My baby forgets to breath

dg93 · 2022-02-10T17:44:46+00:00

My baby (6 days old) is currently in intensive care, at the start of the week she was on a ventilator unable to breath for herself. She's now off all that, but still has low flow (?) oxygen as she forgets to breath when she's eating. The doctors aren't really telling me anything and I've asked to speak to them but they haven't been out yet, it's been hours. Has your baby had the same issue before ? What was the outcome and how long were you in intensive care? I'm desperate to take her home when she's well enough. Apparently she's on 0.9 ml oxygen but her reading on the screen is usually 97-100, but when she's eating it's 88-93 ish. When feeding her I've started pulling the bottle out of her mouth every few sips, then once I hear her breath I let her take a few more sips. That seems to be working but the nurses here don't do that, they just feed and then burp her. Any advice welcome! X

Mostlyjustrunning · 10/02/2022 21:17

I’m sorry I have no advice but couldn’t just read and not reply

Littleducks · 10/02/2022 21:24

Ask for a referral to speech and language therapy for a feeding assessment

What you are doing is called external pacing when feeding and sounds sensible (though obv give proper advice as she needs to be seen)

Duracellbunnywannabe · 10/02/2022 21:27

Bottle feed babies should be being paced fed as a matter of course.

caringcarer · 10/02/2022 23:32

It all sounds very worrying for you but good idea to feed a bit then check she is breathing before feeding a bit more. Is she your first baby?

nocoolnamesleft · 11/02/2022 01:22

If she was on a ventilator at the start of the week, and is now already bottle feeding, it sounds like she's made some great progress. Hang on in there.

Piggyk2 · 11/02/2022 05:02

Can you ask the nurses OP? While you wait for the Dr update

shangelawasrobbed · 11/02/2022 05:13

I have no experience of exactly what you and your baby are going through, but my little one was born early at 34 weeks and spent some time in the NICU. The doctors and nurses explained to us that babies need to learn to coordinate "suck, swallow, breathe" and that this can take some time for premature or sick babies. Have you discussed your worries with the medical staff? They might be able to reassure you or explain how they hope to resolve the issue. Sending you and your little one lots of love and I hope you get home soon xxxx

shangelawasrobbed · 11/02/2022 05:15

And just to echo what a PP said, it sounds like she is doing really well to have come off the ventilator! You must have a little warrior on your hands xxxx

Original poster

dg93 · 11/02/2022 08:16

@Piggyk2

Can you ask the nurses OP? While you wait for the Dr update

I'm replying to all messages, thank you all!

So we have been asking the nurses for updates but they are either very limited on what they will say without a doctor telling them it's ok to do so, or when they are a bit unsure they start using big medical words that we generally don't understand.

She has done absolutely amazing, and honestly it took me by surprise this morning when I realised baby is 1 week old today, it feels like it's been weeks - so she has done so amazing, I didn't realise it was only a few days ago that she was on a ventilator!

I did get a call at 1am this morning (which scared the lift out of me!!) Asking permission to dress baby girl for the first time, which means she's also upgraded to a cot and not an incubator anymore, so she's another step forward, but still on oxygen.

Thank you all again x

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MargaretThursday · 11/02/2022 21:06

That's good news-hope she continues to improve.

Has she got reflux? I know two children who stopped breathing when feeding both turned out to have reflux.

MerlinsYFronts · 11/02/2022 21:21

My baby had similar when she was born - she never needed a ventilator but needed oxygen from about 23 hours old to 1 week old.

And just like your baby, when she was feeding it got a lot worse. She was tube fed for 2 and a half days and then moved onto bottle.

Anyway on day 7ish it was like something clicked in her and we were moved to a Children's ward for 48 hours and they weaned her off oxygen and once she had done a full night without a dramatic drop in her O2 levels and no oxygen she was discharged and no problems since.

Was your baby born by c-section by any chance?

It sounds like she’s doing really well, I know how worrying it is and the beeps of the machine when their oxygen drops is bloody awful! I’ve got everything crossed for you OP.

Original poster

dg93 · 12/02/2022 00:01

She was born by csection, yes! The beeping is starting to drive me crazy! I go to sleep hearing the beeping... and the other day I was drying my hair and all I could here was the beep beep beep sound.... 😞

I noticed a big difference today where she doesn't desat when feeding, which is the first time this has happened, but it's still happening when she cries/gets worked up. I even filmed her eating and the machine not going off so I could watch it back tonight at home - she's doing so amazingly

She's started throwing up her food since yesterday (she's only been getting milk since Wednesday) and from me googling tonight I think she might have reflux issues, so it's amazing that you brought that up. The doctors haven't said anything about that, they think it might be something to do with me eating spicy food a few nights ago, but it definitely sounds like reflux to me!

When I fed her slower today she didn't have as much of a problem, she only threw up once, rather than several times

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Fleur405 · 12/02/2022 00:45

Definitely ask for a speech therapist to assess her feeding. We eventually got one to see our son in the nicu and actually got to know her quite well over the following year or so. she said often by the time the nicu call them it’s because the situation has become quite bad and they would always be happy to do an early assessment. In our case the problem was the nurses force feeding him (we instructed by the consultant) despite my frequent complaints.

S3an · 12/01/2023 05:35

I’m familiar with this condition. I had it myself as a newborn. Breathing is a part of the autonomic nervous system(stuff we do without realizing) in humans—lack of brain development(as it’s a baby still), genetic predisposition disorders in the lungs, or lung defects may be the cause of it.

I was placed in a breathing chamber for months until I learned to breathe and was conditioned forcefully by my mother by shakes and gentle slaps to breathe. Fast forward 2 decades later, I’m still breathing and well. I don’t imagine it’ll persist unless it’s a lung defect or genetic disorder.

I would see a neurologist specializing in pulmonary-to-cerebral conditions.

marcopront · 12/01/2023 06:04

S3an · 12/01/2023 05:35

I’m familiar with this condition. I had it myself as a newborn. Breathing is a part of the autonomic nervous system(stuff we do without realizing) in humans—lack of brain development(as it’s a baby still), genetic predisposition disorders in the lungs, or lung defects may be the cause of it.

I was placed in a breathing chamber for months until I learned to breathe and was conditioned forcefully by my mother by shakes and gentle slaps to breathe. Fast forward 2 decades later, I’m still breathing and well. I don’t imagine it’ll persist unless it’s a lung defect or genetic disorder.

I would see a neurologist specializing in pulmonary-to-cerebral conditions.

Did you check the date before you posted?

The baby is 11 months old now.

rainbowandglitter · 12/01/2023 06:16

marcopront · 12/01/2023 06:04

Did you check the date before you posted?

The baby is 11 months old now.

Show quote history

This is happening on almost every thread now, people restarting really old threads and offering advice like it's just happened. I don't know why.

BoobsOnTheMoon · 12/01/2023 06:22

rainbowandglitter · 12/01/2023 06:16

This is happening on almost every thread now, people restarting really old threads and offering advice like it's just happened. I don't know why.

Show quote history

It's MN's 'helpful' feature that shows a list of algorithmically similar threads at the bottom of a thread, so people click on them and post on them. Even if they're ancient, or only tangentially related...

rainbowandglitter · 12/01/2023 06:30

BoobsOnTheMoon · 12/01/2023 06:22

It's MN's 'helpful' feature that shows a list of algorithmically similar threads at the bottom of a thread, so people click on them and post on them. Even if they're ancient, or only tangentially related...

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Oh really? I wondered what was happening. It's really unhelpful, people don't bother to look at the date then post advice which is a year out of date, wasting everyone's time.

BoobsOnTheMoon · 12/01/2023 06:42

rainbowandglitter · 12/01/2023 06:30

Oh really? I wondered what was happening. It's really unhelpful, people don't bother to look at the date then post advice which is a year out of date, wasting everyone's time.

Show quote history

Yeah this all got said to MNHQ in a thread in site stuff, but they insist that it's a useful feature. You can turn it off in your talk settings but obviously that only stops you seeing the suggested similar threads and doesn't solve the issue of people clicking through and posting on them!

NotAnotherBathBomb · 12/01/2023 07:27

S3an · 12/01/2023 05:35

I’m familiar with this condition. I had it myself as a newborn. Breathing is a part of the autonomic nervous system(stuff we do without realizing) in humans—lack of brain development(as it’s a baby still), genetic predisposition disorders in the lungs, or lung defects may be the cause of it.

I was placed in a breathing chamber for months until I learned to breathe and was conditioned forcefully by my mother by shakes and gentle slaps to breathe. Fast forward 2 decades later, I’m still breathing and well. I don’t imagine it’ll persist unless it’s a lung defect or genetic disorder.

I would see a neurologist specializing in pulmonary-to-cerebral conditions.

As this was posted in Feb 2022, the child would en nearly a year now.

@MNHQ what is with the zombies coming back up again?

Original poster

dg93 · 12/01/2023 08:59

You’re right she’s almost a year old now and came home around day 12 or 13 in nicu.

We found out at 8 weeks old a lot of the breathing concerns whilst she was eating is because she was allergic to cows milk! So as soon as she came off cows milk onto prescription formula she’s been amazing. She also has an EPI pen now for this allergy.

thanks for everyone that commented old and new, just been rereading it all as that time was such a blur ☺️

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