Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Flip

1 2 3

Original poster

Please help, terrified of losing my baby

55 replies

Exhaustedmummy1811 · 29/04/2019 12:55

I have posted in health too but I'm posting for traffic as so scared right now.

Saturday night my 7 week old premature baby (born 36 weeks) was blue lighted to hospital after she stopped breathing. She just went limp and blue in my arms.

On the way to hospital she was on constant oxygen, she had a few more attacks throughout the night. They did a blood test which took an hour to get as she is so small and they couldn't get enough out. She was left with 8 needle marks from all the attempts and we were both distraught by the end of it. She was on a constant monitor checking her heart rate and how much oxygen flow was getting into her system, according to this everything was perfect. The blood results came back normal as did the ecg that they did. She had also gained a good amount of weight since her last weigh in.

The pead doctor saw her have an episode but said for a premature baby its perfectly normal and wrote in her notes that he was diagnosing 'breath holding' and we were discharged at lunch the next day.

My problem is I feel like I have bought a completely different baby home. She is having upto 20 of the episodes a day, we were told to just blow in her face or take her outside when she does it. We have started giving her a dummy as this reminds her to breathe. But she doesn't really cry now where she used to at every nappy change before now she just kind of whinges like she can't cry. She used to lay in my arms and just look at me now she just looks like she is struggling to breath. She used to snuggle into my neck when we had a cuddle and try and suck my cheek to tell me she was hungry she doesn't do these anymore. She used to make out she was always hungry when she was awake eating her hands and rooting around now we have to try for upto a minute to get a bottle in her mouth. She just seems completely different to how she was just a few days ago.

I can't relax anymore or enjoy her as I'm constantly worrying about her, I've got my health visitor coming out tomorrow so will speak to him. But I think I'm going to take her to my gp Wednesday but I think she will just tell me to take her to a an e if I'm worried but they have already told me it's perfectly normal an I feel they will think I'm over reacting.

Has anyone been through anything similar? Please reassure me things will get better, I'm so scared of losing my little girl. Sorry for the long post

OP posts:

spicypickle · 29/04/2019 12:56

I have no advice at all but sending hugs to you as that sounds so awful to experience x

Orangeday · 29/04/2019 13:01

My big girl was a premie and would forget to breathe. It was terrifying and I sympathise. However this change of behaviour you describe would really worry me and I wouldn’t let it lie. Trust your instinct and push for answers. I would keep going back to Gp if I was not satisfied with the examination at A&E or if you have further worries. Remember to look after yourself too. Good luck.

Fi1982 · 29/04/2019 13:01

Get yourself to the Dr ASAP and get a hospital referral, or go to A&E yourself if you can’t do that. Doctors won’t take chances with babies that are so young, and they certainly won’t dismiss your fears if they are a good doctor (not of all them are, so make sure you see one who is thorough and makes you feel satisfied with their diagnosis).

If your daughter is now having 20+ episodes a day, then her condition has worsened and you need to see someone immediately. Don’t be fobbed off.

Lots of love, sending hugs and thoughts to you x

Treaclesweet · 29/04/2019 13:02

I didn't want to read and run but I don't have any real advice. That sounds so horrible I really feel for you. Doctors can be horrendously dismissive. I hope your GP is better, or have you spoken to your health visitor?

Bobbindobbin · 29/04/2019 13:02

Was she in nicu? Could you call the ward got advise?

kandykane77 · 29/04/2019 13:03

Honestly, you know your baby. I would actually go back to A&E and tell them what you’ve just told us about how differently she is behaving. It’s always better to be safe than sorry with babies, they can’t tell us how they feel with words so we have to speak for them. I’ve been to hospital a few times with my boy and never been made to feel like I was over reacting. Hope she improves soon but honestly don’t hesitate to go back xx

FloatOn · 29/04/2019 13:04

I'm sorry I have no advice but sending you virtual support as this sounds awful.
However only you know your baby and if you are concerned I would pester the GP/ Health visitor etc until you get some answers. They only see a snap shot of issues, you see it 24hrs a day.

Take a video of the episodes to show to them, so they can see what the problem is.

eurochick · 29/04/2019 13:04

You need to go back to hospital. Trust your instincts.

ClareSleepy · 29/04/2019 13:05

I'm sorry you're going through this. To be honest I'd take her to A&E now to get a second opinion and get her checked again. Trust your instincts. Tell the doctors everything you've said here. I wouldn't wait until tomorrow just because I'd be so anxious and on edge. There's no point waiting with babies this little and if nothing else you'll get some reassurance. Good luck I'm sure like the doctors have said she is fine, but just get her thoroughly checked again and let them see the change in her.

ShambolicUsername · 29/04/2019 13:05

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Teddybear45 · 29/04/2019 13:06

If she’s gaining weight that’s a positive sign. Breatholding is common amongst premies and often you just have to stay awake as they sleep, and pinch their ears or turn dummies to remind them. It’s really hard and takes it out of you. Have they tested for reflux? That could cause some of the behavioural changes you mentioned.

spicypickle · 29/04/2019 13:07

@ShambolicUsername wrong thread

Penguinpandarabbit · 29/04/2019 13:08

I would take her to A&E or phone 111, I have no medical qualifications but that doesn't sound right to me. My baby was born at 36 weeks nothing like this. I think she will be fine with proper care but would make absolutely certain they are right she is fine to be home.

Soubriquet · 29/04/2019 13:09

I would go back to hospital too

If she’s changed so much that you feel something is wrong, then trust your instincts

ThePerturbedPenguin · 29/04/2019 13:09

Yes you need to go back

Planetian · 29/04/2019 13:09

Sadly OP I’ve found since DD1 was born that a lot of the time you really have to push and push for doctors to listen. I used to have blind faith that they were the professionals and they knew what they were doing but they are just human and often overstretched with work, so if you have concerns you have to advocate loudly for your child.

I’d bring her back and not leave until you’re satisfied they’ve taken your concerns seriously.

So sorry this is happening, it sounds so scary. Best wishes with your little girl

FannyWork · 29/04/2019 13:11

Yes this happened to a friend of mine! It was so traumatic at the time but her little boy did get through it and is a totally healthy little guy now. It was awful for his parents, they had to watch him 24/7. Have you got a monitor for her breath while she is sleeping? The hospital should be able to give you one, this might help you get more sleep.

I actually have a completely new unused angelcare monitor I’d have no objection posting to you if you thought it might help, it has the sensor may for if they stop breathing. I used Angelcare for my first DS and really rated it. I bought two for my twins but they barely ever slept so I never needed it! Let me know if that would be any help to you.

MustardScreams · 29/04/2019 13:11

Take her back to hospital today. You know she’s changed and it’s not right, you need to get her looked at again.

HolyMilkBoobiesBatman · 29/04/2019 13:13

Sending hugs OP, my first was a 33weeker. Constant worry for a long time but through the other side now.
You’re doing wonderfully and likely baby is just tired out today after a hard weekend BUT I echo other posters and agree you should go to A and E if you’re worried, you know your baby best and ultimately you’re better off seeking reassurance as many times as you need it.

Breath holding is a common preemie thing which they do grow out of eventually but it’s awful when you’re in the midst of it. Have you heard of the Owlet monitor? It’s like a sock that baby wears and will alert you if they stop breathing. It might be worth looking at so you have peace of mind at home.

Fi1982 · 29/04/2019 13:17

Also, after you’ve been to A&E/doctor again (please do go), you may wish to invest in either a movement monitor for under the cot mattress (Angelcare as mentioned by a PP above, or Motorola do a good one), or one of these Owlet socks:

owletbabycare.co.uk/?gclid=EAIaIQobChMI8fqXxqP14QIVprXtCh0TGg2EEAAYASAAEgJIxPD_BwE

Please do get her checked out again, no decent health professional will judge you for being vigilant with your baby!

HolyMilkBoobiesBatman · 29/04/2019 13:17

Oh also, has the possibility of silent reflux been ruled out? That causes all the discomfort of reflux but without as many sicky episodes. DC1 always looked to be struggling to breathe during an episode l.

Highfivemum · 29/04/2019 13:20

Return to the hospital. Mums know best and if she is worse then she was and having more episodes you need to tell them. Even for your peace of mind
I wish you well x

Cryalot2 · 29/04/2019 13:23

Poor you . If you are worried take your baby straight to a & e . Hopefully all will be well. The weight gain is a very positive thing.
Many many years ago my first born was over due and big , but spent a few weeks in special care , so my thoughts are with you.
In our case he did not feed. He is a strapping adult now but still causing worry.
Hoping things improve soon, and be kind to yourself as you are going through much.

Kolo · 29/04/2019 13:24

Trust your instincts. They are based on intense experience with your new baby that only you (and oh, possibly) have. You know your baby is not right, and you should get medical help.

I’d go back to a&e or my GP and demand a referral to a paed consultant.

recklessgran · 29/04/2019 13:27

Oh bless your heart OP. Please trust yourself and get your baby seen today. I would take her back to A&E if she were mine. Please trust your instincts - YOU are the one who knows your DD best. If I were you I would want her readmitted so the responsibility for her survival isn't all mine! I'm not saying that lightly OP and really feel for you. Do you have anyone who can support you in this? I hope it all works out OP.

Flip

1 2 3