Andrew - born at 29 weeks!

[Foogirl]

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

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

 

[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 ...

 

[premmiemum123]

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...

 

[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.

 

[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.

 

[sherryberry79]

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

 

[Foogirl]

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.

 

[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

 

[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.

 

[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

 

[Foogirl]

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!!

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.

 

[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!

 

[Foogirl]

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.

 

[Marleysgirl]

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.

 

[sherryberry79]

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?

 

[Marleysgirl]

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

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

 

[sherryberry79]

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

 

[Jemma_x]

Hes gorgeous c

 

[Marleysgirl]

Rooming-In

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[Foogirl]

Rooming-In

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

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

I'm so pleased.