Can't take any more of this :(

[katy1310]

Hello

As some of you know, Sophie was getting her sleep study this week to see about her coming home after being in neonatal for 11 weeks. She was still on CPAP a week and a half ago and still being tube fed till Tuesday last week, and I was meant to come up to the hospital to stay for a couple of nights to try to start breastfeeding. The plan was to do a morning and night feed and the rest by tube for a couple of days.

Well on Wednesday she had her sleep study and they decided to demand breastfeed her for ALL her feeds starting on Tuesday afternoon. On Wednesday during her sleep study she had huge dips during feeding and went floppy and blue which terrified me. They decided then that they had pushed her too much with the feeding - which I was thinking anyway..it's a lot for her to learn. There was talk of reflux but that has not been mentioned since.

Anyway, the sleep study was abandoned and they said it would be redone. I got the breastfeeding well established that night and the next night with a wonderful nurse - I'd have abandoned it if it hadn't been for her. She has still been desatting during her feeds all week but we discovered yesterday she has been getting wind because she guzzles then she curls her toes up and that's when she desats. If DH sits and rubs her feet while she is feeding, she doesn't curl her toes and there are no desats.

So...they did another sleep study on her yesterday. It was meant to be a 24 hours study, due to be finished at 11 this morning. When we went along this morning we were told it had had to be restarted at midnight because one of the night staff had not realised it was in progress and had used the computer for something else!! They were just intending to do a 12 hour one though.

When we went back in, the nurse said it was looking like she would be going home on oxygen Her saturation levels need to be 94 and above and Sophie's are averaging 92-94 but they do often go up to 98-100 as well.

I got really upset at the thought that we would have to do that. I was trying to feed Sophie while she was saying all this and I didn't have a successful feed - think Sophie was picking up on my stress and was really fussing.

I ended up rushing out of the nursery in tears and sat in the room for a while. Spoke to Dona (from B&B) and she said that we should give it a bit longer and not let them push us into taking her home on oxygen. She's right, I'd rather wait another week or two and give her a chance for her saturation levels to improve. And SB22 also said a week made a difference to Alex when she was told the same about oxygen.

I just wish they hadn't done the sleep study so soon - I think Sophie has not been ready for it but it has really messed with our heads. We ended up having to stay up here for 6 nights having come prepared for 2 nights and that's twice we could have been getting her home.

I think they should have given her a chance to get used to being off CPAP, introduced the breastfeeding gradually and waited even another week from now to do the sleep study. Oh and the first nurse looking after her yesterday didn't know she was meant to record on the sleep study when sophie was having a nappy change, feed, cuddle etc.

I just feel like there have been so many ups and downs. Sophie is slow and steady and DH and I know that. We used to wonder why other babies were quicker off CPAP etc but lots of them ended up taking steps back whereas Sophie has progressed more slowly but steadily with no steps back. I am pretty sure she just needs more time. Even today I can see a difference in her saturation levels when she is feeding and she was up at 100 a lot today.

Sorry for the big moan but just feeling really down

 

[25weeker]

Sorry to hear sophie didn't pass her sleep study. I agree with Dona a week makes an amazing difference and as her sat levels are nearly there I don't understand why they want to send her home in oxygen.

I found sometimes they do try to do too much at once. One weekend they stopped Hollys caffeine, put her on two hourly feeds and give her the first set of jabs. On top of all she had a cold so she ended up back on cpap. They had talked of doing holly's sleep study earlier than they did and I asked the nurse why since there was no way she would pass it as at the time she swung about between the 80s and 90s continuously. The nurse raised this and they delayed it by 4 days and by then the improvement was massive and she passed it.

I would trust your instincts and if they talk about doing it again and you don't think she is ready let them know. A few days of her having good Sats will also make you feel more confident bringing her home.

I am sure she will pass the next study and you will get to bring her home.

Take care

 

[Sam9kids]

Awwww hun you know my story and ye a week does make a lot of difference.

I always found that they push the babies really hard. Jenson was worse than Sophie and ended up back in an incubator in hdu when he was desatting, back on oxygen and on antibs. It was horrid. Straight away they wanted to feed him on bottles again. I couldnt understand it as him holding his breath during feeds had caused it!

I refused to let him have bottles until i thought he had settled a bit!

If you are not comfortable with things, then say something hun

You know where i am xxxxxx

 

[embojet]

Awww, sorry to hear that. It does sound like it was a bit rushed to me. However, just to let you know Molly came home on oxygen and it was not a big deal at all, she was fine, and if Sophie needs it, it's better to have her at home than in hospital if you get the chance

 

[AP]

A week more can make all the difference between going home without oxygen or having oxygen for months. If you dont feel up to it, tell them. I did. Looking back we think we could have managed oxygen, but at that point I think we were at the end of our tether and wanted the ordeal to be over with.

I swear your texts made me want to cry, I could feel so much frustration and hurt in your texts. I'm glad Dona phoned you, I was gonna phone but I got stuck in that pissing rain practically jogging with buggy to catch a bus!

But like I said, wee Jill told me they only consider home with oxygen if they think you can handle it - so its a compliment in some odd way!

 

[Bec L]

You've both had to go through so much and you've both been doing so well.

I know the other girls on here have a lot more experience & advice than me on the subject, but even in the short time Poppy was in SCBU we had so many frustrating situations that I have a vague idea of how you've been feeling.

I hope that little Sophie is home soon, but not until you are all ready