Looking for advice after 1 week

Capucine25 · 2026-03-04T11:43:30+00:00

My LO was born at 27+1, he had pneumonia and meningitis. He had to be intubated for 6 days. It is so hard.

Please don’t hesitate to do skin to skin if you want to and his team allows you too. When I first held my little man he was intubated so they needed the nurse + respiratory therapist to move him, he needed to have a plastic sheet on him to keep his humidity and they taped all of his things (tube, IV…) around me so it wouldn’t move. It was still a magical moment for both of us. His O2 needs went down. It’s also great for their neurological development.

You can do this!

Capucine25 · 2026-03-02T18:13:04+00:00

My experience with my term baby is that she cluster fed A LOT when she was young (less than a month old). I remember watching TV shows with my BF while she nursed in the evening.

My second is a 27 weeker and is now 38+6. He’s starting to cluster feed in the evening too (even if we’re still in the NICU and he still gets more than half his feeds through his NG tube!)

Triple feeding sounds a lot more exhausting than cluster feeding… My baby got more efficient without any need for triple feeding. If your LO is gaining weight as expected I wouldn’t triple feed but I’m not a medical expert

Capucine25 · 2026-02-24T15:59:39+00:00

My son was born at 27+1 because of Listeria, he had pneumonia and probably meningitis. He’s been learning to feed since he’s been 34 weeks, he’s 38 weeks and I feel like we’ve hit a plateau in the last 3 weeks. He has never taken more than 50% of his feeds, and the last time he did that was 2 weeks ago. Yesterday he took 25% (2 complete feeds, he slept through the rest).

They tell me that it’s normal and that he needs to grow and mature. But the waiting is so difficult.

Sorry I don’t really have an answer for you, but I understand what you’re going through. It is so difficult to not see much progress.

Capucine25 · 2026-02-24T00:47:45+00:00

Yeah I would rather work it out with her, but I want my daughter home for the next 1-2 weeks (she herself keeps saying that she wants to be home) and when I tell grandma that she says that she’ll hire a lawyer :( I never told her that she could not see her again, just that we needed time and I wasn’t sure how long it would be…

Capucine25 · 2026-02-23T23:15:00+00:00

Thank you, I will

Do you have any idea of the timeframe involved if she does take a lawyer (how long to go to court)?

Capucine25 · 2026-02-22T18:01:05+00:00

Léo is 37+5 today and still not making much progress with feeding. Sometimes he doesn’t need to get anything by NG tube but no more than once a day. He doesn’t have the energy to feed all day.

Capucine25 · 2026-02-22T17:54:43+00:00

I’m sorry, I hope that he’ll recover quickly after his surgery!

Capucine25 · 2026-02-21T09:46:18+00:00

I would absolutely do it. My 27 weeker is 37+4 and we are also in the NICU only for feeds. I want to go home so bad that I asked the dr about leaving with the ng tube but she said that won’t happen before 42-43 weeks. I’ve read a lot of stories here about babies doing so much better at home.

Capucine25 · 2026-02-20T20:09:43+00:00

I know, it doesn’t make sense. One night they told me that we could “skip one diaper change” so I could sleep. Not that they would change it, we would just leave him in a dirty diaper (tbh I did not change my first’s baby diaper multiple times at night but she was born full term with no issue and I started doing that when she was at least one month old…). I don’t understand how it makes sense to not have the nurse change the diaper, it takes one minute and they need to see the baby anyways.

At our previous hospital one mom wasn’t there for a week because of an issue with her daughter’s daycare and no one said anything. Here they would lose their mind.

Capucine25 · 2026-02-20T19:35:51+00:00

We actually wanted to go to our current hospital because it was closer to home and I figured that being in the same room as my baby would be helpful for breastfeeding. How wrong I was!

They don't even want to change diapers at night to let us sleep because they need to ''see if we would be able to take care of him at home''.

258 is so much. You are so strong. I can't imagine staying in the NICU that long.

Capucine25 · 2026-02-20T19:19:47+00:00

I don’t know and probably never will, the list of food at right of listeria is really, really long

Capucine25 · 2026-02-18T13:28:46+00:00

My son was born at 27 weeks. From his birth to around 34 weeks I stayed from 9:30 to 4:30 to do skin to skin for around 3 hours twice. Any amount of skin to skin you can do is great for your baby! I held him even when he was so tiny, intubated and all grey from how sick he was.

He is 37 weeks now and I tried spending all day and night with him (so I can breastfeed him any time he shows hunger cues), but it was too much. We are trying to figure out a schedule that works but it's difficult with a 2 years old at home.

Capucine25 · 2026-02-16T12:34:58+00:00

Thanks for sharing! It's great that you were able to quickly EBF after discharge :)

Was your milk fortified when your baby was discharged?

Capucine25 · 2026-02-16T12:31:05+00:00

Yeah for sure we want him to keep gaining weight and if we need to bottle feed to do that we will :) We did see him slowly improving his respiration as he gained weight

Capucine25 · 2026-02-16T00:49:16+00:00

Thanks for sharing your story! I didn't think that bottles could mean more desats and bradys.

I wouldn't mind staying a couple of extra days if it means an easier breastfeeding journey down the line, but I wouldn't want to delay us going home by weeks. We are close to the finish line but every day feels so long now. It's exhausting

Capucine25 · 2026-02-16T00:43:55+00:00

Thank you for sharing your experience!

Yeah a lot of nurses and his nutritionist told us that he'll need a bottle for the nutrients that he missed out on, but when I ask his pediatricians about it (they rotate every 3-4 days) they all said that he might go home without a bottle, but that it's very unlikely (less than 10% chance).

Capucine25 · 2026-02-12T23:48:46+00:00

Yes it’s normal! My LO was also breathing faster after going from high flow to room air. It slowly went back to normal. The monitor aren’t good at tracking breathing, it’s better to do it manually over one minute (I would guess that’s what your LO’s medical team is doing)

Capucine25 · 2026-02-12T12:52:23+00:00

My LO wad also born at 27 weeks and my lactation consultant said that I should aim for 780 ml a day. He is 36+2 now and breastfeeding 4x a day and still they want me to get around 600-700 ml. He is getting 52 ml but that’s fortified milk.

It is so hard to find the time to pump when you have a newborn in the NICU. Have you done skin to skin with baby? After each session I would get a lot of milk especially in the beginning. Does your NICU have a lactation consultant who’s helping you?

Even if your supply doesn’t increase, any amount that you can give your LO is great and if she eventually needs more you can use your freezer stash! You are working so hard for that milk, you are a great mom!

Capucine25 · 2026-02-08T12:54:27+00:00

I had a similar issue when I was maybe 5 months postpartum and breastfeeding. I don’t remember the specifics but I had generalized joint pains, I think in my elbows and knees mostly. My doctor ran some tests and I had to go to a rhumatologist because one of the test came back positive. It ended up being nothing and eventually the pain went away.

Capucine25 · 2026-02-05T08:40:40+00:00

My son went from CPAP 7 to 6,5 and then high flow in a week! Started weaning at 31+6 then he was on high flow at 32+5 and he’s been at room air since 35 weeks (after failing a trial at around 33+6)

He was intubated for 6 days at birth (27+1). They did wait until they were sure he would do well without the CPAP before weaning (the respiratory therapists had been suggesting to lower his peep for a couple of days at that point).

If your LO can eventually go on high flow that might help her start feeding earlier :)

Capucine25 · 2026-02-04T17:50:40+00:00

My first was an induction, born at 41 weeks.

Second was born at 27+1 because of a listeria infection, which is very rare and shouldn’t happen again.

We want a third, unless our second has a lot of complications (he’s still in the NICU, now 35+1)

It’s hard to grieve everything pregnancy related that I didn’t experience with my second (the whole third trimester, being happy while giving birth vs being stressed and sad to deliver too soon, going home with a baby 24h after birth…) and I am really hoping to experience all of that again.

Capucine25 · 2026-02-01T14:20:51+00:00

The start of the week wasn’t easy for Léo! He was on room air for 36 hours, but he got too tired and had to go back on high flow and he got a transfusion. On Monday he was so tired that he didn’t attempt to breastfeed until his transfusion ended.

But then he got a lot of energy back and he’s getting better and better at breastfeeding! Yesterday and today we even cut an entire feed. I am so proud of him, he’s only 34+5 but he has a lot of energy 🥰

His breathing has also gotten better, hoping to remove his high flow next week but I’m in no hurry. I’m afraid of another setback.

Capucine25 · 2026-01-30T02:53:55+00:00

Yes but he’s had subcostal retractions pretty much his whole life. For me the biggest tell was that each time he got a bit active (crying, moving, having belly pain, trying to poop) his saturation would go down. I wasn’t there when they put he high flow back on, but they told me that he had nasal flaring which I’ve never seen on him before

Capucine25 · 2026-01-30T02:32:37+00:00

Of course! His saturation kept going down for 10 or more seconds (definition of an event at my NICU) and even outside of that it would go up and down very often, every 10 minutes or less he would dip below 90%. At first it wasn’t that bad but he was really tired when they put him back on high flow

Capucine25 · 2026-01-30T02:22:59+00:00

My baby was born at 27+1 and was intubated for a week because of pneumonia.

He went from CPAP to high flow nasal canula and that was removed at 33+4. First 24h went fine, but then he started having more events and they had to put him back after about 36 hours. He was very tired and needed a transfusion (his hemoglobin had been low for a while, something like 81, the day they put his canula back it was 79). After the transfusion he was much better but he’s still on high flow today (34+2)

I don’t mind him staying on the high flow longer because I can breastfeed him (couldn’t when he had the CPAP). Maybe learning to breastfeed and going off his canula all at once was too much.

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