# Introducing Amelia Grace (now I promise to stop hi-jacking Marleysgirl's thread!!



## sherryberry79

Amelia Grace Pedersen was born on August 3rd 2009, very unexpectedly at 
26+3 due to my developing pre-eclamsia. Millie was 620 grams at birth and is currently 1050 grams. She is doing well, but she is not gaining weight as very quickly, the doctors feel that she is being held up by the PDA she has. Although it has not yet been confirmed, it seems very likely she will have an operation to close the duct in her heart, hopefully then she will get bigger and stronger.

The pic below was taken three weeks ago when she was on C-pap, unfortunatey she is back oon the ventilator now and has been for over a fortnight. I love this pic as she looks so wide awake and alert, I think she is gorgeous but I am biased somewhat, it's my fave Millie pic! Millie was eight weeks old yesterday!

https://i807.photobucket.com/albums/yy357/sherryberry1979/th_010.jpg


Hope this pic works!


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## Jemma_x

Aww she's gorgeous x


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## dannigizmo

Aaaaw she looks sooo cute, reminds me so much of my lo!!! Glad she doing ok, you will all get there hun. Emma was 660 grams born due to high blood pressure and had her pda closed at 11 weeks old and respirtory wise came on so much after the op, was great.

Sending your wee one love and cuddles from wee Emma!! xxx


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## bumpsmum

welcome officially sherry :happydance: Millie is absolutely gorgeous and doing really well, im sure as son as the PDA is either resolved itself or closed surgically her weight will improve and im sure the ventilator will be only a temporary setback x


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## sherryberry79

Thanks ladies! Everyone here is sooo supportive and and enthusiastic, it's brilliant.

Jemma - it's nice to know I'm not the olky one who thinks she's gorgeous!

Dannigizmo - it's such a relief to hear that your gorgeous Emma went through the same op and you saw her really improve afterwards, I feel so blessed that Millie is making progress, I just can't help but wish it was moving a little faster, maybe after the op it will! Millie sends a cuddle back to Emma, I am so happy she is doing well.

bumpsmum - thanks for the welcome, I am sure you're right, she will be off that ventilator again in no time!


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## Early_Bump

hi hun what a little stunner... ive had in order...

33wk
22wk
28wk
27wk
25+6wk
24+3wk
25+5wk

So ive done your journey many times hun, shes so beautiful hunni... good luck with the pda, lily my 25+5 weeker had it she was on and off vent when flow got to much for her lungs but the ibophfen closed it thankfully xx


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## sherryberry79

Thanks earlybump, with all your experience of preemies I will know who to ask if I have any questions! I hope your current pregnancy is progressing well, and in the nicest possible way I wish you a very long and boring pregnancy!!!


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## Dinoslass

Aaah, she is so cute!


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## louise1302

shes so adorable :)


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## Early_Bump

sherryberry79 said:


> Thanks earlybump, with all your experience of preemies I will know who to ask if I have any questions! I hope your current pregnancy is progressing well, and in the nicest possible way I wish you a very long and boring pregnancy!!!

AWW THANKS HUN... my waters broke 4 and half weeks ago so im just plodding along, its happened like this is last 3 pregnancies so im just playing the waiting game, i had low fluid today but just bottom end of normal. max is aorund 1lb 4oz at mo, cerivx is now 1,8cm i also failed the fibronectin test so they expect delivery between 25-26wks xx


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## Foogirl

Wow! Eyes open wide awake!!

She is absolutely gorgeous.


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## grumpymoo

she is such a sweety, you must be sooooooo proud!


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## Marleysgirl

Millie looks a little sweetie, Sherry, you must be so proud to have a preemie fighter :kiss:

Have you heard what they want to do about the PDA yet? ETA - never mind, I just read your response on Andrew's thread!


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## Fluxuspoem

She is so beautiful! you must be so proud of her! xx


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## premmiemum123

Aww she is so gorgeous...how cute is that photo...wait until she is off CPAP and you get to see her full face, it will happen before you know it...the ventilator is just a setback, you will experience some of those, we did with our LO and look at her now...8lbs of roly poly fat and acting like a newborn...you think you will never get there but you do so quickly....

Focus on the positives and keep strong, you little one will pick up on this and thrive...

As for the PDA once it is closed I am sure the weight will pile on...she is not doing bad so far, she is over a kilo so that is great, getting stronger everyday...x


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## Bec L

She's gorgeous hun, congratulations xx


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## Dona

Awwww Amelia is a wee stunner. Welcome to the forum. I look forward to the many update that lie ahead! More pictures please ! xxx:cloud9::cloud9:


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## sherryberry79

Thank you everyone.
Yesterday on the unit we met Marleysgirl and her beautiful son Andrew, he is gorgeous. It was really nice to meet you all, I am sure our paths will cross on the unit again, although maybe you will not be there for much longer if Andrew continues to prove how big and strong he is which I am sure he will!

We had a chat with Amelia's consultant, he told us that from the latest echo they can see that the duct is still there and is quite large. He said her whole heart is bigger than it should be because it has to work harder to do its job, her heart is effectively swollen. 

He feels that although Millie will still have the seperate issue of the weak lungs, once she has had the operation if we can take the heart problem away from the equation then we will see more progress.


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## dannigizmo

hey hun, well am sure all will go totally smoothly with the op, they do so many and its pretty straight forward. 

am just glad it isnt at yorkhill for you!! When we met the surgeon that was performing Emma's he reminded us of father Jack from the Father Ted program!! Honestly, i thought he was drunk but he just like that, i nearly laughed when he was talking which was crazy as Emma was going for an op but you know that eventhough all thats happening is so serious, just a little thing makes you laugh, thing cause it doesnt feel real.

Am sure she will totally come on after the op, Emma took a wee while but was a totally different baby after it, was great and after a week she was off ventilators, cpap and o2 for good, well atleast until she needed another bowel op or something!! xxx


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## sherryberry79

Thanks for your reply! It's really encouraging to hear how much Emma progressed after the operation, I hope Millie takes her lead. It sounds like you and your little one have been through alot, but in her pic she is just sooooo cute, all big eyes and smiley.....with a hint of cheeky monkey about her!!!


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## Marleysgirl

Hiya Sherry, apologies for not posting sooner - laptop problems - but Millie is a wee cracker! :kiss:


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## DiddyDons

aw shes lovely x


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## nkbapbt

She's beautiful! Congrats hon!!


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## Sherileigh

Your baby is beautiful!! Congrats...can't wait to hear more updates and see some more pics of her!


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## Marleysgirl

Any news, hun?


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## sherryberry79

Hi, not too much to report, had a tough week really. Millie was scheduled to have the PDA op on Thu but because she had some consolidation on her right lung they were unable to go ahead with it. During the op they collapse the left lung so the right has to be as good as it can be. Hopefully they will X-ray her again tomorrow and find it has improved, then we can cross her fingers the op goes ahead this week.

Her tummy has been big for weeks, they had been telling us that it was trapped air, and that the air was visible on X-rays. I was dubious from the start that her tummy could be THAT big purely due to trapped winD, but I trusted them, you have to really, but now they don't think it is just trapped air. On Friday she had a contrast study, and we have not had ANY form of feedback, they say that the Doctor needs to write a report, and he was not in over the weekend. I understand he has to write a report but I would have really appreciated a very brief verbal interpretation of the results. Just to know whether or not there looks to be anything wrong, but apparently that's not possible, so we are still in the dark.

Every Thu she has had her ROP check. We were told that Julie (who does them) would not speak to us unless there was a problem. Every Thu when we ask for the results they tell us that she has not written in Millie's notes, therefore everything must be okay. Then at 8pm Thu evening Julie calls us to tell us Millie is at stage 2, which came as something of a shock as we had never been told she was at stage 1!!

Just feel like the communication is not what it could be, and I resent having to chase info about Millie, but form now on I shall be making damn sure I do. The nurses are all wonderful, but Millie's consultant is not as forthcoming as he could be! Sorry to have such a moan, as I say, it's just a bad week. Nobody said this was gonna be easy! Hope you and your wee man are doing well x


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## sherryberry79

Here is a pic to give you an idea of what I mean about her big tummy. It's not the most flattering pic of her (I'm sure she would not thank me for posting it)!

https://i807.photobucket.com/albums/yy357/sherryberry1979/027.jpg

Poor little thing, it looks so uncomfortable, but it does not seem to bother her.


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## dannigizmo

Hey hun, you are not moaning at all and no wonder you must be round the bend with the lack of communication. We felt the same at times. Hopefully you will get some answers tomorrow though it is totally awful you have to wait!!


Emma had stage 3 ROP and was given laser surgery that was sucessful first time. If you have any questions about tummy issues just ask, am well versed in that department, but if it was anything like nec they would have known by now am sure as her infection markers would be up. And once she is stronger and got passed all this she can get her PDA closed, emma's wasnt closed for 2 months. 

I know this is a terrible, unsure and scary time for you, and we are all here for you and your babe. If you need anything just ask. Thinking of you all xxx


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## dannigizmo

And no matter what she has got on her face, she is beautiful hun!! 
Am just making a journal scrapbook for Emma's first birthday and all the pics, warts and all, going in, sure she will love me for it haha!!:hug:xxx


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## grumpymoo

she is absolutely gorgeous and so strong, and so are you!
:hugs: bless you both for what you are going through at the moment x


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## premmiemum123

She is so gorgeous it brings tears to my eyes. She is so beautiful and a little fighter.
Emily's stomach was massive and it used freak me out when they weighed her and she was naked, yet nothing was wrong with it. She was just being force fed and her stomach was bloated.

I hope Millie's lung improves and they go ahead with the op...fingers crossed.

AS for the consultant, I think it is poor that they have not spoken to you. I would demand some time with him/her and go through her current condition. These hospitals vary in communication (which annoys me as it is inconsistent), when I was at St Peters in Surrey, I was able to talk to the doctors and consultant everyday as they let us stay in the room during ward rounds. If I ever missed them I would ask the nurses to request the doctors to visit me to discuss Emily's condidtion and they always did. However, when we were moved to East Surrey, it was so different, I felt I didn't know what was going on as the doctors were reluctant for you to stay in the nursery during ward rounds and then didn't bother to come and see you if you were waiting outside. In the end I used to always say to our nurse, please can the doctor talk to me after the ward round, even if it was just to say there is no change. You do have to be pushy as they are so busy and sometimes they forget these poor little mites have worried, fraught parents that want to know what is going on. 
At the end of the day we are our babies voices, that is what I kept telling myself when I felt I was being a nuisance to staff. 
I think sometimes you have to think, well if it was really serious then they would pull me into a side room to discuss it.
I don't think they tell you everything as there is so much you could worry about unneccesarily and it could be too overwhelming. Your well being is as paramount as your little ones, as you are her will, willing her to grow and get stronger. 
Definitely push to speak to the consultant, it is your right as her mother.

Big hugs and thinking of you all always....x


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## Marleysgirl

Thanks for the update Sherry, and kisses to Millie - I hope she's well enough to go for her operation this week.

Andrew's tummy is a little swollen, but nowhere near as bad as Millie's - they keep saying it feels soft and is okay. However his scrotum is pretty swollen and we are having trouble getting anyone there to be concerned - nurses keep saying it might be a hernia and they report it, but nobody seems happy to commit or otherwise.

I'd agree that it's tricky to see the consultant to get an update, and we've started making a definitive request every other week to sit down with ours for a chat (we've got Dr Gottstein). 

With regards to the ROP, I don't think they "go through" stage 1 before stage 2 - it's more a description of the level of scarring - hence why you wouldn't have had prior warning. And from what I can gather, it can just "appear" between checks, so it's not that it wasn't picked up before, more that it's probably just happened. Andrew was clear on his first check, but has showed stage 1 on his second & third checks. 

Hugs to you all


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## sherryberry79

Thanks for all your replies girls. It's such a comfort to log-in and read all these wonderful messages of support. I went out on Saturday and got a bit tearful. Although my friends are great and try so hard to say the right thing, they've not been through it and have no idea just how hard this is. It's great to be able to talk to people on this forum who have been/are going through the same experience.

Millie has been pencilled in to have her op at Alderhey on Wednesday. They want her there at 10am with a view to operating in the afternoon. They have stressed that this is subject to there being a bed for her, and of course her being well enough, so keep everything crossed for her!

Still no news on the results of the contrast study. One of the doctors has looked on the system, but her X-rays had not been entered yet, he has promised to chase the X-ray dept tomorrow so hopefully we may get some answers. He said reading between the lines though, no news is probably good news.

Once again ladies you have been such a great support with your words of wisdom and comfort, I think you are all brilliant x


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## sherryberry79

Hi girls,

Amelia had her ligation operation at Alder Hey yesterday, the duct in her heart is now officially closed:happydance:. The surgeon was brilliant, he said it is the largest duct he has ever seen on a baby of Millie's size! The operation was a success however, and apparently as soon as the duct was closed her circulation improved. Right now she is recovering from the op, she will remain on morphine until they have removed the drain, which they have said will be done this evening....in fact by now it may well be out. Her ventilation level is the same as it was before the op, but they are going to start weaning her very soon, we hope to see her off that ventilator in the next few weeks.

When the cardiologist performed a heart echo at Alder Hay he found an abnormality with Millie's heart. He said it's something he has never seen before and may well not be a problem at all, but if it should need attention he said it should be a very simple procedure, where they would insert a balloon. Trying not to think about it too much right now, as he seemed to think it would not give her any problems for the time being, but it will be monitored. 

Yesterday was a very worrying day and by the time we arrived home from Liverpool we were both shattered and nursing stress headaches!


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## Foogirl

So glad it has gone ok. Here's to a speedy recovery and having her home soon.:hugs:


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## sherryberry79

Thanks Foogirl, we hope she comes home soon too, there is a long way to go but she will get there. Ur LO looks like a cutie in ur pic!


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## Foogirl

Thanks, she does get cuter by the day!


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## Marleysgirl

I'm so glad that the operation went okay - here's hoping that Millie now starts making great progress! 

Andrew waves at her - but from further away, he's in Room 2 now!


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## dannigizmo

Thats great the op went well hun. I think she will come on leaps and bounds now and wishing her home in your arms very very soon. xxx


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## sherryberry79

Great news that Andrew has been promoted again, he is doing brilliantly.

Millie's ventilation has gone right down, they were talking about trying her on Cpap, but unfortunately her CRP has shot up, they are concerned she may be brewing an infection so for the time being she will remain ventilated. 

Another stressful day for me and my OH. We are both feeling pretty grotty so we only stayed at the hospital for ten mins today and could not open her incubator to even touch her for fear of passing something on. 

When we got home from hospital my OH had a phonecall from his company to say they had miscalculated his vacation. He is Danish and works as a navigation officer on a Danish ship. He works two months away at sea and then he comes home for two months. We had been told he could be at home until December 1st, by which time we were hoping Millie would be home. Now he has to go out sailing on or around Nov 1st, and there is no chance of her being home before that. I have to admit, the thought of being at home with Millie on my own really scares me. I am a first time mum and I am worried I am going to feel overwhelmed with the level of care she may need, what if she comes home on oxygen? My mum is not far away, and I know she will be there for me, but it's not the same as bringing your baby home with your partner. So many times we have seen parents leaving the hospital with their little ones and have been looking forward to Troels and I walking out of St Mary's with Amelia all tucked up in her car seat. Obviously Troels is very upset too, he wanted to have a little time at home as a family before he had to go out sailing.

Ever get the feeling that life is really kicking you in the balls? I just think we could do with some good luck now, and this has come as a real blow, totally unexpected. We have no choice though, we need his wage. I am sure I will get into a routine with Millie quickly enough, and maybe it won't be as hard and scary as I think, but it's not what either of us envisaged. Sorry to have a moan girls :(


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## Foogirl

sherryberry79 said:


> Ever get the feeling that life is really kicking you in the balls? (

I hate it when all the shit comes at once. What is it they say "What doesn't kill you makes you.....feell like it had!!"

It is sad you won't be able to take her home together, but, please don't worry about not being ready. By the time she comes home you will be an old hand at the whole thing. Of course it was a little scary thinking about it but I can say with certainty, for all the fears I had, there was not one point that I thought "how do I do this" once she was home. You'll drive yourself nuts with the "what if" scenarios.

We always said when looking for the silver lining to the situation, we got to learn how to care for our daughter with a dozen highly trained people watching. After 6 weeks of that, we knew exactly what we were doing.:thumbup:

Do you have a relative or friend who can stay for the first couple of nights to make it less daunting? Also, our hospital offered us the option to room in with Abby for a night or two til we got used to it. We chose not to because having both of us at hime, for me was a better option, but you might find it helps.


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## sherryberry79

Well we should definately be strong after all this! You're right we have ti look for the silver linings. The more I worry about it the more I am going to build it up into a massive thing and fear her coming home. My mum would definately come and stay for a few nights when she comes home. I'm not sure if the hospital have the oppurtunity to room in, but if they do then I will take them up on it. Thank you you for your suggestions x


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## Marleysgirl

:hugs: to you Sherry (& Troels) (& Millie, of course)

To answer, yes St Mary's does have rooming-in facilities - brand new, of course, like the rest of the hospital! They're down one of the corridors at the back of the NICU unit. They're pretty basic though, just a bedroom and private bathroom, from what I saw. They were getting pretty full today - I overheard the Sister trying to juggle room numbers & mums. I'm hoping to room-in for one night before Andrew comes home, and possibly before then if need be to get BF established.


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## sherryberry79

Hi ladies,

Amelia is soooooo much better after having her op last Wednesday. She has been on C-pap since last Saturday and is doing really well on it. Today we saw her full face for the first time, and I have to say, (even if I am somewhat biased) she was gorgeous!! It was so wonderful to see her without a ventilator tube or a C-pap mask....and to be able to touch her head and see her fine hair. She was looking up at me and daddy with a slightly puzzled look on her face, as if to say "are you sure the doctor said that mask could come off? I usually have a tube in my mouth or a mask on my face 'ya know?" But she stayed off the C-pap for 10/12 minutes whilst we had a cuddle and tolerated it very well, without any bradys or de-sats. The doctor felt that he did not want to push her too far though, and that leaving her off the C-pap until she did hit difficulty might not necassarily be beneficial. Funnily enough as the nurse laid her back in her incubator she had a little de-sat, but came back up quickly on her own. We are so proud of her today, and I can't wait to get to the hospital tomorrow as I would love to have another non C-pap cuddle. I am getting greedy now, like a junkie, only I need the next cuddle fix with beautiful Millie!!


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## Foogirl

Yay Millie.

She'll be starting school before you know it!


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## sherryberry79

Arrrrgh!!!! Not quite ready for that yet....lets get her home first, lol!!!!!!


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## Marleysgirl

That's really good news Sherry - I remember how delighted we were with Andrew's first tube-free cuddle, seeing his cute hair ...

Take loads of photos in those few minutes!

They'll soon have her cycling on and off Cpap, extending those hours off and preparing her for breathing on her own.

Is Millie still in the same spot? I keep looking for you but don't see you, and don't like to go noseying to find her. Andrew's in Room 2 (3rd bed on right) now, and I'm there from 12noon onwards these days whilst we get BF established, so feel free to come and find us (even if curtains are closed)!


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## Jemma_x

She is gorgeous and im glad she's doing alot better since her op


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## sherryberry79

Thanks Jemma!

Marleysgirl, how are you? Sorry for the late reply, things have been crazy for the past few days. I turned 30 on Saturday and on Saturday I celebrated by making up for the last eight months of not drinking. Broke my heart to pour Millie's EBM away, Sunday was pretty much a write off!

Because Troels is going back to work sooner than expected we have had to order and build the furniuture before he leaves so I am not left on my own to do it......DIY aint my strong point! We finished yesterday and it looks lovely, still need to buy cot bedding, pictures, curtains etc so its not finished yet but it's starting to look like a nursery.

Troels leaves tomorrow, so we have been washing and packing and generally tying up loose ends before he leaves, and all this whilst spending time with Amelia....busy bees!!

Millie has moved to rm7 now, she is in High Dependancy, so a step in the right direction! She is having time off her C-pap and doing well, the most she has managed in one go is five hours so far, but she is really getting there now!
They are talking about transferring her back to Stepping Hill when a bed becomes available if they feel she is ready. I am fine with this as I spent a week after Millie's birth there and they were great, plus I much prefer the journey there, but St Mary's have done so much for Millie, I will be sorry to say goodbye to some of the nurses.

How is it going with the breast feeding?


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## dannigizmo

She is doing soo well hun. Busy time for you, i was knackered just reading what you had been up too!! 

Hope your feeling ok with all the changes that are happening and managing to take some ME time. Happy belated birthday and wont be long to your little star be home am sure!! xx


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## Marleysgirl

Hi Sherri

I'm glad that you're getting the nursery sorted and, with Troels away, it makes sense for you to try and get Millie moved closer to home. It's great news that she's been promoted to Hi Dep, I shall have to try and find her & you in Rm 7 before she leaves, I think I pass that room on the way to the Parents Kitchen! (I've been allowed to use it as I'm now on-site almost 10 hours a day)

Well done on the Cpap periods off, every day they will increase. I used to have to ask in the morning phone call what the day's routine would be, just so I could try and visit when Andrew wasn't connected.

Can I suggest you try and have a chat to Kath, the BF advisor? I've seen her a couple of times now, and she thinks (benefit of hindsight) that we should have tried Andrew at the breast much sooner (whilst in Hi Dep), if only for a few minutes at a time, so that he'd get used to the sensation. 

Off to update my own thread now, rather than clog yours!


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## sherryberry79

Hi ladies,

Amelia was transferred to Stepping Hill Hospital today. When I arrived at St Mary's they informed me that they had found a bed for her and she was off! It has all happened very quickly but I think visiting etc will be easier from now on. Not much change on the Cpap front. They transferred her without Cpap but I think she was only off for two hours max, but I guess that being moved etc might have tired her out more quickly? Millie's daddy left this morning to work at sea for the next two months so I have been very tearful all day and am dreading going to bed all alone tonight, but I suppose it will get easier after tonight. We only moved into this house in September so I have not been alone here yet, what with everything that's going on at the mo it's all a bit scary. 

But things are going well with Millie, it's so wonderful to be seeing some progress, her little legs and arms are getting meaty! And I know she is gonna be going longer and longer off the Cpap in the days to come....I'm so proud of my lil star!!
And here she is!!

IMG]https://i807.photobucket.com/albums/yy357/sherryberry1979/001.jpg[/IMG]

https://i807.photobucket.com/albums/yy357/sherryberry1979/th_003.jpg


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## Marleysgirl

Great photo - it's lovely to see them start to "plump" out, isn't it :)

Good news about the move, as you say they tend to do it a bit suddenly, but it's for the better. No point me looking for you now!


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## premmiemum123

Awww, she is so cute...it is lovely when they start to put on lots of weight...x


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## sherryberry79

Thanks Premmiemum! She is 3lb 9oz now, the nurse said today that they no longer treat her as a tiny baby which made me so happy!!


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## premmiemum123

Wow she is near the magic 4lb mark, it is wonderful when they get to that mark, they start to feel like a 'real' baby with little tiny rolls of fat. 
They put on so much weight once they are discharged enjoy Amelia whilst she is still so small, I took Emily home at 4lb 8oz, that was 8 weeks ago, she is now 9lb! I look at her and think where did that tiny baby go...


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## embojet

She is doing so well, the photo is adorable x


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## sherryberry79

Hi all,

Millie is doing great these days. The doctors are slowly weaning her off the C-pap, she is currently doing 7 hours off and 2 hours on, she really hates that mask going abck on, and even though I know it's for her own good it breaks my heart to see her so upset and fighting the nurses. The plan is to continue invcreasing her time off every few days up to ten hours as far as she tolerates. The nurse tells me that once she gets to ten hours off (aiming for this time next week) the next step will be to remove the Cpap completely and see how she goes, she may need a few hours over night apparently. 

I have been told to fully expect that she will come home on oxygen which terrifies me quite frankly, but she is three and a half months old now and I just want her home, oxygen or not! They assure me I will be very confident in controlling her 02 by the time she is discharged. I think she is on 0.2L of 02 at the mo. 

She had her first bath last night and really hated it, screamed the place down! But I enjoyed it and our snuggle time afterwards!

Breast feeding is hit 'n miss and frustrating. Yesterday she had a brilliant 3pm feed, and we did not even need to top her up via the tube. This morning I got to the hospital at 
06:40 to try her at the breast for her 7am feed. I often get there very early, and when I called for an update at midnight last night I told the nurse to expect me for her 7am feed. When I arrived the nurse told me she had given Millie 20mls via her tube at 6am as she was wrestless, and it was the only way she could get her to settle. Settle she did, because when I tried her at the breast she showed absolutely no interest what so ever. I ended up making up the other 40 mls via her tube. Then at 11am and 2pm still no interest in the breast, and there is no explanation for why this would be the case on those occasions......I really hope we can crack it, but it's just so erratic, sometimes she has it, and others she has no idea, have requested an appointment with the nursing specialist!


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## Marleysgirl

sherryberry79 said:


> Millie is doing great

Woohoo! :thumbup:



sherryberry79 said:


> I have been told to fully expect that she will come home on oxygen which terrifies me quite frankly, but she is three and a half months old now and I just want her home, oxygen or not!

We were told this too. They even started organising the meetings. Then Andrew heard about it, and decided he didn't want that, so he started pulling his nasal cannula out and throwing it out of the cot .... Seriously though, after staying on 0.4ish for ages, he went down to 0.2 and then through the low-flows (0.05->) over just a couple of days. It's true what they say, when baby is ready, they just do it.



sherryberry79 said:


> Breast feeding is hit 'n miss and frustrating. Yesterday she had a brilliant 3pm feed <snip> when I tried her at the breast she showed absolutely no interest what so ever <snip> I really hope we can crack it, but it's just so erratic, sometimes she has it, and others she has no idea, have requested an appointment with the nursing specialist!

I wish you luck. I saw the BF Advisor in St Marys three times, and every time she told me that I was doing it right, it was just that Andrew wasn't ready. Even now we're home, we still only manage one really successful BF session a day, the rest of the time he's too disinterested, doesn't latch, too frantic ... It was definitely a good move to introduce the bottles, as it was the only way to get him home, and he continues to do well.

Hope you're doing okay now you're on your own :hugs:


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## sherryberry79

You never know, maybe Millie will come off the oxygen very quickly like Andrew, I hope so, that would be fantastic, and would make life much less stressful on coming home, but I am preparing myself for dealing with the oxygen. I think I am going to find the breast feeding specialist as useful as you did! The nurses have already given lots of advice and checked our positioning etc, I am not sure what there is left to be said, but it was out of desperation that I requested a meeting today, I guess it's worth a try!!

I am doing okay, Troels will have been away for three wks on Wednesday so there is only around five wks left to go now! It will fly by, just wish I could have fallen in love with a bank manager who would not bugger off to sea for six months of the year, but hey ho!

I am keeping an eye on Andrew's thread, hope you're all okay, it certainly sounds like you're all doing great :)


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## Foogirl

sherryberry79 said:


> I think I am going to find the breast feeding specialist as useful as you did! The nurses have already given lots of advice and checked our positioning etc, I am not sure what there is left to be said, but it was out of desperation that I requested a meeting today, I guess it's worth a try!!

Abby really didn't crack breastfeeding until the week before she came home. Once she had the tube out, she gave it a better go at it.

Are you using a shield?


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## premmiemum123

Great to hear Amelia is doing so well...fingers crossed she decides she doesn't need oxygen...you can't tell what they are going to do next, they surprise you everyday, even when they are home, everyday is different. 

Good luck, look forward to reading your next posting...x


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## bumpsmum

glad Amelia is coming on so well, nearly 4lb already she'll soon have those gorgeous chubby cheeky and legs xx


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## grumpymoo

Just been having a BNB catch up properly at last!

How is Millie getting on these last few days?

I am so glad she is nearing the 4lb mark, you must be so so pleased! That and starting to get some baby fat on those legs. Rose had the old sparrow legs and when they started to get fat I was so thrilled, even now I am. Cant stop squeezing them. Poor baby:dohh:
Anyway I really hope Millie is doing ok, she is certainly getting closer and closer to coming home with you. How exciting! :happydance:


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## sherryberry79

Hahaha I can't wait to squeeze Millie's chubby legs too!! She is doing well, she does ten hours off the C-pap then 2 hours on, Once they can wean her off completely they will begin to think about shipping her into the next room, the nursery. V.excited about that prospect! She had a bath last week, her first bath at three and a half months old......I hope she is not starting as she means to carry on as we will have one hell of a stinky teenager on our hands!!
She hated her bath, and screamed from start to finish, when she goes to the nursery I will be able to bath her much more regularly.

She now weighs 4lb 5oz, the doctors really feel though that the quicker she grows the quicker she will improve her breathing side of things. For a while now she has been on 50% EBM and 50% pre-aptamil formula, as the doctor said there were more calories for her in the formula. They have now decided to change her to a formula that has even more calories, so in the next week or so we should see some good weight gains. Her o2 requirements have not changed, still 0.2, they have given me the bliss leaflet about coming home on 02 to start preparing me but we will cross that bridge when we come to it!

I have had a dodgy week emotionally, dangerously close to tears all the time, so it only takes a questionable comment from a snappy nurse or a baby who I know was only just admitted going home to set me off. The only way I can describe it is, imagine you have 5 levels of emotion from (1) totally chilled to (5)actually crying, most of us run day to day at about 2 and work our way up to 5 before we cry. Well these days I seem to run on a 4, it only takes something small to set me off. I even cry at the good news, they told me they feel her ROP is improving and that she may not need lazer surgery, I balled my eyes out. I'm sure they think I'm totally wacko!:wacko:


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## Marleysgirl

I must say, the last couple of weeks I found incredibly emotional and had many a good cry at various frustrations. I think it's because the end is so close, yet not quite there.

Interesting that they've encouraged Millie onto formula, my docs/nurses have been very reluctant and I'm only feeding Andrew on NutriPrem2 because I'm not producing enough EBM.


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