Hand hold? Newborn respiratory distress

[Paperyfish]

My baby was born Tuesday morning at 37 weeks. She wasn’t interested in feeding and kept bringing up frothy goo.
By tuesday lunch time she was in scbu because she went blue on put on cpap.
By midnight they’d transferred her to a high dependency unit in another bigger hospital to be intubated.
Now it’sWednesday evening she’s still got the tube. She’s had surfactant and antibiotics and morphine and a relaxant to stop her fighting the tube and dextrose and now they think she might need light therapy for jaundice too.
I want to express colostrum for her but am struggling. I haven’t slept much.
Has any one had experience of a baby with nrd? How did it go? How long did it take to resolve? Did you manage to get any milk for them? How the fuck do I cope? Please tell me what to do. I lost a baby 10 years ago. I can’t lose another.

I have no experience with this condition, but I did have an extremely poorly baby in special care and was told to prepare for the worst, she has sepsis and her apgar score was 1. She is now an extremely healthy 6 year old. Sending you a hand hold. It's terrifying and I can honestly say it's the worst experience of my life, so I truly feel for you.
I tried to express also but my milk never came in , I couldn't stay in the hospital and had to commute daily which didn't help! Just know I'm thinking of you, and I am praying for a speedy recovery ❤️

Op, how tough it sounds like your baby is being very well looked after.

I have experience of an early baby and expressing colostrum while they’re under the UV for several days.

Firstly (and something you don’t read on here enough) your body needs rest, food and hydration to be able to produce colostrum/milk. Are you able to get a good chunk of unbroken sleep somewhere? I know how noisy postnatal wards are. I know you won’t feel like eating and drinking but please do both as much as possible.

I know it’s controversial advice, but I would suggest giving baby some formula and giving yourself 12 hours off to recover, have a good sleep, a meal and get your fluids up. You don’t need to express colostrum for your milk to come in, and it sounds like that will happen in a day or two, so now is your chance to break the exhaustion/fruitless pumping cycle. Stress will certainly affect your production.

From tomorrow afternoon or so, start using a double hospital pump if they have one.

The above really worked for me, and we had a really good breastfeeding experience after that. You may need to pump for a week or two until baby puts on a bit of weight and feels energetic enough to feed for themselves, but don’t panic.

Congrats on your new arrival

[quote Paperyfish]**@blackcat86* @GrumpyHoonMain* thanks- I will start pumping when it starts looking like milk. Does the day they’re born count as day 0 or day 1? Just trying to think when my
Milk might come.
Was it Respiratory distress your newborn had?[/quote]
Day 1. My milk came in on Day 4, so 3 days exactly after he was born and the mw said that was late. Usually most women get it on Day 3.

My baby needed phototherapy for 2 days after he was born. They gave him formula whilst on that to flush out the jaundice quicker. I hand expressed both sides every 2 hours day and night into syringes. Would only get really titchy amounts to start with but was easily getting more by day 2-3 and i moved onto a pump. Rest as much as you can, make sure you’re eating and drinking plenty and express regularly as it will boost your supply. Really hope baby gets better soon x

Yes keep going with the hand expressing. Mine took 3-4 days to start with and then it began to flow more easily. When you start pumping do as little and often (like a newborn would in a sense).

She was a 28 weeker, in for 9 weeks total, although there were plenty of other issues to contend with as well. Do you have specific breastfeeding support where you are OP?

OP my baby was born 20th Feb and we ended up in the NICU far away from my home town with respiratory distress - basically she couldn't breathe when feeding. She went blue every time. My milk had already come in as we went there om day 3 and my milk came in day 2. But it was a very stressful experience and I truly felt like I couldn't cope at first. We were in 5 days and she had no milk for the first 12 hours so we were both beside outselves by the time they finally allowed her some milk through the NG tube. We are back home now. Just wanted to give you a hand hold really. Wishing you well x

Daughter was born at 35+5 by emergency c-section, , taken to SCBU several hours after birth with severe RD. She spent two weeks there, on oxygen, tube fed and also had light treatment for jaundice. The hospital lent me an electric pump that was far better than anything we could buy locally and I was able to provide colostrum then milk for her feeding tube, the staff on the SCBU ward organised it.

I was nervous bringing her home (PFB) but the sister on the ward made it clear that we were not taking home a sick baby, she was no more likely to be prone to chest infections or any other issues as a result of her RD.

She is now a teenager and I can count on the fingers of one hand the number of times she has seen the doctor (other than for the usual vaccinations/check-ups).

Thanks for everyone who has shared comments and experience. I feel physically sick I’m so worried about her.
I will start pumping tomorrow to see if I can get anything. They have pumps here.
I have started drinking a lot of fluids.
I have plenty of food and husband can bring stuff.
They’ve given me a private room so can get some sleep.
I just keep breaking down and sobbing. It’s so unfair. Why is she sick? I want my baby.

I know OP you will be very hormonal at the moment which make you very emotional over anything related to your baby. I remember sobbing in the maternity ward kitchen because I was told my baby had to go back under the UV!

Days 3/4/5 are the worst for the hormone crash as the adrenaline of the birth wears off.

Lots of hot (sugary if you like!) tea, keep talking to the medical staff and asking for whatever reassurance you need. I promise in a week you will feel much much better. Also please try to take fresh air breaks as maternity wards for days on end can be very claustrophobic

Not nRD but had to express for ds because I couldn't sit up to feed and he wasn't too well after traumatic birth.

Another mum on ward suggested heat helped express colostrum and it did for me. We were abroad and I'm not sure what they suggest here or if it's recommended or just something she found help her but worth asking about if using a warm flannel or heat bag whilst hand expressing is possible or could help.

It did me.

Handhold from me. DT2 was taken to nicu after birth with resp issues last year. Originally they said he would be on cpap, but in the end they just kept him on his front to clear fluid on his lungs.
I saw from your first post that you lost a child 10 years ago. This must be so scary for you (said as someone who has also lost a child/ been in nicu with next child). I’ve got everything crossed for you being home together soon. In the meantime, express colostrum as much as you can, and then pump when your milk comes in.

My baby grandson was born by c-section and then a SCBU crash team went into the theatre. It was absolutely terrifying. He is now two and very robust.

DS1 spent a week in NICU (born at 36 weeks), was on a ventilator for 3 days with feeding tube and had similar meds to your DD. After a couple of days he had light therapy for jaundice, this lasted a couple of days too. Originally had feeding tube in his mouth then moved to his nose as st the end of his stay I could get him out (with all wires attached to v fiddly!) but he wouldn't latch and they thought moving the tube to his nose might help (it didn't we ended up bottle feeding).
He moved from ventilator to a cpap by this point. After a week we spent a night on the ward and they gave him antibiotics and we came home, he's now 3 and hit 90th percentile and has always been ahead of his milestones and is extremely cuddly and close to us so please try not to worry. NICU staff were great at getting me involved in nappy changes straight away and holding him as soon as was possible.
They may look fragile but babies are very resilient and recover quickly. Try looking at photos of your baby while pumping I found that helped with supply coming in!

My first was born at 42 weeks, collapsed lung and nicu but only for 2 weeks. I had to give up breastfeeding. My milk came in but we couldn’t get him to take any. After he was discharged he would suffer with croup and he still gets shocking coughs when he’s ill. It’s suspected that was from the intubation.
It was a bloody awful time. I have such sympathy for you going through it.

He’s 9 and absolutely flipping brilliant now.

I hope you have both had a good night.

Thanks. She was quite stable over night. I woke up in a panic at 2 am and went to see her. Today they’re going to do a trial without the oxygen tube- just go back down to cpap. They also think she has infection now so want to do lumbar punch too. Hopefully she can cope with out tube.

That's good profess, infection is the reason my DS ended up in the same position, he started responding to antibiotics before they did his lumbar puncture though so wasn't a need in the end. I found it useful to ask the docs what his infection counter was each day to see if it had come down as the small progress in those numbers was such a positive to cling on to.
When they put my DS on cpap I think they had to increase his oxygen for a bit so don't be worried if they have to do that I think it's a bit of trial and error at first. Good luck!

How is your DD getting on @Paperyfish ?

She’s done well. She’s off oxygen now! She’s developed some digestive issues which may or may not be due to an infection they’ve detected and are treating. It might be something else. But her respitory issues are much better thanks for asking @flossiegrippiter

Yeah that's really great news.

That's great news well done little girl!

Brilliant news. If she's been on lots of antibiotics the digestive issues might be cmpa - more common when the gut has been affected by early heavy ABs use due to illness at birth. Make sure they're checking that out (I'm sure they will be)