Full term baby in NICU - tube feeding/recovery

[Bramble29]

Hello, first time posting, my beautiful girl was born at 38 weeks by EMSC. We were told she had respiratory issues with her lungs realising she had been born, alongside a possible infection. We have been in the NICU for 13 days now and she is starting to slowly come off oxygen and take a bottle a little but is tube fed mostly.

Does anyone have experience of a baby changing from tube to bottle and how long it takes? She seems to take a full one occasionally and nothing at others.

The Drs have also started looking into her being "floppy and tired" anyone got experience of this for children who have gone through a rough start? Could it pass in time or is there something more underlying.

I'm scared and worried all the time,I love her so much but the Drs have said that we aren't where they thought we would be.

My ds was tube fed for a long time because of an illness he had. In the end we went straight from tube to weaning (for reasons to do with my ds’s illness not because of difficulty feeding). But the advice at the time was to just keep trying the bottle, even if it’s not much, to keep the sucking reflex going. My ds lost his suck reflex in the end, but that didn’t cause any long term problems once he was on solid food.

Keep pushing for tests and answers for your dd if you have worries. Sending best wishes for you and your dd. Hope everything gets better soon.

Thank you for replying, it feels like a very lonely time atm.

Did you go home with tube feeding from hospital? They have said that may be an option further down the line.

They have done a brain scan, possibly waiting an MRI and have sent away genetic testing. Hopefully we get some answers for our wee lady.

Yes we came home with tube feeding. It became normal to us, eventually.

I remember it being a very scary time. Particularly when they didn’t know what the problem was and were doing lots of tests like with your dd. With my ds they knew something was definitely wrong from the start, but had to do genetic testing to actually find out what it was. My ds was full term and the drs used to come and look at my ds with a worried and confused look on their faces and it all scared me so much. My ds is a teenager now and doing well! Really hope things improve.

Hi im going true the exact same at the min ...dd born at 37 weeks whit rds 24 days later still thear ...have you been given any answers

Thay have tested for many things but its been negative. Thay also thride weaning off the vaperterm fastflow and eventually she was put on the slow flow but unfortunately had to be put back on fast flow......really is the hardest thing in my life to have to go true ....all the doctors are saying is give baby time ....3 and half weeks later and we are no further on

You sound so similar to ourselves, we are still here and they have no idea what's going on. Sent genetics testing away as well as urine sample for metabolic issues, a basic brain scan was fine but awaiting MRI or CT scan at a later date if we don't get answers. They are talking about sending us home with an NG tube and oxogen, I have no idea how we will manage that, and not having answers. Has your wee one started feeding?

We were initially told to just give her time to recover but now they think something else underlying.

Thay have stared feeding a few times in a bottle and den stoped as thy think she's working two hard whit the vaperterm..just today thay decided that she can handle one bottle and rest Ng tube. Thay also have sent for testing whit the metabolic team from great ormond street but thy said as shes feeding and blood gasses have gotten better thay had no concerns but to get back in touch if the problem continues...can I ask os your baby one slow flow or fast flow

We had some test coke back this morning as in cystic fibrosis and was negative.

Doctors have said shes making progress but just not as fast as thay would like ...I feel each time we get good news and get our hopes up wer knocked strate back down. She's 4 weeks on Monday and still no answers to what it could be or what caused it

She is using a standard test rather than the fast flow one, she tried the faster flow but it didn't really make a difference. She tries a bottle but normally gets tired quickly so doesn't finish it and is topped up through the NG tube.

Yes, that's exactly how we feel, that we are told to be patient but also told that she isn't making progress and they are looking into it. It's a constant rollercoaster.

Hi any updates on your baby

Wer still awaiting the genetic results she was put on cpap this morning as shes still breathing fast

I just wanted to say our beautiful DD was also a full term baby who ended in NICU because her shoulder got stuck so I know exactly how horrific that experience is. The pain and fear for your child is awful and it is such a lonely time. Ours was also initially tube fed.

I don't have any advice because our start sounds like a different cause (oxygen depravation and brain damage in our case) but I just wanted to send you a hug because I remember the horror of our early days.

But I also wanted to give you some hope because we went from tube feeding to breastfeeding and from flat line brain activity to normal brain activity. It's been a very very hard two and a half years but we've come out the other side in a much much brighter place so don't give up on your little person xx

DS1 was born at 36 weeks due to pre eclampsia and ended up in NICU/SCBU until his due date. He didn’t have breathing problems but was tube fed as couldn’t suck and swallow - the small amount from bottle rest through tube - until he could take enough from bottle. At the time they though he just hadn’t developed the suck and swallow reflex. He does have mild dyspraxia and slight dyslexia - the problem swallowing may have been down to that. He is a lively healthy 6 ft now!

Hi Ladies.

Just wanted to see how your babies are getting on.
I have birth at 36weeks and baby picked up strep B on the way out and doctors think that it might have causes meningitis which he was treated for with antibiotics for 2 weeks. It's now 5 weeks since being in nicu and baby is still not feeding on its own.

Really worried and depressed as all other babies are doing well and going home. Any ideas?

Hello, sorry for not replying to previouse messeges. So we were discharged and our wee girl was given a rare Genetic diagnosis however it is very rare, and was mostly noted due to her low muscle tone combined with feeding issues. However we went home with an NG Tube and oxogen and were told it could be months before she is off them and it was it a couple of weeks at most. Our little girl will have challenges in life but she is beating any expectation set for her already.

I hope your ok please feel free to messege me, the feeling in the NICU of not knowing was scary and I felt as if we lived in a nightmare and this was some kind of joke. I felt annoyed that other people just got to go home with their babies and my wee girl wasn't able to, we have felt amazing since coming home but I want you to know it's ok to feel whatever you need to feel just now.