: He's growing more long and less chubby, so babygros are now either tight on his legs & feet or really baggy around his chest.

As regards the hearing, we had men drilling the house walls yesterday for cavity wall insulation, and Andrew definitely heard that!


----------



## Foogirl

That's great news. What a wee bruiser!


----------



## premmiemum123

Wow he growing fast...he will be in 0-3 clothes before u know it...bless him...x


----------



## Marleysgirl

Wow, I am such a bad correspondent, I haven't updated this thread since the start of December!

Andrew continues to grow a-pace, at his last weigh-in just before Christmas he was 6lb 11oz. He has now been discharged by the Outreach Midwife team (part of NICU), and is under the care of the HVs. I have yet to see one of them, but hopefully someone is phoning me on Thursday to sort out a visit. Luckily I only live three streets away from the clinic and they have a Thursday drop-in, so hopefully I can take him over there weekly or fortnightly for regular weigh-ins to monitor his progress.

He had a brilliant Christmas. He got some toys which won't really be appropriate for another 3-6 months, and some clothes that won't fit for a while (but which were cheap in the sale!). Main things received are a Rainforest bouncer chair, which he much prefers to the basic cloth bouncers he had before; a safari "gorilla" nest/sit-me-up (Mothercare); a bumbo; and a high-chair (for the future). 

He's sucking on his hands a good deal when he's lying on his tummy, but still hasn't co-ordinated keeping them at his mouth when lying on his back, so we've succumbed to giving him dummies. He's only grasping our fingers too, not yet grasping any toys that we put within reach. Has anyone else found problems with the usual "first" toys being too big for their preemie's hands to grab?

He's got his first Paed & a repeat Physio appointment on Thursday, hopefully we'll make it although we've got loads of snow now (about 8 inches). I'm going to ask the Paed about weaning, even though he's not showing signs of being more hungry, I'm wondering whether it'll help him put on more weight.

He's trying to rock the base off his basket right now, getting quite vigorous in his attempts to roll over!

We progressed from Micro into Size 1 nappies a few weeks ago, and I'm on the last pack of Size 1s now, going to move him into Size 2s (as I've got those stockpiled) soon. Some of his tiny 5lb clothes still fit (particularly his snowsuit), and some of the 6lb clothes are too short in the body! 

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/P1020901.jpg


----------



## sherryberry79

:thumbup: Sounds like Andrew is doing you proud, and he is looking so handsome too! 

Are you going to start weaning him soon then? I am totally confused over the whole weaning issue, but it does not feel right for us to wean just yet.....maybe another six weeks or so, we'll see.

Amelia is being breast/formula fed. The formula that they put her on is called infatrini, and it promotes catch-up growth. It has a very high calorie content and she seems to be growing well. On 22nd Dec she was 6lb 7oz and on 4th Jan she was 7lb 11oz, and she was not very well during that period too! She is still tiny for her age, but I think she is ganing more quickly than she would without the Infatrini. Maybe you could try it for Andrew, it's on perscription, so it's free!

With regards the dummy and perpetually sticking it back it his mouth, I TOTALLY sympathise:baby: Millie loves her dummy too!


----------



## Jemma_x

Hes gorgeous hun x


----------



## Dona

Great update - I always look forward to them. Andrew is coming on. He looks devine in his santa suit. 

I totally agree with weaning now, it helped heaps with Archie's weight gains. But its totally upto you guys what your going to do. 

xxx


----------



## Marleysgirl

That's an amazing weight gain by Millie, Sherry! How much / what size feeds is she getting?

I've got NutriPrem2 formula milk on standby for Andrew, but the Midwives were keen that he stay on as much EBM as possible and I'm now producing enough for him - 6 x 100ml feeds a day (he won't take any more than that) - so we haven't opened the formula milk. I'll see what the Paediatrician says on Thursday (if we make it) as regards his growth; I'd rather early wean than put him on formula really, and he'll be 5 months on the 19th (Bliss recommend 5-7m actual).


----------



## Foogirl

Such a gorgeous wee boy and doing so well.

His weight gain seems ok, is there any reason you are looking to increase it? I agree about weaning rather than formula though. If he is ready for it, then it would seem to be a better option.

I totally agree about the toys. They are too big for hands and mouths!

We got one from Tesco, it's a fluffy cube thing with cloth handles which have crackly stuff inside so make a great sound. It's also got plastic rings off it and other random bits sticking out of it and a jingle/jangle ball thing in the middle. She has only just managed to pick it up herself, but has been grabbing at the various bits and pieces of it for a couple of months. Before that we just gave her the smallest of her teddies to grab at and a rattly thing we got from my sister which she had for my nephew ten years ago.


----------



## grumpymoo

He is coming along a treat! you must be soooooo pleased. Bet you were more excited about the toys than he was though, we were with Rose's presents:dohh:


----------



## Marleysgirl

Well, Andrew's Physio appointment was cancelled but the Paediatrics appointment went ahead as planned. The results are:-

She's referring him to the eye specialists as he doesn't seem to want to focus on and follow her face. (That's coz he's too easily distracted!) I think she's worried that he may still have eyesight problems from his cranial bleed.

She wants us to up his EBM to 6 x 110ml a day for a week. I don't have big hopes on this, he rarely wants the full 100ml. If that doesn't up his weight gain, then I think she's threatening to mix EBM with formula.

She wants us to hold off any thoughts of weaning until after the next appointment in 4 weeks, when he'll be 24 wks (13 wks corrected). She didn't seem fond of the Bliss guidelines of 5-7 months actual, but that may have been because he was soooo small.

Other than that, he's doing fine :~

ETA - Just had a chat with DH and we've decided we're going to go ahead with plans to slowly wean Andrew, regardless of the Paediatrician's opinion! We know him best, and we both feel it's the best way of getting extra calories inside him.


----------



## AP

Hey honey!

Was just catching up there! What you are doing sounds similar to what we did with Alex.

She too wasn't drinking much at all, we struggled to get 100mls down her. After a good few weeks of this and us stressing that she wasnt getting enough, she suddenly hit 5oz. She finishes a 5oz bottle most of the time now. I think, what also helped, was changing bottles! We found that she liked NUK teats, so we got a few bottles and we see the difference in the time it takes to feed her too!

How long does he take to feed?

I asked the HV about this, and she asked me about my own family > are we small too?
We are little people indeed, and perhaps Alex is just going to be small too, and doesnt need as much!

We were swaying about weaning too. We started giving teeney bits of rice but she hasnt been that interested until 12-13weeks corrected, shes slowly taking more of an interest now.

I was one to mix ebm and formula and I do believe that helped, and its easy to go back to ebm if you want. We just moved to formula ourselves though!


----------



## Marleysgirl

Thanks Sb. 

Andrew feeds pretty darn quickly for the first 80ml or so (10 mins), then takes just as long over the last bit of the bottle. I've got two different size bottles (we're on Avent), I'll have to keep a note of whether he feeds better from the larger or smaller bottles, I haven't picked up a pattern so far.

We've also got the problem that he's beginning to sleep though regularly, which means he misses one of his six feeds - but I didn't want to tell the consultant that! Doesn't help with getting more milk down him during the other feeds, it's not like he wakes up starving or anything.

Both me and DH are small (5ft4 & 5ft7), but neither of us are slightly built and nor is Andrew, he's chunky!


----------



## Marleysgirl

Update ...

He's just had 100ml EBM (from a small bottle), and then took about half of his first baby rice feed (1tsp mixed up runny). And I'd swear some of it made it down his inside, as well as down his outside :D He seemed to enjoy it, was opening his mouth ready for the spoon towards the end.

I count that as a success!


----------



## Jemma_x

thats great hun


----------



## Foogirl

Yay! It is fab when they do that for the first time!


----------



## bumpsmum

yeah another first! sounds like he's ready for it to me hun. As you say, you and his daddy know him best xx


----------



## Foogirl

I saw my health visitor today at the clinic and I just had to laugh. She was so adamant that Abby shouldn't be weaned until 6 months corrected and yet when I was telling her how Abby was doing with the purees and stuff she said I should move on to stage 2 stuff and Abby isn't even at the 6 months corrected stage yet!

We do know our babies best.


----------



## Marleysgirl

So the one thing I'm learning is, when I eventually see my HV, don't have any expectations - I know my baby best ;)

eta. This afternoon Andrew has taken a teaspoon (mixed up) of baby rice together with a teaspoon of apple puree, he enjoyed it (started anticipating the spoon), and it's stayed down. Apple for another two days, then we'll try some carrot. 

Experts schmexperts. What do they know.


----------



## Marleysgirl

Damn, only 100g increase in 10 days - he's now 7lb 3oz.

I really really don't want to have to start giving him NutriPrem2 on a regular basis, just so that he gets the extra calories, I'm proud that he's just on EBM but it's obviously not enough. He won't take more at a bottle-feed either, I've been trying that.

On a plus note, he adores carrot, likes apple, and dislikes banana :)


----------



## premmiemum123

Emily dislikes banana...must be the texture or something...I would not worry weaning is trial and error, lots of error on my behalf, screaming fit at fish pie tonight, Emily hated it.

Good luck, hope Andrew starts to put on weight soon, apparently when you start weaning their weight gain can slow down as they are using the extra calories to digest food...x


----------



## Marleysgirl

Okay, I caved ... I gave him NP2 for his late-night feed last night, he obviously needs the calories.

I've also just had my first complete night's sleep for 5 months - I'm normally up around 3am to express. I figure, if he's not going to wake up in the middle of the night, why should I? So I didn't ... He didn't wake, I didn't pump ... I got over 200ml out this morning (10pm last pump, 8am next) so my body obviously just stockpiles EBM!

Does anyone else have a "thing" about dressing their babies? (Forgive me if I've ranted about this before) So many of the clothes that fit Andrew are designed for newborns, they're really nice but "cute". He's now 5 months, I want to dress him less as a newborn and more towards toddler! Today he's in his Mothercare jeans and a hoodie.


----------



## Dona

Well done on the weaning. Sounds like Andrew is taking to it pretty well. Keep it going and eventually you will see Andrew have bigger weight gains. Just now he wont get many calories from fruit and veg purees. Its when you move on to protein that makes all the difference. 

I totally understand that you would like to feed Andrew solely on EBM and boy you have done well so far to keep giving him it. But sometimes wee prem babies need a little more. 

A good place to dress your wee man like a wee man is GAP. I was like yourself and hated Archie being in 'baby stuff'. 

Maybe post some new picture of Andrew in his wee man clothes soon?

Dona and Archie xx


----------



## CazH

Nutriprem 2 was my godsend too!! I used to and still do dress Freddy in NEXT clothes as they are real trendy you will find girls have lots of choice in the market and boys only have few choices especially in the supermarkets. Gap are lovely but mega expensive also try BHS or M&S. :baby:


----------



## Marleysgirl

Big boy clothes!

https://i306.photobucket.com/albums/nn274/Tigsteroonie/P1020965.jpg

My HV came yesterday. Unannounced, as I never received the letter telling me of the appointment. Everything went okay, it took ages to explain all his hospital referrals (physio, hearing, eyesight) and then longer to explain the tv documentary! 

The good news is that she's recently read research that says early weaning is beneficial for preemies in terms of increasing their calorie intake, in that the food is in addition to milk, so she is totally okay with us starting to wean Andrew! Who had Farleys rusk yesterday, and just lurrrrrrrrrrrrrved it (takes after his Mum) :D


----------



## bumpsmum

wee darling he's really coming on a treat eh. Lovin the cool guy look, totally get what you mean, when Matthew was smaller it was all baby blue and beige etc...... but I think he really suits navy and red in particular.

Maybe not to everyone's taste but there is not much out their for boys but primark are good for long sleeve t shirts with various logo's like 'mine's a pint' that kind of thing and jeans and cords.

I find tesco good too the early baby range and newborn/ 0-3 range was good and trendy and some t shirts we got as gifts said 'little but loud' 'little man, big voice' etc....

While im on topic (or rather gabbing too much) I seen a website a while back with logo tshirts, bibs etc for BF babies I thought was cool saying ' I dont get my milk from any old cow, I get it from my mummy'! cracker slogan but not sure Id want my baby in public with it :blush: xx


----------



## Marleysgirl

Whatever we're doing, we're doing it right - a stonking 8oz weight gain in 6 days, Andrew now weighs 7lb 11oz!

(Actually, what we're doing is: 4 milk feeds of 130ml during the day, a 5th at night but only if he wakes; one of those feeds is NutriPrem2 for the additional calories; and puree weaning one meal a day in addition to all the milk).


----------



## Foogirl

Marleysgirl said:


> Whatever we're doing, we're doing it right - a stonking 8oz weight gain in 6 days, Andrew now weighs 7lb 11oz!
> 
> (Actually, what we're doing is: 4 milk feeds of 130ml during the day, a 5th at night but only if he wakes; one of those feeds is NutriPrem2 for the additional calories; and puree weaning one meal a day in addition to all the milk).

Well done! Glad it is all working out for you.


----------



## Jemma_x

thats great news hun x


----------



## Dona

What a fab update. Its seams like Andrew loves his Grub! Go Andrew with the big weight gain. Look forward to the next update xx


----------



## Marleysgirl

Hospital check-up day today ...

Firstly, the weigh-in. Well, somebody's scales must be wrong, because he weighed 8lb at the HV clinic last Thursday and only 1oz more at the Hospital today, and there's no way he's only put on a single ounce after the last few weeks. Mind you, he did do a poopsplosion yesterday :rofl:

Next, the Paediatrician who, unsurprisingly, wasn't happy with his weight gain. (350g in 4 weeks) Given that we've managed to increase his milk intake by 30% and he's also now on purees, there's not many options. So he's back on EBM Fortifier powder, I brought home two boxes (300 sachets) today. So long as she doesn't make us wake him overnight for a feed, I'll do pretty much anything. She was happy with his reactions (he smiled at her) and his grasping (he yanked her NHS ID badge chain), so it was generally positive. Back in six weeks.

Then a brief visit to see our pals at the Placenta Clinic, where one of the midwives gave birth 2 weeks early and her baby has an auditory nerve disorder similar to Andrew.

Lastly, a Physio check-up. They are happy that he is now holding his head centrally most of the time, and also impressed by his grasping capability (both hands evenly). We've been advised to do more tummy-time, which probably means more time spent in our bed as it's too cold at floor level. He demonstrated his commando-crawl up the change mat (with assistance). Back there in seven weeks.


----------



## Josephs_Daddy

Excellent!! Congratulations.!!!:happydance:


----------



## grumpymoo

Well done Andrew!:happydance:(could of held onto that poo for a while longer though:wacko:)


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## Laura2919

Marleysgirl said:


> But on the good side :happydance: Andrew came off the ventilator about 4 days ago (less than a week old), and yesterday he spent some time off the Cpap system too, as his lungs are so strong, thanks to those steroid injections..

Thos injections are the best arent they!! I had them and I am sure thats why the twins were so good with their ventilation and cpap x


----------



## Laura2919

Marleysgirl said:


> Hospital check-up day today ...
> 
> *Firstly, the weigh-in. Well, somebody's scales must be wrong, because he weighed 8lb at the HV clinic last Thursday and only 1oz more at the Hospital today, and there's no way he's only put on a single ounce after the last few weeks. Mind you, he did do a poopsplosion yesterday* :rofl:
> 
> Next, the Paediatrician who, unsurprisingly, wasn't happy with his weight gain. (350g in 4 weeks) Given that we've managed to increase his milk intake by 30% and he's also now on purees, there's not many options. So he's back on EBM Fortifier powder, I brought home two boxes (300 sachets) today. So long as she doesn't make us wake him overnight for a feed, I'll do pretty much anything. She was happy with his reactions (he smiled at her) and his grasping (he yanked her NHS ID badge chain), so it was generally positive. Back in six weeks.
> 
> Then a brief visit to see our pals at the Placenta Clinic, where one of the midwives gave birth 2 weeks early and her baby has an auditory nerve disorder similar to Andrew.
> 
> Lastly, a Physio check-up. They are happy that he is now holding his head centrally most of the time, and also impressed by his grasping capability (both hands evenly). We've been advised to do more tummy-time, which probably means more time spent in our bed as it's too cold at floor level. He demonstrated his commando-crawl up the change mat (with assistance). Back there in seven weeks.

Oh no for the Poo!!!! lol. 
Well done Andrew!!! x


----------



## alibaba24

Marleysgirl said:


> BIG NEWS!!!!
> :happydance: :happydance: :happydance: :happydance: :happydance:​
> Andrew was promoted from the NeoNatal ICU to the High-Dependency room last night, he's doing that well!!!!
> 
> https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/DSC01503.jpg

awwwwwwwwww!!!!! :cloud9:

xxx


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## Foogirl

Yay Andrew. Hopefully the weight gain will sort itself out in time.


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## embojet

Thats fab news. Glad he's doing so well, I'm sure the weight gain will come x


----------



## Anna Barry

Well done Andrew!!:happydance:


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## bumpsmum

well done Andrew your really coming on a treat. How old is he now? x


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## Marleysgirl

bumpsmum said:


> well done Andrew your really coming on a treat. How old is he now? x

He's now 24 weeks, 13 weeks corrected. He has his "half-birthday" later this month, and this weekend we're celebrating the anniversary of his conception!


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## premmiemum123

Excellent news he is doing really well...go Andrew...x


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## Marleysgirl

Curious little health "issue", not that we're worrying overly about it. The day after his hospital check-up, we noticed a tiny blood-red pinprick in his eye, next to the iris. Looks kinda like a burst blood vessel. It's now shrinking and fading, and the Paediatrician has decided not to get it checked immediately but to wait and see if another appears, or whether it was indeed just a burst blood vessel from a crying session. He's due at the hospital this Friday for his RSV jab anyway, so they're going to check his blood pressure then. 

Cute photo from the weekend, he's beginning to enjoy spending time on his playmat.

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/P1020985.jpg


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## Sam9kids

Oh hes gorgeous! xx


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## Marleysgirl

Sam9kids said:


> Oh hes gorgeous! xx

Why thank you!


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## Foogirl

Hey! He's the right way up this time. Those cheeks look like they are great for blowin raspberries.

Gorgeous.


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## seekingbaby#1

Andrew is a cutie pie!!! And he's getting so big


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## Dona

Awww hes coming on a treat xx


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## CazH

What a cutie he is gonna melt those girls hearts!


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## morri

He looks gorgeous :)


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## sam76

Hes coming along fab!!!! well done


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## Marleysgirl

It's Andrew's half-birthday tomorrow and I wanted a weight for the records, so I dragged myself out of bed early today so that we could make it to the HV clinic before the crowds :D

Andrew is now a whopping 4.025kg - 8lb 14oz in old money. That's another 5 ounces since last week so, despite him turning his nose up at large bottles of EBM, he's still putting on the weight. 

We started on breakfast this week (fruity porridge), and he glared at me as if to say "How dare you try and feed me at this unearthly hour!" :D I am also now going to start him on protein with his tea (meat, fish etc).

The bloodspot in his eye has faded and no more have appeared, so I'm stopping worrying about that. They didn't manage to check his bloodpressure at the hospital, had half-a-dozen attempts but the machine didn't want to work with such a tiny armband. He seems fine in himself.


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## grumpymoo

Well done Andrew, what a trouper!

you must be so pleased, he has come such a long way.

Good luck with the new food. I am going to try Rose with chicken this week too.

I love the pic too!


----------



## Foogirl

Yeah, I need to start Abby on meat and stuff. So far we've stuck with veg, lentils and stock. Anabel Karmel does a great recipe for lentil soup:thumbup:


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## Marleysgirl

I know they say to start with chicken and fish, but I actually froze some cubes of puree'd mince last week. (BTW puree-ing meat is bleurgh, no wonder they say you should wait until baby can handle lumps!) 

Andrew certainly liked the taste (mixed with potato, carrot & cauliflower) and it hasn't made a reappearance yet.

Picked up some bargain price (29p) baby spaghetti in B&M earlier, that's two bags of spaghetti I have now - hope Andrew likes pasta!


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## bumpsmum

ohhh he is coming on a treat xx


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## Marleysgirl

*Happy
Half-Birthday
to my beautiful, miraculous little boy

I love you so much, 
my precious
x*​


----------



## bumpsmum

happy half birthday Andrew xx


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## Marleysgirl

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/P1030006.jpg


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## Foogirl

:rofl:

What an excellent picture.


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## Jemma_x

aww hes gorgeous hun x


----------



## seekingbaby#1

Wow, he's such a cutie!!!


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## sherryberry79

Awww he is a right 'lil looker!


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## bumpsmum

that pic is fantastic, one to show his first girlfriend and watch him go purple :winkwink: x


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## Sam9kids

gorgeous xx


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## Marleysgirl

Another Thursday, another weight update!

Checked in at 4.2kg this morning, which is 9lb 4oz. No wonder he's beginning to out-grow the "early baby" (7.5lb) clothes!

Poor babs has a bit of a snuffles though, his first cold. He's propped up at the head end of his basket, and there's a muslin with olbas-oil on it closeby, and he seems to be doing okay. It's not affecting his feeding yet, which is good :)

He's also got a mild case of cradle-cap, which looks minging :rofl:


----------



## Foogirl

Abby still has it. Nothing seems to shift it but it is better than it used to be.


----------



## bumpsmum

I always thought cradle cap only affected overdue babies as they were 'overcooked' :dohh: shows what I know lol

Andrew is doing really well hun, roll on all those fab newborn size outfits you'll no doubt be dying to put on him xx


----------



## Marleysgirl

Got clarification from the Paediatrician yesterday as to what she considers "adequate growth" for Andrew (during a protracted email conversation about supplying EBM fortifier) ...

She'd like to see him put on 180g / week !!!!!!!

He's currently putting on about 100/120g, which I thought was sufficient seeing as it keeps him on the same curve on the growth chart (just below -4SD). She'd obviously like to see him starting to climb up the curves.

Can I tie fishing weights to him under his clothes for the next weigh-in? :rofl:


----------



## Gizmo

Awwww I think too much pressure is put on these little guys to grow .... Im sure he is growing just fine at his own rate..... My SIL had a little guy at 32 weeks weighing 4 pounds now hes 1 and weighs 18 lb and they are at her for him gaining but when I look at him he looks just fine and quite chubby actually lol!

Fishing weights sound good to me ;) lol


----------



## Marleysgirl

Today was the opthalmology appointment, organised by the paediatric consultant because Andrew refused to follow her finger six weeks ago .... He passed with flying colours! He has full range of vision (no problems with field of vision), no squint, is responding to light properly and basically they can find nothing wrong. Silly consultant :rofl:

I'll get my own back on her on Friday. They'll weigh Andrew at the hospital and then tut-tut over his weight. So I'm going to take him to the local clinic on Thursday (where he's weighed regularly), just so I can prove that the hospital scales aren't calibrated correctly - he weighs under every time there!

Oh, and today we had a :happydance: :happydance: whoop-whoop moment. He didn't want to eat his puree food again, so instead I gave him some finger foods BLW-style - banana, grape & a rusk. He's never picked up food to eat himself before, but once he'd tasted the rusk, he grabbed it and held it in his mouth while he was gumming it! And the grape went down pretty well, he seemed to like the taste of that.


----------



## angelstardust

They seem to find it hard to accept that babies like to grow at a steady rate and follow a curve rather than go on a massive bulk out. I still get it and Christopher is almost 5 years old! So long as he is gaining at a steady rate and you think he's doing well, he's doing well.


----------



## Foogirl

Marleysgirl said:


> Oh, and today we had a :happydance: :happydance: whoop-whoop moment. He didn't want to eat his puree food again, so instead I gave him some finger foods BLW-style - banana, grape & a rusk. He's never picked up food to eat himself before, but once he'd tasted the rusk, he grabbed it and held it in his mouth while he was gumming it! And the grape went down pretty well, he seemed to like the taste of that.

Hurrah!:happydance:

We had our first go of sweet potato wedges. She wolfed them down!


----------



## Marleysgirl

Updates .... updates .... updates .... (picture a scrolling news ticker!)

30 weeks actual, 19 weeks corrected, and Andrew now weighs 4.5kg or 9lb 12oz. 

He is experimenting with sitting up - unable to hold himself for long, but happy to be propped against a cushion or his gorilla-pod, at least for a while. Not yet rolling over but the wriggles are beginning to turn into rolling motion from side to side, so I reckong it's not far off. 

And today we had our first interest shown in food - cauliflower cheese. Made from two cubes of cauliflower puree, some baby rice, and some finely grated (and then melted) cheddar cheese blush: mature :blush:). It went down a storm. I reckon he's a cheese-a-holic.


----------



## bumpsmum

FANTASTIC news hun......................go Andrew my laptop ups and dies on me for a few days and its all go here! Such positive news with his vision and a great weight, dont listen to the silly hospital he's growing in the right direction at a steady pace and with all, these tasty flavours he's trying he'll be a big un soon enough.

Hmmmm I reckon your gonna need to Andrew-proof your living room very soon, once he masters the rolling its an instant mode of transport xx


----------



## Marleysgirl

Long time since I've written on this thread, but I'm bumping it with news rather than starting a new thread.

Andrew started having spasmodic episodes last week. At first we thought they were colic or constipation, but they continued after he had "a good clear out". On Saturday we took him to A&E, and he was admitted onto the ward for observation. 

On Monday he had an EEG, and it's been confirmed that he has infantile spasms or "west's syndrome", which is basically baby epilepsy. It needs medication to suppress it just now, and he should grow out of it in a year or two, though it means he's also susceptible to other forms of epilepsy as he grows older. 

He's still in hospital just now, starting the strong steroid medication tonight. As you can imagine, our heads are all over the place with the news. I'm staying up at the hospital most of the day and overnight. 

I'll write more next week when (hopefully) he's discharged.


----------



## Foogirl

Marleysgirl said:


> Long time since I've written on this thread, but I'm bumping it with news rather than starting a new thread.
> 
> Andrew started having spasmodic episodes last week. At first we thought they were colic or constipation, but they continued after he had "a good clear out". On Saturday we took him to A&E, and he was admitted onto the ward for observation.
> 
> On Monday he had an EEG, and it's been confirmed that he has infantile spasms or "west's syndrome", which is basically baby epilepsy. It needs medication to suppress it just now, and he should grow out of it in a year or two, though it means he's also susceptible to other forms of epilepsy as he grows older.
> 
> He's still in hospital just now, starting the strong steroid medication tonight. As you can imagine, our heads are all over the place with the news. I'm staying up at the hospital most of the day and overnight.
> 
> I'll write more next week when (hopefully) he's discharged.

Poor you's and poor Andrew. Is this something because of him being a preemie do they know? Hopefully the meds will work quickly and he'll be home soon. I can't imagine having to deal with something like this - after all you've been through, you kind of think that's it, we're home and clear now. But I suppose as they develop, anything can come out of the woodwork.

Sending big hugs to you all.


----------



## Marleysgirl

It's not linked to his prematurity as such - they are presuming that it's been caused by the intra-uterine (pre-birth) bleed in his brain. We were told that they wouldn't be able to say whether the bleed had affected anything until he was about 2 years old (and had developed normally), and any number of problems might arise in that time. So here we are.

Main thing is that the brainwave pattern could hinder his development; and the steroid treatment could also hinder his development. Kinda catch-22. We just have to monitor that, and encourage him as much as possible.


----------



## Foogirl

Marleysgirl said:


> It's not linked to his prematurity as such - they are presuming that it's been caused by the intra-uterine (pre-birth) bleed in his brain. We were told that they wouldn't be able to say whether the bleed had affected anything until he was about 2 years old (and had developed normally), and any number of problems might arise in that time. So here we are.
> 
> Main thing is that the brainwave pattern could hinder his development; and the steroid treatment could also hinder his development. Kinda catch-22. We just have to monitor that, and encourage him as much as possible.

It's such a hard waiting game. I don't know if you've done the same, but we were told the same thing about Abby's brain cysts - we won't know more until she's a year old - and every little thing we've been "is it because of the cysts":dohh: She's not crawling or sitting well so we are waiting for her next review in a couple of weeks to see if it's an indicator of a problem or not.

I'm sure it wont help much, but I'm thinking of you and keeping everything crossed for a good outcome.:hugs:


----------



## bumpsmum

oh huni :hugs: im so sorry to read that Andrew is having these seizures, he's in safe hands and the medication will quickly control it :hugs: xx


----------



## angelstardust

*big huge 'stop the seizures' vibes for Andrew*


----------



## Foogirl

I was just thining Marley, is this possibly the reason for the bad afternoons you were having?

How is he doing now?


----------



## Marleysgirl

Yep :D It turns out that irritability is one of the symptoms of infantile spasms. Whats unfortunate is that irritability is also one of the side-effects of the medication, so things may not get better :D

We are home :happydance:

Andrew is on Prednisole steroids, together with Ranitidine to protect his tummy from the steroids. He seems to be responding well, in that he is now down to only one episode a day (first thing in the morning); that means that he's on the correct dosage, and he should be seizure-free within a week or two. He has a repeat EEG booked for 15 days after meds started, and this will show whether the hypsarrythmia in his brainwaves has lessened or stopped. If he shows improvement, then he'll be on the steroids (a lesser dose) for a couple of months.

Other side-effects are sleepiness (which might help lessen the irritability) and increased appetite, which is actually no bad thing given that we've had trouble increasing his food/milk intake enough to keep the Paed Consultant happy. Reading up (google is not your friend!) it would seem that he could also suffer development delay, though nobody at the hospital was really clear about this. I can kinda see how sleeping all day and night would hinder development, he doesn't stay awake for long to practice sitting up and rolling over! We need to make the most of his waking periods. One thing the consultants did say was that he'd be more prone to having other forms of epilepsy as he gets older. 

Fingers crossed we've licked this problem! :happydance:


----------



## Foogirl

Good news that he is better.

Google is never our friend! (Although today has pacman - insert coin!!!!):happydance:

Fingers crossed it goes better from now.


----------



## Marleysgirl

50 hours with no episode - and he smiled again this morning, first time we've seen his smile for weeks. It fair reduced me to tears.


----------



## Marleysgirl

Back into A&E this morning ..................

Not the infantile spasms though. Andrew woke me at 5am with extremely bad d&v, full stripdown of the bed, bath-time etc. He took some milk at 7am, but brought it back up an hour later. We'd been told that the slightest small thing, he had to come back to hospital (because it could be/affect the steroids), so in we went. 

As pulse, bp etc were normal, all they did was monitor him for a few hours. They reckoned he wouldn't be dehydrated yet, and so long as he wanted to feed, to keep giving him his prescription milk.

He had a feed at 11am which he kept down, so we were allowed to leave at 1pm to go and visit his daddy in the next hospital (he's recovering from an operation). Andrew fed again at 3pm, and then brought most of it back up when sat in his car seat on the way home - icky!

So he's had some dialoryte (sp?) and half a feed, and I've got him asleep on the sofa next to me so that I can keep an eye on him. So long as he keeps half feeds down (with his meds), they're happy.

Poor wee thing.


----------



## Foogirl

Poor little fellow. Is it a bug, or a side effect of the tablets?


----------



## Abigailly

I've followed for a while. Well I've kind of creeped round like a Ninja! And something just struck me! Are you a Fifer? Or have you always been from MAnc>

Hope the wee man is doing well#!


----------



## Marleysgirl

Abi - not Fife, Argyll for 13 years fore coming to Manc last Spring. Why??? Do I sound like someone you know?

Anyway

Andrew went back to A&E on Friday morning, as he still had v&d but also a high heartrate when the epilepsy nurse checked. He was admitted eventually and put on half-dose IV for 24 hours (he was still taking some milk). 

Blood & urine tests done to check whether he had an infection and whether he was ingesting the meds okay still. All clear, and I've just brought him home after a 48hr stay.


----------



## Abigailly

Marleysgirl said:


> Abi - not Fife, Argyll for 13 years fore coming to Manc last Spring. Why??? Do I sound like someone you know?

I'm from Fife and I just realised (after months of reading) you type like a Scot. So I thought I'd be nosey:blush:


----------



## Marleysgirl

Abigailly said:


> I'm from Fife and I just realised (after months of reading) you type like a Scot. So I thought I'd be nosey:blush:

LOL - I type like a Scot? That's what living up there for thirteen years did for me! I've been down here a year, but my boy is still "wee" and I still have a "piecebox" :D

Andrew still has diawoowoo, but no sicky now. He's taking all his usual milk, plus some extra when he wakes in the night.


----------



## sherryberry79

Hi, sorry to hear you are all having a hard time right now, I hope Andrew is on the mend very soon x


----------



## Marleysgirl

Blimey, haven't kept this terribly uptodate, have I :D

I was saying above that I took Andrew to A&E with severe diawoo, and they sent us home with dialoryte?

We were back in the next day, as the Epilepsy Nurse was scared about his high heartrate when she came to visit. So this time A&E admitted us, and Andrew spent 48 hours on the ward (including 24hrs on a drip). They did various tests, but concluded it was simply a gastric virus. He was discharged on the Sunday, the same day as his Daddy! His diawoo cleared up about 4 days later.

A week later (two weeks on the steroids), Andrew returned for an EEG which showed marked improvement to the hypsarrythmia that was causing his spasms. His last spasm was still the Friday morning at the end of his hospital stay, so he had been clear for almost two weeks by the EEG. Because he responded so well to the medication, the Neurologist agreed that he could be weaned off the steroids.

A few days later, Andrew returned to the hospital again (he's such a frequent visitor) for the first of the behavioural tests on his hearing. Alas he was grumpy from the steroids and teething by this point, so he was not playing ball at all. The test has been rescheduled for 4 weeks time.

We then went on holiday! One week in a caravan on the Costa del North Wales. During this time Andrew cut his first tooth and weaned off the steroids. The difference in his behaviour was amazing - he was rolling around all over the place, laughing and smiling, playing independently. And the biggest difference was that he started babbling properly, making consonant noises. We were sooooooooooooo happy :D

To bring this totally uptodate ... He has now cut a second tooth (the first upper tooth). He's had a final EEG which showed even further improvement, and has been signed off by the Neuro team, they hope that he won't return (unfortunately it's a possibility). He's booked in for an ECG because of the high heartrate picked up during all his illnesses. 

He has said goodbye to the Neuro team and the Epilepsy Nurse, but has said hello to three new people interested in his development: Pre-School Special Needs, who are monitoring his development through play; a Peripatetic Teacher for the Deaf, who will work with him all the way through pre-school and school; and a Dietician, as he is still only maintaining his growth curve and not climbing up the percentiles.

Phew! 

It's his birthday in just over 6 weeks, and we're not sure what to get as he is only now playing with toys that we got at Christmas (he's 8m actual, but about 6m development). OH is getting a rainforest soother for his cot, and I'm toying with the idea of a toddler swing for the garden, as he loves to swing and he loves the outdoors. Any other ideas?


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## Marleysgirl

Time for a new photo, I think!

https://i306.photobucket.com/albums/nn274/Tigsteroonie/28275_1547470769399_1313941020_1471.jpg


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## Jemma_x

Hes gorgeous, im so glad hes been signed off by the neuro team thats great news x


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## Foogirl

He's growing into such a handsome wee man! And seems to be getting on so well too. You must be relieved to get to something approaching "normal"

Do you have a jumperoo? If not, that might make a great pressie. Abby also loves her books so we tend to go for those. The only other toy she likes is a drum that came from Tesco. It is brilliant!

But we were the same with the brithday, no idea what to do so we got her some vests and sleepsuits as she was growing out of the ones she had. To be honest, I could have wrapped up rocks and she would have had a whale of a time, she just loves ripping paper!


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## Marleysgirl

I know what you mean about the paper - Andrew's favourite toy just now is a foil emergency blanket, it's shiny and makes a great noise!


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## Marleysgirl

Just a wee bump .....

Apparently the documentary has been renamed "Cherry Has a Baby" and will be shown on BBC3 in early September. I'll bump again when I get confirmation of the exact date, plus there may be some advance publicity that we get featured in.


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## Marleysgirl

We've been for another attempt at Andrew's hearing test. He still didn't respond to any sound stimulus, and the audiologist is afraid that he may have severe deafness. We're not convinced, he can definitely hear some sounds when in the home, he's just being bolshie when it comes to the test situation!

To play on the safe side, he is being fitted with hearing aids, set at a conservative level. He gets them one week before his birthday. Feel a bit weepy at the prospect, it's like admitting that our baby is challenged, there's going to be a visual reminder.


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## Foogirl

:hugs:

It must be awful to have to cope with one thing after another and another. I really do feel for you.

But remember that our little miracles seem to constantly amaze us with their progress. If you've noticed he's hearing things at home, the chances are you are absolutely right.

And if he does need the hearing aids, then you'll no doubt cope with it as well as you have with everything else. He's here, he's happy, he's doing great. Of course we all want things to be perfect for them, but whatever his problems are, they will be what make him, him. I'll bet he will make you proud every day.

:hugs:


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## Marleysgirl

I got a job!!!!!

Time to return to the world of work, just as Andrew hits his first birthday! I'm going back full-time with my OH becoming a SAHD. But I suspect we'll be trying for no.2 once the maternity benefits kick in .... 

One of my clinic midwives said that once everything was sorted health-wise with Andrew, only then would I get a job, because only then would the timing be right. So I hope this means the end of all the troubles :flower:


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## Foogirl

Marleysgirl said:


> I got a job!!!!!
> 
> Time to return to the world of work, just as Andrew hits his first birthday! I'm going back full-time with my OH becoming a SAHD. But I suspect we'll be trying for no.2 once the maternity benefits kick in ....
> 
> One of my clinic midwives said that once everything was sorted health-wise with Andrew, only then would I get a job, because only then would the timing be right. So I hope this means the end of all the troubles :flower:

Congratulations!

What you going to be doing?


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## Marleysgirl

It's nerdy, back-room database work. The inner geek coming out!


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## Agiboma

congrats on your new job


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## Marleysgirl

Bump!

I haven't started my new job yet (still negotiating a start date) so it looks like I'll be at home for Andrew's birthday next week :) I'm taking him to the HV for weighing this week (in case my job starts), so that I have a weight figure for his first birthday!

Andrew is not sitting unaided yet, though he has the strength in his stomach muscles to pull himself upright when lying back in my arms. When on the floor, he wants to wriggle too much and use his hands for things, so he's not still enough to use his arms to prop himself, and he topples sideways!

Movement wise though, we have progress. From rolling over and over (and over and over and over), he now rolls onto his front and raises himself on arms & knees, into a crawl position. He hasn't yet worked out how to get forward momentum, and gets very frustrated about it :D


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## AP

Oooooh he's doing really well then honey!!! He sounds on target!

I was reading about your hearing test - Alex couldnt have the whole test as she was too wiggily, but she only has to hear the Direct Line advert come on, or the Nikon camera advert(she thinks Hollyoaks is about to come on after it :rofl:) and she immediatly looks at the TV, so I wasnt too worried.


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## Marleysgirl

Don't take the question wrongly, but do you put Alex in front of the television to watch anything? I'm not being judgemental or anything! It's just with you saying that she loves the noise of particular adverts. 

The tv is on most of the time in our lounge, but Andrew shows no real response to it. His main play area is at the other end of the room and he can't really see the screen because of the coffee table etc. We've only put him into his bouncer in front of the television three or four times, but I'm wondering if we should do so more.


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## AP

We tend to let alex roam the living room and do her own thing
Since Alex came home I have always had music channels on - she will not pay attention to anything she doesnt recognise really, and will mind her own business. Shes not a big TV watcher tbh, but its always on. However she recognises popular tunes, and the repetitive adverts.
This is what happens when the Direct Line phones make their wee tune
https://sphotos.ak.fbcdn.net/hphotos-ak-snc3/hs201.snc3/20835_407645679317_514829317_4209116_7590165_n.jpg
Theres even been a thread about that advert on Baby club - babies love it -watch andrews reaction in case he loves it too.

We found she will never really sit unaided unless she has something to concentrate on - mainly, Gaga. I kid you not. Its surreal. This pic made me so proud. Albeit peeved that Lady Gaga can get Alex to do something I cant get her to do.....
https://sphotos.ak.fbcdn.net/hphotos-ak-snc4/hs216.snc4/39147_415596354317_514829317_4398562_1871617_n.jpg


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## Marleysgirl

:rofl: Lovely photos :rofl:

Perhaps when Andrew achieves forward movement, he'll crawl beneath the coffee table and emerge by the television, where it will engross him for a few minutes .... Or maybe I should move the coffee table ;)


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## AP

I mean, it wasnt something I wanted to encourage, but shes shown us she can take interest and concentrate on something, without realising shes practising sitting up


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## Marleysgirl

Andrew weighed in at 14lb this morning, that's a 900-odd %age increase on his birthweight. From less than a bag of sugar to over six bags of sugar. 

And he is now sporting some lovely dark blue hearing aids. They've been set at 75dB initially, though we can increase that setting. He is definitely hearing more, he turns his head to somebody talking now, so they're obviously having a good effect. Physically the aids aren't bothering him either, which was a worry.


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## Foogirl

Like Sandi, I didn't want Abby to be encouraged to watch TV avidly and I rarely had it on in the house. I tended to have the radio on. But when Daddy came home the TV went on, and at weekends - then he did a month at home with her and she now is definitely a watcher. I do use it when I need to leave the room for ten minutes, as it is definitely a distraction for her and she is going through a clingy phase so distraction is good. She does play happily with it on in the background though. And despite what the experts say about it stopping them learning to talk, she is far advanced of where she should be with that, and in fact, will sit and repeat practically every second word spoken.

The reason I haven't discouraged it, is we are having trouble with Abby's movement. She won't sit unaided without her hands on her lap holding herself up, or in her play ring. She won't roll over or even twist about on her back or lie on her side. Unless we have her in a position where she has to twist to see the TV. And as with Alex, when she isn't paying attention to the fact she is sitting up, she does sit nice and straight and the TV has proven the best distraction for that.

The other thing is, we watch together, and sing the songs and I talk to her about the things on the screen.

I think it is just like everything else, if it works for them, do what you need to. Of course leaving a child (especially the older ones) in front of a telly for hours on end is going to be counter productive but in moderation I can't see a problem with it.

I'm not a fan of CeeBeebies as I can't see much educational value in it for babies of Abby's age, but I do like Baby TV (Sky 623). Bizarrely it is a very low budget channel with what appear to be primarily eastern european or middle eastern programmes translated into English, but I find that the spoken english is very clear and Abby can pick up the words and repeat them with few problems. There tend not to be so many "in the night garden" or "tellytubbies" type programmes, where the characters don't speak real words so I don't know if that makes the difference.


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## Marleysgirl

A photo from Birthday morning!

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/P1030375.jpg

I can't believe we've come so far, I can't believe that a year ago we nearly lost him and now he's trying to crawl across the floor. I've got tears in my eyes.


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## AP

Happy birthday Andrew(I didnt know we shared the same birthday, I was a 29 weeker 24 years ago today!)


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## Foogirl

Oh, I'm welling up now too!

Happy birthday Andrew.
xxx

(and to Sandi too)


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## KiansMummy

Congrats and welcome to the world Andrew xx


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## Marleysgirl

Did anybody else's baby suddenly go "long"? :rofl: All of a sudden, Andrew seems to be losing his baby podginess and turning into a long lanky baby. Don't know where he gets it from, both parents are short-ar*es :rofl:

I've just finished my first week at work. I was a bit worried about how the SAHD would cope given that I've done almost all (and I mean all bar one or two) nappy changes and feeds since I stopped expressing back in the spring. But, to be honest, he's coped pretty well. Feeding Andrew his solids seems to be a messy exercise but at least he's getting food in, and if anything his appetite has increased so perhaps Daddy is more patient and happy to hang around longer spooning food in. Nappywise, there's a bit of rash (prob not changing him quick enough) but nothing that nightly slatherings of cream won't help.

Andrew is now spending time in front of the television, it would seem (lazy Daddy!), mainly in his bouncer so that he can fall asleep there. He has shown definite response to some programmes but annoyingly OH didn't note which progs they were.

Neither of them seem too traumatized by me being out working, SAHD is noticeably more tired in the evenings so perhaps he's realising just how much I used to do in terms of running around after Andrew :D


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## Marleysgirl

Well, we are now five weeks into the idea of working Mum / SAHD, and things are going well. Andrew continues to feed happily on his EK St2 meals, and Dad is now getting quite proud of the amount Andrew eats. They haven't really braved going out of the house unless they have to - for hospital appointments etc - so no wanders to the local shop or anything. 

Andrew is crawling - not quite properly yet, more just a very fast commando crawl. He can make it across the lounge into the kitchen very quickly, so we will have to put the safety gate in place this weekend as I suspect he'll perfect a proper crawl with no warning and then he'll be off to the kitchen, face in the bowl of cat food, or even out of the back door!

We've given up with the hearing aids for the moment, they really did not seem to make any difference to his behaviour / attentiveness, and it annoyed him having them constantly put back when he pulled them out (I did not want to go down the road of making him wear a bonnet). The audiologist was in agreement that we can wait, so he has an appointment at the start of December to see if he responds to the behavioural tests any better. Even if he doesn't, I'm hoping SAHD will be so settled into his role by then that he is happy to keep re-inserting the aids as necessary.

Andrew was seen by the hospital Dietitian for the first time this week (I didn't go, SAHD went). Initially his height was measured wrong by a nurse and they said he was hugely underweight, but the Dietitian insisted he was re-measured and he is in proportion height/weight wise. She said that she had seen a good number of premmies who suffer from the gag>vomit reflex, and that she thinks their palates might be hypersensitive from being tube-fed, so my theory was correct. She is happy for us to continue on St2 meals progressing to St3, and she has suggested we try Andrew on Quavers & Wotsits as they melt in the mouth! Andrew had Wotsits for the first time yesterday (luckily he loves cheese), and did just fine, but he's still not really into eating things from his own hands, he prefers the spoon. 

The Dietitian has given us a supplement to add to his milk - supersoluble Duocal - so now he is on super-high-calorie milk with added calories :rofl:


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## sherryberry79

We are having big problems with lumps too, I hav been pretty relaxed about it until recently, but now it's starting to get me down. I am waiting for an appointment with her consultant, but I hold little hope for a magic solution to this problem. As you say, I am pretty sure that Amelia's oral hyper-sensitivity is a result of all the feeding/vent tubes. I have been warned that this will have a knock on effect with her speech too, it's wonderful but stressful and frustrating being a preemie mummy ](*,)

We spent the day st Stepping Hill today too, Millie has a viral infection on her chest, she has been having nebulisers, inhalers and steroids, but thay have finally let us bring her home. Just got to try to get the inhalers and steroids into her now, at least she has not needed to go back on oxygen, hopefully it will stay that way.

Sounds like SAHD is doing a fine job, how are you finding being back in the world of work? Quite nice to be in an adult environment again I would imagine!

It sounds like Andrew is doing great, I think my little rascal needs that supplement for her milk too, as her weight is not really where it should be (but then it never really has been)!


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## clairec81

Hi Marleysgirl and Sherryberry, my LO is also a slow gainer and is currently 12lb at 9 months (7 and a bit corrected) She has been on high cal milk (infatrini) since about 2 months and a supplement (Calogen) for a while too. What is Andrew's 'super' high cal milk? just wondering where the dietician will go next with Erin! She too has a sensitive gag reflex and can handle some things but others are an immediate vomit. We tried wotsits a while ago and she loves them. I have moved on to trying mini rusks and she is doing surprisingly well - however a home made custard with very small, soft pear (which had been cooked and crushed down) provoked a huge vomit the other day = go figure eh!


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## Marleysgirl

Andrew's "super high calorie" milk is Infatrini, I use that term to distinguish it from the "high calorie" milk NutriPrem2 :D 

Sherry, I'm sorry to hear that Millie went back in, but I'm glad they didn't put her back on the O2. What steroids did they give you? Andrew was on prednisolone for his fits, I just dissolved them in a drop of water and syringed it into his mouth before milk feeds. 

The lump/vomit issue did get me down during the summer, I felt a little better when I switched Andrew onto Ella's Kitchen St2 pouches and he loves them (he also loves Plum pouches), as at least I know he's eating something. I felt much better this week when the dietitian said that she's seen it before, so it's quite common.

One thing OH hadn't told me until last night, the dietitian suggests that we give Andrew wotsits and rusks etc (finger food) about an hour after a milk feed. She says if he vomits then, not to worry too much (other than the icky clearing up) as he will have already absorbed a fair portion of the nutrients from the milk.

I've found that going back to work has re-stimulated my brain, so I no longer suffer from baby-brain :rofl:


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## sleeping bubs

Hey Marleysgirl Andrew seems to be doing really well on his milk!! Andrew and Mckenzie seem to be around the same size he now weighs 15lb 7oz such a slow progress!! I refused to c dietition as Mckenzie does eat lumps and finger foods but not a lot and even less at moment as he has a cold and teething. Well we have been discaharged from hospital twice so far as aart from his slow weight gain developmentally he ok as he is now walking/running and signing!! Mckenzie loves wootists and mini rusks not too keen on the big rusks so must buy some again. I am trying at moment to give normal food but such a nightmare!!! 

Good idea to go back to work but I am not intending yet as trying for another lo and hopefully going to try and finish my degree though OU so hopefully get my brain back again!!


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## AP

Keep up the work Marleysgirl. I was in disbelief when Alex started taking lumps. It was literally a case of waking up and doing it.

Two things I think that helped
- the HV suggested an inbetween stage by putting baby pasta stars in the jars to thicken them up. Alex didnt choke these up and that went fine.
- Coming home from THAT sh***y neonatal appointment, we sat her down one night and gave her pasta alphabetti spagetti (out a tin) and the sausages out of heinz beans and sausages. Not the most healthiest but we were desperate!

The pasta went down well and we let her bite into it with her teeth first before taking anything in her mouth. then she picked it up herself.

The sausage was given to her and she held it in her hand and took a shy bite and started chewing. I was stunned! Im guessing the sausage had that texture that she just HAD to start chewing?

Potato waffles soaked in the sauce from the spagetti worked very very well too. I think letting her have control helped (as long as she didnt get too greedy and started ramming it all in!)

From that day on we did similar foods at dinner and then brought it into lunch too. 
I found her with my slice of bread one day, she nicked it when i wasnt concentrating and started eating that - and didnt gag! So she gets soft toast in the morning now too.

After that we dared to use a stage 2 jar - perfection. :shock:

I thought I would let you know whats worked for us. The week before - she would have NEVER managed it, so it really was like a flick of a switch. 

It was very worrying when Alex wouldnt take lumps, but at the same time I had huge support and knowledge from here and my preemie friends IRL. It'll work out hun! They will get there, wherever 'there' is, its not a race :)

I didnt realise infantrini was an extra high cal milk. Its one thing no bugger offered us and now all the low and slow weight gain preemies weigh tons more than alex :rofl: she is the skinniest and smallest of the group now!

My other preemie friends dietrician says that it can take some preemies til they are 2/3. So we all have hope ;)

Off to crave wotsits now :rofl:


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## Marleysgirl

Thanks for the suggestions, sb :D

Andrew is still not picking up food himself, still not associating what we put in his hand with food that goes into his mouth. But he did eat some of a jar of Heinz Stage2 today (chicken with noodles), it had visible lumps of pasta (noodles? lol) in it and he seemed to move them around his mouth and swallow them down just fine, no gagging. So we've bought some more jars of Stage 2, see how he goes with them.

Is Alex still on milk, and how does she take it? Andrew is still using bottles & teats (which he can now hold himself), I'm wondering whether it's heading towards time to move him onto sippycups.


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## AP

Now theres a question! Nope, im afraid alex is on bottles and teats too. we have cut slits into the teats so its more free flowing but any sippy cup is either too hard to get anything out of for her or too fast that she chokes. :/ cant win there, but on the whole im not too worried about that, as long as the milks going down.

Alex has loads of milk though - we give her cows milk now, she can have up to 20oz a day still and that on top of 3 meals, and a slice of buttered toast and a snack. Im not complaining - we weighed her today and was stunned to find the hospital had made a mistake in converting and shes more 19lb than 17lb!!! :shock: First time in her life shes had an appetite!

Honestly shes like a flippin piranna fish just now, ive had my toe bitten off today, she will attempt anything :rofl:


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## Marleysgirl

Awww, I'm pleased she has an appetite - not sure about eating toes though :rofl:

Have to say I'm inclined to agree about the milk - it's getting milk into Andrew that's important, not how he manages it.


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## AP

It bloody hurt anyway!!! :rofl: or she bites my knee!!!!

Dont worry about the bottles. I spoke to the HV as she wasnt too worried. AT end of the day, shes gonna grow out of it some point


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## Marleysgirl

A little update ......

When crawling, Andrew is now beginning to extend his legs and raise his bum in the air, so he's beginning to put weight onto his whole leg rather than just his knees - turning himself into a triangle iyswim :D

He's still not sitting for any length of time, but he can sit. He will sit for three seconds or so, but then gets distracted and rolls over to crawl off. He sat yesterday in a washing basket, proving that he can do it. I need to find something on telly that he finds interesting - failed with F1 this morning, children's programmes hold no interest, I think it's time to hit VH1 :D

And finally a breakthrough on the feeding - today (first time) he has held half-a-rusk and started nibbling on the edge of it. I don't know if he realises that it's food, or whether he's just mouthing & biting thinking it's a toy, but he's quite keen so it might be that the sweetness of the rusk is reaching his tastebuds. I just need to get him practising this every day now.


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## sleeping bubs

ahh bless him Good old rusks think Mckenzie gets bored with them has a bit then throws it well most food at min and having a non-eating week yet again lol.

As with tv programs Mckenzie does love Zingzilliers, in the night garden and boogie beebies it holds his attention for a while but never sits still!! 

How much does Andrew weigh now? Mckenzie is still 15lb 7oz!! Hoping to see a dietition soon


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## Foogirl

Marleysgirl said:


> A little update ......
> 
> When crawling, Andrew is now beginning to extend his legs and raise his bum in the air, so he's beginning to put weight onto his whole leg rather than just his knees - turning himself into a triangle iyswim :D
> 
> He's still not sitting for any length of time, but he can sit. He will sit for three seconds or so, but then gets distracted and rolls over to crawl off. He sat yesterday in a washing basket, proving that he can do it. I need to find something on telly that he finds interesting - failed with F1 this morning, children's programmes hold no interest, I think it's time to hit VH1 :D
> 
> And finally a breakthrough on the feeding - today (first time) he has held half-a-rusk and started nibbling on the edge of it. I don't know if he realises that it's food, or whether he's just mouthing & biting thinking it's a toy, but he's quite keen so it might be that the sweetness of the rusk is reaching his tastebuds. I just need to get him practising this every day now.

Well done Andrew.:happydance:


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## Marleysgirl

We'll have a weight update next week when he returns to the dietitian.

Can't remember (and am too lazy to read back!) whether I mentioned that the dietitian put Andrew onto Duocal supplement powder in his milk? Since then, he's had loose poop all the time, and it's giving him a really sore bottom - the only other time he's ever had nappy rash was when he had diawoo. So after two weeks of this, I'm taking him back off the powder, I shall give it a week to see if his bowels & bottom improve. The supplement is the only thing that has changed in his routine, it must be that. Poor babba, such a sore bottom, even metanium doesn't help :(


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## AP

Marleysgirl said:


> He's still not sitting for any length of time, but he can sit. He will sit for three seconds or so, but then gets distracted and rolls over to crawl off. He sat yesterday in a washing basket, proving that he can do it. I need to find something on telly that he finds interesting - failed with F1 this morning, children's programmes hold no interest, I think it's time to hit VH1 :D

:happydance: How similar can alex and andrew be :rofl:


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## Lottie86

Yay glad to hear Andrew is doing well. Awww that sounds so cute that he just crawls off :D




sb22 said:


> I didnt realise infantrini was an extra high cal milk. Its one thing no bugger offered us and now all the low and slow weight gain preemies weigh tons more than alex :rofl: she is the skinniest and smallest of the group now!

Don't worry, Alex weighs tons more than F does and he is a lot older than her and has over 1000 calories a day and he weighed in at 12lb 10oz at a couple of weeks ago :wacko:


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## AP

awww findlay ya cutie! OT but i seen his pics today: oh my god how cute!

im afraid alex has gone from 'im not eating' to 'mums toes are even edible'. Not complaining but im not edible like!


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## sleeping bubs

Hey Mckenzie has a really sore bum at moment has a day when does nothing then next day he can go up to 6 times a day such a nightmare!! I am wondering what dietition will do as he is such hit and miss with eating for tea he had about one little square cheese spead sandwich and half an avcardo and thats it. Lunch time he had almost 1/2 jar of stage 3 food and thats it!! Hoping he/she will help! Need to get something in him as he doesn't stay still trying to run but looks like he is drunk!!!


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## Marleysgirl

A year ago (Bonfire Night 2009) was when we brought Andrew home from hospital :happydance: This year has gone sooooo fast. 

We've had two visits from the Pre-School Special Needs Advisor, at the last visit she managed to get him to sit up for a few seconds (must have distracted him) so she is convinced now that he can sit, he just doesn't want to, crawling is more fun and he's got used to playing with toys while lying down so it's habit. We have to keep encouraging him to sit whenever possible, still searching for that elusive television programme to keep him occupied! (VH1 didn't work) She also brought him a piano/xylophone that *doesn't* light up, and he happily plays with that, confirming that he does have some hearing.

Dietitian visit next week. His nappy rash has cleared up :happydance: I am so looking forward to telling her that we've stopped giving him the supplement, and why. How can it be good to give a baby something that makes his bottom raw? What is it doing to his innards?

I think we may have to progress from 3-6m up to 6-9m clothing soon, his babygros are getting a little short for his legs! And he definitely prefers the extra legroom of the 6m+ sleeping bags. 

No further forward with lumpy food, but he has increased his intake to include a savoury course, pudding AND a yoghurt.


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## sleeping bubs

thats good news about the food intake and bum issue lol Good plan with the non light up toys and that Andrew has some hearing.
Isn't it really good when they go up a size in clothes lol Mckenzie is now in 6-9m vests and tops but still in 3-6m trousers!

We are still waiting for dietition appointment, getting him weighed on monday


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## Marleysgirl

Andrew weighed in at 7.01kg and measured 70.1cm today :happydance:

He's creeping up on the height graph, but still plugging his own curve on the weight graph - so he's now a little underweight for his height.

Dietitian has given us another supplement to try (pure carbohydrate as opposed to carb/fat mix); she also wants us to start adding cream to his food to increase calories. Personally I favour the "jaffa cake" method of extra calories, even though it's mucky! First thing he's really grabbed and eaten by himself.

And he can sit :happydance: Just doesn't want to :rofl: He's manouvred himself from crawling to sitting a couple of times now.


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## sleeping bubs

wow well done Andrew thats cool he is sitting and moving around. Let me know about supplement as Mckenzie has a diertitian appointment 3rd Dec (the first one) so hopefully they will be able to help. 

I got Mckenzie weighed on Monday now 7.16kg (15lb 12oz) and around 70cm ish I think!!


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## Marleysgirl

Well, we've cracked sitting. He now quite happily moves between sitting, lying & crawling. It's quite wonderful to see him choose to sit to play with a toy :)

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/P1030585.jpg

But not only that, he's moving rapidly onto standing up!

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/P1030582.jpg


----------



## 25weeker

Yeah well done Andrew :happydance:


----------



## AP

Yey!!! Its all coming together now!!!!!


----------



## Lottie86

Well done Andrew! :thumbup:


----------



## sleeping bubs

wow he is so cute and well done little Andrew he will be walking around in no time


----------



## Marleysgirl

Update for this week ....

The audiology appointment went well. He still didn't want to look at their stupid poxy puppets (!) in response to sounds, so they decided to try and monitor his facial expressions instead - smiles, head turning as if looking for the source, eyebrows raising, even to the point of squawking when sounds were too loud.

The good news is that he does have some hearing in his left ear :happydance: The loss is greater than in his right, but he's not profoundly deaf, and it means that - with correction - he'll have a sense of where sound is coming from (because that relies on both ears hearing slightly differently).

Because he didn't perform well with the puppets, they want to repeat the testing to make sure they didn't interpret smiles at the toys, or even wind (!), wrongly as reaction to sound. They took fresh ear moulds and, when we return in January for tests, they'll programme the next set of hearing aids to match his responses. Then he'll go home with aids again.

Now that his development is improving (sitting, playing), it will be interesting to see whether the aids change his behaviour - will he become more aware of us, and of the television? 

His daddy shouted across the room to him earlier today (in fun, not in anger) and Andrew was turning his head and laughing in response. So it would seem that he is *now* responding to sounds :happydance:


----------



## Foogirl

Oh My Lord!! What a handsome wee man he is growing up to be!

I'm so glad to hear he is doing brilliantly. :happydance::hugs:


----------



## rachelrhin0

Your Andrew came much like my Carly. She had severe IUGR only weighing 13oz (380grams) at 28 weeks. Her story is here https://carlynicoleelliotte.blogspot.com

Your Andrew is such a blessing!


----------



## Marleysgirl

Paediatrician appointment this morning!

Andrew doesn't seem to have put on any height (70.1cm) but has put on weight (7.32kg), on the graph that shows him having continued his steady gain of around 100g/4wks, so he's maintaining along the -3SD curve now. From what the Paed said, I get the feeling she's stopped being concerned about this now and is happy to accept that he is growing but not climbing the percentiles. He *is* putting on as much weight per month as an average child, it's just that his starting point was so small!! 

We can stop the Folic Acid & Sytron, she suggest we keep him on the Abidec multivitamins until he's around 5 years old - apparently that's the latest DoH guidelines! Don't our kids get enough natural vitamins these days??? And she's happy to follow the Dietitian's recommendation that he stay on Infatrini milk for as long as he'll take it.

She's impressed by the speed at which he's picked up sitting, raised crawling, and furniture cruising - all within the last 2 months or so. He's beginning to catch up on the development stakes :)

There was no mention of any testing to find out why he's small, so no genetic testing or anything, she's happy that he's doing okay :happydance:

Back to the hospital this afternoon though - time for the hearing aids!!!


----------



## sleeping bubs

good job Andrew  Hopefully the hearing aids are more successful this time for you Mckenzie weighs a bit less than Andrew now last weigh in was friday and he was 7.26kg. 

We haven't been given vitamins for Mckenzie do you think I should mention it to doc on Tuesday, yet again another weight review. But he wasn't well over Christmas he was in hospital for infection induced wheeze but picked up a bit now so he lost a bit of weight.


----------



## Marleysgirl

Isn't that odd? Andrew was on Folic Acid, Sytron, & Vitamins from the moment he started taking milk orally - they turn the milk a really weird colour! Once he came home, the hospital faxed the GP to get them prescribed and it's been a repeat prescription ever since - the multivitamins are Abidec, which retail around £3, but of course we get them for free. I asked the Paediatrician today about their continued use and she said to drop everything except the multivitamins which the Dept of Health apparently recommend for children up to the age of five. 

I suggest you ask, it can't hurt (nothing ventured and all that).

Andrew was teething early in December, and then had a bad cold over Christmas (when we all had flu), so was off solids for probably 3 weeks in total. However, he totally pigged out on the milk instead so that'll be why his weight gain continued at its usual rate!


----------



## Foogirl

Well done Andrew. He's fairly coming on isn't he!

I understood that the Sytron was only necessary for 6 months. After that, they should be capable of storing and processing iron - assuming they get it in their diets.

I get annoyed about the widespread, blanket use of vitamins. They told us in NNICU the reason they do it, especially for breastfed babies because they want to reach the lowest common denominator - those who don't have a good balanced diet, nor who give the same to their children. I was quite capable of making sure whatever went into me, gave Abby what she needed. If your are using a formula, they are usually fortified aren't they? It just seems like a waste of NHS money:dohh:

I can understand in Andrew's case, if he isn't eating properly, vitamins would be a good idea. But they do hand them out like sweeties.


----------



## Marleysgirl

You're only saying what I'm thinking, Foogirl!

What the Paediatrician actually said was that the DoH recommends multi-vitamins for all children up to the age of five because "they aren't getting enough vitamins these days, certainly not Vitamin D, children aren't outdoors long enough for that". 

At which point, I gave her the raised eyebrow look, and commented that my OH was looking forward to the summer because he has plans for Andrew to spend heaps of time in the garden, we're even getting an outdoor swing. We chose this house (to rent) because of the garden. 

Isn't it sad that (a) some children aren't given balanced diets (including daylight periods) and that (b) so many parents can't be trusted to do things right that they have to make blanket recommendations such as these.


----------



## Foogirl

Marleysgirl said:


> You're only saying what I'm thinking, Foogirl!
> 
> What the Paediatrician actually said was that the DoH recommends multi-vitamins for all children up to the age of five because "they aren't getting enough vitamins these days, certainly not Vitamin D, children aren't outdoors long enough for that".
> 
> At which point, I gave her the raised eyebrow look, and commented that my OH was looking forward to the summer because he has plans for Andrew to spend heaps of time in the garden, we're even getting an outdoor swing. We chose this house (to rent) because of the garden.
> 
> Isn't it sad that (a) some children aren't given balanced diets (including daylight periods) and that (b) so many parents can't be trusted to do things right that they have to make blanket recommendations such as these.

Hmm, does she know a child only needs 10 minutes outside in daylight to get what they need in terms of daily Vitamin D. Abby does that just going to and from the car!!

You are so right, it is a shame. But when we see the levels of obesity followed by parents saying "she's bound to be overweight, all the women in our family are, it must be genetic." Or, all the women in your family have learned poor eating habits and are passing them on to her?

I remember one mother saying she only ever cooked healthy food, so didn't know why her son was overweight. Then there is the woman who passed fish and chips through the gates of the school where Jamie Oliver's new meal plans were being implemented with the words "they only have that healthy rubbish on sale in the canteen" We should weep for the future.

And the NHS's response is to feed vitamins to babies and children, across the board. How about spending more on education for parents who have no idea how to feed their children?

Worse than the fact they give it out, we got a 500ml bottle for Abby to get 2x 1ml a day which we had to throw out after being opened for 3 months. (For those not quick on general arithmetic, that is 150ml) That's 350ml wasted.:dohh:


----------



## Marleysgirl

Am I bad - I never came back and updated this thread after his second appointment!

Andrew is sporting snazzy new blue hearing aids. They're set slightly quieter than previously. Initially I'd have said it hasn't changed his behaviour, but now I think it may be - he's far more interested in the television, and plays with noisy toys constantly. He has to wear a bonnet just now so that he doesn't pull them out, apparently it takes a couple of months for him to get used to the sensation. 

The peripatetic teacher of the deaf (what a mouthful!) came today, and she's happy with his progress. More importantly, she says his speech is just delayed and not affected by his deafness (ie he doesn't have that "deaf tonelessness" to his cries). She think his speech will develop normally. :happydance:

Andrew's twice been to soft play centres, and loves them - he can throw himself around the floor, and on/off foam blocks, to his heart's content - he's such a monkey!


----------



## sleeping bubs

ahh bless him  Thats good about his speech 

It seems all the little ones are monkeys lol


----------



## sherryberry79

That sounds so positive, way to go Andrew! Absolutely fantastic news........might drive you mad playing with noisy toys all day, but under the circumstances it must be an absolute joy for you to see....and hear!


----------



## 24/7

So lovely to read that Andrew is doing so well. :D

We are still holding onto our little boy inside, and have our next scan on 17th Feb to see how things are with the notch, but everytime I read this it gives me so much hope, you are all doing brilliantly. xxxx


----------



## Marleysgirl

Such sad news today that Amanda Holden has lost her baby at 7 months after feeling reduced movement. Another angel in heaven.

It makes me realise just how lucky we were to be so closely monitored through my pregnancy, lucky that they managed to give me the steroid jabs when things went downhill, lucky that our little boy survived his early entry into the world.


----------



## Fiestagal

It is so sad isn't it? I can't fault the monitoring we had throughout the pregnancy and I do realise it could have so easily gone wrong x


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## Marleysgirl

*STEPS!!!*

Albeit only two of them. I didn't witness them, but he did manage two unaided steps earlier today when the Pre-Schools lady was here :D She thinks it'll only be a week or two before he's walking often.


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## clairec81

That is great news - well done Andrew:thumbup:... and look out mummy here he goes!!!:haha:


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## 24/7

Well done Andrew!! :D xx


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## sleeping bubs

wow well done Andrew


----------



## 25weeker

Well done Andrew :happydance:


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## sherryberry79

Wooooohoooo Andrew, well done!!


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## pink.crazy

That's fab!! Well done ANdrew!!!


----------



## Foogirl

Clever boy!!! You must be so happy!


----------



## Lottie86

Well done Andrew!! :happydance::happydance:


----------



## PrincessPea

Yay!!! Go Andrew!!! :happydance::happydance:


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## MissMuffet08

Congratulations! That is excellent news!


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## sept10

Didn't want to read and run...i work with premature babies and its great to read your story and get the parents perspective. Well done to you and andrew x


----------



## Jemma_x

Well done Andrew


----------



## Marleysgirl

Flippin' Teacher of the Deaf.

Her latest pearl of wisdom (yesterday) was that we should encourage Andrew to vocalise by withholding things, rather than anticipating his needs. So if he doesn't shout for food or milk, we should wait until he does.

Like to see what the dietitian and paediatrician have to say about that - they want us to cram in as many calories as possible during the day. 

I can see her point though. He never has to ask for anything (apart from holding up his arms for a cuddle), everything else is either on hand or given out as part of the daily routine.


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## Marleysgirl

Five Steps!!!!


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## 24/7

Well done Andrew!! :D xx


----------



## AP

Can't tell you how happy I am for you! :)


----------



## Dona

Well done Andrew xx


----------



## pink.crazy

That;s fab!!! Well done ANdrew!!!


----------



## Marleysgirl

Bumped for Maevesmummy :kiss:


----------



## MaevesMummy

Marleysgirl said:


> Bumped for Maevesmummy :kiss:

:thumbup:
thank you so much, what a little hero. 

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx:hugs::hugs::hugs::hugs:


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## Marleysgirl

Another month goes by, time for another update!

Andrew is walking more often than crawling, so we class that as "walking" :D He's not quite at the point of sticking reins on him and letting him walk round the supermarket, but he's getting there. It does mean that everything in the house is now more accessible, so we've had to tidy the livingroom substantially.

His eating is improving too, in that he can cope with stage 2 and sometimes even stage 3 lumpy jars. He does however still have an issue with flavours, he didn't think much of pasta at the weekend and is still fixated on chicken to the exclusion of other meats & fish. No progress on finger foods or hand feeding. The weather has warmed up and we cannot get him to increase his fluid intake, we have tried every cup on the market to no avail; and if his bottle doesn't contain milk, he doesn't want to know. 

Today we were back at the hospital for him to have MRI & CT scans on his ears, to assess whether there is any physical dysfunction. The scans almost didn't happen, he fought the sedation with every breath of his body - had to have oral and anal sedation - we were almost at the point of giving up when he finally slept. Presumably we find out the "results" in a few weeks. 

He's still a happy little boy :D


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## Foogirl

Sounds like he is coming on a treat. Well done to you all. 

And I can't believe this thread has had over 40,O00 views. What a wee celebrity Andrew is:happydance:


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## inperfected

Thanks so much for this thread. My wee man in tummy is 28 weeks today an currently dilated fully so just waiting now but probably within next few days or at beat 2 weeks approx max they think.


----------



## AuntBug

inperfected said:


> Thanks so much for this thread. My wee man in tummy is 28 weeks today an currently dilated fully so just waiting now but probably within next few days or at beat 2 weeks approx max they think.

Good luck inperfected, keep us updated. My LO is 30 +4 and it's a waiting game to see how much longer we can get.


----------



## Marleysgirl

We attended Andrew's "Child Development Team" meeting today with his paediatrician, health visitor, teacher of the deaf, and special needs assistant.

Not really sure what the purpose of the meeting was, got the impression it was more of a box-ticking exercise now that he's approaching 2 years old. We didn't have any questions for any of them as we're on good terms and see them all regularly anyway.

They did say that decisions as regards to Andrew's schooling wouldn't be reached until about another year hence, when they have a better understanding of his hearing loss (ie whether special school is necessary) and development delay; so we are to plan now for him entering nursery after his 3rd birthday even though his development (& size) will be more like that of a 2-year-old. I suppose the theory is that it's better to have him on the list now rather than later.

They also said something about writing a "3.3.2" document about him, I've only just remembered this so I'm off to Google!


----------



## sherryberry79

It must be nice though to know what the plan for the future is, and that everyone else is in on the picture too! I wish there was a multi agency meeting for Millie.......I don't seem to be able to get a straight answer regarding preschool/school from anyone!!
i will pick your brains about it when I see you!!


----------



## Marleysgirl

sherryberry79 said:


> It must be nice though to know what the plan for the future is, and that everyone else is in on the picture too! I wish there was a multi agency meeting for Millie.......I don't seem to be able to get a straight answer regarding preschool/school from anyone!!
> i will pick your brains about it when I see you!!

Thought you might - I wrote this with you in mind!

I actually mentioned in the meeting that I had a friend based under Stockport with a similar preemie, and that we were comparing the two Council's approaches to monitoring progress. I think the fact that Andrew has an "official" special need, i.e. his hearing loss, means that he's already on all the appropriate lists here; whereas Millie's needs aren't being assessed. Does Portage have any contact with the Family Information Service (Stockport's is https://www.fil.org.uk/)? Andrew's progress is being managed by his Pre-Schools lady (Portage equivalent) and she works under Manchester's FIS.


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## sherryberry79

I am not sure if portage are affiliated with the FIS, but i will ask Gill from portage about this when I next see her. There are no plans at the mo for Millie to have a meeting like this, probably for the reasons you mentioned. 
Hope you and Andrew are feeling better by the way!


----------



## Marleysgirl

Still very snuffly at the moment, but getting better. Last weekend was a complete write-off!!!


I've finally found what the "332" reference means. It's a letter from Andrew's healthcare team (ie. the Child Development Team who met today) to the local education authority, alerting them to the fact that Andrew may have "special educational needs". I remember now that she did go on to explain, Andrew will probably need to be assessed by an educational psychologist before any kind of formal statementing.


----------



## Marleysgirl

Small snippets of news:

We got a copy of the "332" letter and it says exactly what I thought it would - that Andrew will probably have additional educational needs. Nothing more. I guess we wait and see!

He had his final appointment with the hospital's Paediatric consultant last week - but didn't actually have the appointment as she was running over 90 minutes late and we had to leave for another appointment. She has said (by email) that she's happy to discharge him to the community Paediatrician now (whose clinics are only 5 mins from our house).

And he had a third appointment at the Eye Hospital today - and they've discharged him too! Nowt wrong with his eyes other than shortsightedness, which we expected as it runs down my family. The fact he doesn't really look at us is more a behavioural issue than any sight problem.


----------



## Marleysgirl

Bumped for Beakerange :)

Latest updates: 

Audiology report that there is no malformation of his inner ears, cochlea or auditory nerves. So we are no further forward with measuring his level of hearing, and all we can rely on is reactionary testing. We could still be doing this a year or two down the line ...

We may have made a breakthrough on feeding :happydance: Today he has willingly eaten normal Stage 2 food, because I added herbs to it. We realised that the restricted diet he preferred, was heavy on herby meals ... So perhaps normal baby food is too bland for him? We may even be able to start introducing "our" food soon, so long as I add herbs to enhance the flavour.

(At what point do I have to leave here? He'll be two years old in a fortnight!)


----------



## Foogirl

Marleysgirl said:


> Bumped for Beakerange :)
> 
> Latest updates:
> 
> Audiology report that there is no malformation of his inner ears, cochlea or auditory nerves. So we are no further forward with measuring his level of hearing, and all we can rely on is reactionary testing. We could still be doing this a year or two down the line ...
> 
> We may have made a breakthrough on feeding :happydance: Today he has willingly eaten normal Stage 2 food, because I added herbs to it. We realised that the restricted diet he preferred, was heavy on herby meals ... So perhaps normal baby food is too bland for him? We may even be able to start introducing "our" food soon, so long as I add herbs to enhance the flavour.
> 
> (At what point do I have to leave here? He'll be two years old in a fortnight!)

Abby was 2 in April, I haven't left yet!!

Great news on the food. Mr Foo inevitably said when he tried Abby's food "would be fine with some salt.....". It is very bland!


----------



## AP

I'm so happy for you that Andrew is eating stage 2 food!! And its nearly his birthday!

Jeez im going no-where either now Alex is 2 - and this section needs your experiences MarleysGirl! I always thought the journey would be over now she's two but its not. Sometimes new mums like reading what could be ahead too - I know I googled LOADS for older prem stories when Alex was in neonatal!


----------



## Marleysgirl

Have to say that I'm inclined to stay - our preemies may be toddlers, but they still have issues that are related to them having been premature, so we need our little community to remain :kiss:


----------



## Foogirl

AtomicPink said:


> I'm so happy for you that Andrew is eating stage 2 food!! And its nearly his birthday!
> 
> Jeez im going no-where either now Alex is 2 - and this section needs your experiences MarleysGirl! I always thought the journey would be over now she's two but its not. Sometimes new mums like reading what could be ahead too - I know I googled LOADS for older prem stories when Alex was in neonatal!

Hey! I've just realised that's you!


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## Marleysgirl

*Happy 2nd Birthday
Andrew​*

From this:

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/DSC01382.jpg

To this:

https://i306.photobucket.com/albums/nn274/Tigsteroonie/Baby/CIMG5368.jpg

In two very fast and very fun years :happydance:


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## 24/7

Wow - HAPPY BIRTHDAY ANDREW!! He's beautiful. xx


----------



## Vinter81

Happy birthday Andrew!! What an adorable little boy he is!


----------



## AuntBug

Happy Birthday!! How adorable, thanks for sharing.


----------



## Foogirl

Happy Birthday Andrew!!

Where is the time going???


----------



## sleeping bubs

oh wow happy belated birthday Andrew  Can't believe how time flies


----------



## clairec81

Happy 2nd Birthday Andrew, you look fab!:thumbup:


----------



## Olivias_mum

Happy Birthday Andrew :) xxx


----------



## 25weeker

Happy birthday Andrew x


----------



## nineena

awww happy belated 2nd birthday xxx


----------



## Marleysgirl

We had a visit from the Speech Therapist today. (This was from a "speech" perspective, having been referred by the "feeding" therapist)

And she did nothing. She listened to him, commented on the fact that his cries/noises are multi-tonal. She had no recommendations, no suggestions for exercises. And she advised that she was discharging him into the care of the Teacher(s) for the deaf - and _wouldn't become involved for around another two years_

WTF???

I wasn't here (Daddy handled the appointment). On the one hand, it's nice to know that this won't turn into another raft of appointments for Andrew; and she obviously doesn't have any concerns; but surely she'd want to see him every six months or so just to see how he's progressing?


----------



## sherryberry79

Hmmm it does sound strange......maybe she feels that in another two years you will be in a better place to assess the level of hearing loss Andrew has, and that would determine whether his speech issues would be dealt with by the speech therapist or the deaf teacher......although that doesn't really make sense either because as you said, what harm would it do to catch up with Andrew every 6 months?!

If it makes you feel any better, I have not really found our speech therepy appointments to be of much help. It's not that he's not good at his job, it's just that most of what he suggests is pretty much common sense and we are already doing it! I don't mind going along to the appointments though as he is incredibly dishy (ssshhhhh don't tell Millie's daddy)!!! :blush:


----------



## Marleysgirl

I want your Speech Therapist :D

I just realised (comparing our sigs) that Andrew's adjusted age is just 2 days older than Millie - no wonder they're so evenly matched :kiss:


----------



## sherryberry79

Oh yes, I had never noticed that either.......he is not her toyboy afterall!!


----------



## Marleysgirl

Movicol doesn't half work ...

Andrew was switched over from Lactulose to Movicol by the Community Paediatrician last Friday. He had one sachet on Saturday morning. He pooped for England during Saturday (new nappy every daylight hour), but was grumpy with belly ache. Didn't give him any on Sunday as we were travelling and I didn't want him to be in discomfort. Decided to give it a rest today too, just to see whether things were getting back to normal ... He's been pooping for England again today, goodness alone knows where he's been storing it all :rofl: He went to bed an hour ago, and I put him in a clean nappy. I've just been up and he's gone again, and this time put his hands in and smeared it all over his belly - cue an emergency bath :rofl: But the difference today is that he hasn't been straining to go, in fact there's been no sign at all of him going except the smell.

Thing is, we've got three months' worth of the stuff ...


----------



## 24/7

Glad you have had some poo action, hope it all settles down soon. xx


----------



## Marleysgirl

Managed to get some more feedback from the Speech Therapist today (via A's care co-ordinator, who is also his lovely special needs support lady).

Apparently the therapist said that she wasn't really needed because A's speech is broadly in line with his development. If he were more developed but still not speaking, then she'd work with us to try and advance his speech so that it catches up.

So that's okay then. He's 6m behind in terms of development, and 6m behind in terms of speech too. Hmmmmmmmmmm.


----------



## Lottie86

Is it worth just trying half a sachets of movicol a day?


----------



## Marleysgirl

Lottie86 said:


> Is it worth just trying half a sachets of movicol a day?

I think that's what we'll have to do, as he's beginning to "dry up" again now. Are the sachets easy to "halve", do you know?


----------



## Lottie86

No idea, F is on 2 sachets and an adult dose of senna each day! :haha: I can't imagine it would be too difficult though.


----------



## Marleysgirl

Bumped (as it's an IUGR story)

Lottie, we have ended up on one sachet of Movicol every three days, that seems to be keeping him regular and painfree.

Big Boy Time - tonight, Andrew will be sleeping in his toddler bed for the first time. Or on the floor, wherever he ends up! Will take a photo tomorrow.


----------



## AP

Good luck tonight!!!! Clever boy!!! I still couldn't chance it :haha:


----------



## Foogirl

Yay! So exciting!!


----------



## Dona

Just popped in to say hello! Can't believe Andrew is 2 yrs old, only seams like yesterday since I first read your posts about him. I'm not on B&B much now but always like to read about how Andrew is getting on. Give him a big hug from Archie xx

Ps his picture is stunning xx


----------



## Marleysgirl

Hiya Dona, I hope that you are too busy with real life to be on B&B and it's not anything anyone has said - you could always wander into the Toddler forums occasionally :) Andrew's not much into kissing boys, can he hug Archie instead? ;)

Well, we made it through the first night with no stress. He did climb out of bed after I put him in (I could tell because something in the room had moved), but he then climbed back onto the bed to fall asleep - across the width!!! I moved him back lengthways when I went to bed and covered him with the duvet, and he stayed there all night. When I heard him this morning and went through, he was sat cross-legged on the bed playing with a toy.

So grown up. Well, physically anyway ... still waiting for his brain to catch up !!!


----------



## 24/7

Well done Andrew. :cloud9: xx


----------



## AP

How did his night in his big boy bed go???! Xx


----------



## Marleysgirl

AtomicPink said:


> How did his night in his big boy bed go???! Xx

I posted at 8:06 (before you did) with what happened :p No problems.


----------



## Foogirl

Marleysgirl said:


> Well, we made it through the first night with no stress. He did climb out of bed after I put him in (I could tell because something in the room had moved), but he then climbed back onto the bed to fall asleep - across the width!!! I moved him back lengthways when I went to bed and covered him with the duvet, and he stayed there all night. When I heard him this morning and went through, he was sat cross-legged on the bed playing with a toy.
> 
> So grown up. Well, physically anyway ... still waiting for his brain to catch up !!!

I love this. Getting out of bed to move something must have felt really exciting for him!


----------



## AP

:rofl: mornings aren't my best time! He did fab!!!!


----------



## Marleysgirl

He's just spent 30 minutes playing in his bedroom, the first time we've really left him in there if he's not been in the cot. (There's a stairgate on the doorway). We could hear him playing with toys - hint: if you want to know what your toddler is doing, give them noisy toys! - but he didn't stand at the gate and shout to be set free. 

I slept better not worrying about him climbing out of the cot and free-falling onto the floor (well, onto the spare mattress).


----------



## Marleysgirl

I know it's bad to keep bumping my own thread, but I wanted to write about today (which was a GOOD day) :)

_Background: I started weaning Andrew at 5-6m actual, at that time he was being fed puree'd fruit and veg that I made at home. Weaning stalled when he had epilepsy, all he wanted was milk. After that (and especially once I started work), he went onto jars & pouches of Stage 1 food. Due to a strong gag reflex, we only moved onto Stage 2 food a couple of months ago, and he will only eat two flavours. He won't finger feed at all. He still has the majority of his calories from milk, which he takes from a bottle. He refuses all other liquids, and refuses various different cups._

Today we had a visit from the Community Dietitian, who has reassured us that none of this is our fault. (We knew that but it's always good to hear!) Because of his epilepsy, his gag reflex and his developmental delay, Andrew didn't get to taste a wide variety of different foods and to experience finger foods before the *neophobic* stage set in. Toddlers apparently go through this stage where they have learnt that some things can harm, so they protect themselves by refusing anything new - in Andrew's case, he is frightened of any new taste and any new sensation in his mouth.

So, we have to roll with it. We are to try him with new flavours, but always have his favourites on stand-by to ensure that he gets proper meals. She is switching him from Infatrini onto Fortini, which is apparently even higher calorie (!) and sweeter. We are to try to get him to take his midday milk from a cup, but not the point of starving him; she still expects him to take bottles early morning and before bed. She said he might succumb to peer pressure when he joins nursery next year and the other kids are using cups :haha:

And apparently no child ever gets to eleven still eating baby food.

Tonight, Andrew let me clean his teeth without clamping his mouth shut. Proud mum moment. :kiss:


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## 25weeker

Glad your dietician reassured you.

Holly was supposed to be moving on to fortini now she is 8 kilos but I had a voicemail from the dietician telling me she is going to put her on paediasure plus instead. No idea why though!


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## AP

Ah! That's Interesting on the food front! And reassuring too - you're doing all you can! Hope that he learns quickly though, I bet it won't be long!


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## sleeping bubs

oh thats good with dietition hope he picks up trying new things soon. Mckenzie is on paediasure now been on it for 3months good comes in 4 flavours! But now down to 1 1/2 bottles a day though!


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## Marleysgirl

Apparently Fortini comes in flavours, but she's ordering the unflavoured version for us ... wonder why she's chosen Fortini, when others are on Pediasure? I'll have to google and play "spot the difference"

Not so good a day today at the Audiologist. We showed her videos of (we consider) Andrew responding to toys that play just noise. We played his favourite advert, and he paid attention for the duration and then returned to banging the table afterwards. But she insists that she cannot even consider that he may have some hearing until she can see a "consistent" response to particular sounds. We are beginning to think she won't believe it until Andrew actually turns around to her and says "I can hear that". Flippin' frustrating. She's turned his hearing aids up again - at least he no longer pulls them out, so doesn't have to wear a bonnet to keep them in. That might be because they're having an effect, but possibly just because he's getting older (c.f. the recent toothbrush acceptance).

Oh well. Some you win, some you don't.


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## Foogirl

I hate it when they make you out to be lying or fooling yourself. :nope: You know your boy best.

Can I just say, "Fortini" sounds like a cocktail!:haha:


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## sleeping bubs

don't u wish med people would believe u. The doc prescribed the vanilla first but mckenzie hated it so now he has chocolate strawberry and banana which he loves and as started drinking it out of the bottle it comes with with the straw which is an improvementx!


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## Marleysgirl

[This is a duplicate of a post over on the thread about Auditory Neuropathy. I posted it there primarily because the two other posters would be particularly interested in today's progress ... But I know a number of you watch this thread for news too!]



We had an Audiology Review meeting today (as opposed to his regular testing). One of our frustrations has been the Audiologist treating Andrew as if he is totally deaf, because he refuses to co-operate in behavioural testing. We had told her that we think he can hear, but she's never really believed and has come up with other thoughts e.g. vibrations

Until today. We compiled some home video that shows him choosing to play with noisy toys (no lights or vibration) and he controls the sounds, it's not random hitting but a most definite press of the button to repeat a tune. We also had footage of him responding to claps & high-pitched voice, and of course we had to show him responding to his favourite Underdog television advert. The Audiologist was completely taken aback by the video.

She now believes us, and wants to work with us to determine what frequencies he can hear, and to help encourage his "listening" ability (which is linked to his attention issues). No more talk of increasing the volume level on his aids, no mention of cochlear implants. We have come out of the meeting with a referral to a specialist Speech & Language Therapist who works with deaf children, and a potential referral to an Auditory Verbal therapist.

Progress!!!


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## Foogirl

Woohoo! I love it when they finally listen!:hugs:

The videos make it perfectly obvious he is hearing stuff - even to someone who doesn't know him. It is so irritating they refuse to accept sometimes parents know what they are talking about!


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## 25weeker

Brilliant they are finally taking notice of what you are saying.

Mum knows best :happydance:


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## Marleysgirl

Time for an update, I think!

*Eating* - Andrew's still being spoonfed, showing no signs of either grabbing the spoon himself or hand-feeding any other food. We are now up to three solid meals a day, he's on a variety of stage 2 & 3 meals at lunchtime as he continues to be relatively choosy about flavours. He still has 3 bottles of milk a day too. He has no interest at all in what we are eating, and if you hand him food, he drops it and then mouths a toy.

*Development* - significant developments this month include putting one toy inside another to increase the noise when he then hits the outer toy; and bringing a ball or toy train to us to roll across the floor so that he can chase it. This latter action is really good progress, as it means he is beginning to interact with us and understand that he can get our help/cooperation with things.

*Speech* - nothing, nada, zilch. Very tuneful with the vocalising and we get an occasional 'b' sound but nothing more. Now that his behaviour is changing, it's probably time to start again with trying to teach him signs.

*Hearing* - this has been the biggest change. As his behaviour has become more focused, last week he finally started to understand what was needed in the audiometry tests. He remains completely disinterested in the hidden/revealed puppets; but he loves the rotating and flashing amber light (think 'top of AA van'). He's associated hearing a sound in the test with someone switching on the light briefly - he hears the sound, turns his head, waits a second, and the light is activated as reward. Last week we got some test results from his left ear, today we got results from his right. And he does have hearing!!! He's got a mild to moderate loss in the lower frequencies, and a severe to profound loss in the higher frequencies. We return again next week to fill in the gaps on the audiogram (chart), and then they will tune his hearing aids to augment the higher frequencies more than the lower ones. We hope that once his aids are better tuned to his needs, that he'll start learning to listen to things around him and tuning into the world.

*Size* - I wish he'd put on some weight around his middle! He's growing consistently, still below 0.4th percentile. But he's such a skinny minny, if we get trousers of the correct length, they fall down from his middle! Roll on summer and wearing shorts.

*Pre-School* - our pre-schools advisor has said that she doesn't think he'd cope with mainstream pre-school from September, even with large amounts of support (though this was said before his recent improvements in development, and getting better hearing aids could also assist!) Andrew is 'on the list for discussion' to try and get him an assessment placement at a Special Needs nursery instead. We wait to hear about this, being in a social setting would definitely encourage him. I can't believe that a year ago I was worried about him going to nursery and now I'm keen for him to do so, I can see how it'd benefit him.

Think that's enough for now :)


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## sleeping bubs

hey marleys girl sounds promising he is developing in his own way  Thats good about Andrews hearing hopefully it won't take long to sort out his hearing aids so he can interact better 

And like you I was worried at sending Mckenzie to nursery, as he is small compared to his friends thought he would be pushed into the background but from seeing him today at a toddler group- some girls wouldn't let him play in the house and kept pushing him away and shouted at him he stood his ground and kept getting up when they pushed him over and scratched his face and went into the house and by that time the girls where taken away and told off they were 3-4yr olds though, I Felt really sorry for him :-( but he doesn't seem bothered by it.


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## Marleysgirl

Add another one to Andrew's list of issues :rofl:

The physio has visited and apparently he has 'pronatal' feet, meaning that he's putting his weight on the inside (think knock-kneed). He's now going to have a referral to a chiropodist or podiatrist or someone (can't remember who) to get special inserts for his shoes.


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## lynne192

huge hugs hun on your little fighter read his list of extra needs my DS is almost 5 and his isn't much better than your little ones so hopefully he will improve my DS was a 33weeker.


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## Foogirl

Abby's feet are the same (I think) it might be the outside she puts the weight on. It's an Orthotist who does her shoes, not to be confused with the orthoptic who does her eyes or the orthopedist who looks after her bones......:haha:


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## Marleysgirl

Thanks for clarifying who it would be. Googling that for this area, it would appear that it's based at the hospital. Darn it, I dislike going back there because the parking is so expensive.


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