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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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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:

Original poster

Exhaustedmummy1811 · 29/04/2019 13:29

Thank you everyone I will definitely being seeking medical advice as there is just a feeling in my stomach something isn't right. Some of the stories here are very reassuring and I can't thank you enough. My daughter is my 5th child and I have never experienced anything like this before, it's so scary. @fannywork would you mind messaging me please and let me know how much you would like for the angel care monitor, I think this would really help my anxiety, thank you so much

OP posts:

Original poster

Exhaustedmummy1811 · 29/04/2019 13:30

I'm off to the hospital in half an hour to visit my mum so think I'll nip into the a an e department at the same time

OP posts:

Fi1982 · 29/04/2019 13:36

Best of luck, hope it goes ok. Be persistent if you have to be - your baby is very young and things can escalate quickly in newborns (not to scare you, just to encourage you to speak up) x

SusieOwl4 · 29/04/2019 13:38

I agree you need reassurance and possibly a second opinion. Having had a prem baby I know its stressful , but you also must trust your instincts.

Pythonesque · 29/04/2019 13:39

That sounds a really good plan. Agree that mother's instinct is really important in these situations.

36 weeks is only a little prem; if your baby had just a few of these episodes and then things settled again, the explanation could be reasonable. Since it's happening more and with all the other behavioural change, more thought is required.

I hope you can get some more help and review; I suspect actual diagnosis and understanding of what is happening may take some time. Best wishes.

SabbyNabs · 29/04/2019 13:40

We had the Tomy under mattress monitors and respisense nappy monitors. They gave me so much reassurance. I don't have them anymore, but they were well worth it imo. www.respisense.com/en/index.php

I hope you get some answers OP.

Springwalk · 29/04/2019 13:41

You have to take her back, and stay there until a consultant can absolutely confirm it is safe for her to be at home. You know she isn't the same, and you know something is wrong. You are not wasting anyone's time, take her back today.

Biggest hugs op, it must be agonising going through this with your little one. Please update and let us all know how she is doing.

Justaboy · 29/04/2019 13:46

Absolute excellent advice:) No messing with premature babies!

Sorry to say but sometimes you do have to agitate a bit to get things done in hospitals these days. Apoligies to any hard working rushed of their feet medical pro's who are on the board!

BananasAreTheSourceOfEvil · 29/04/2019 13:48

Id recommend ringing the NICU and asking them for their advice too/instead. Ive had three prems and I always found the NICU nurses to be invaluable, even after discharge. Go with your instincts

StoppinBy · 29/04/2019 13:56

My second was a breath holder, the first couple of times it scared the shit out of me but it was nothing what like you are describing. He would get upset about something and scream then while screaming he would just go silent and grey then pass out before coming round all by himself.

Insist on another opinion, then if you are still not happy insist on another. They cannot force you to leave the hospital and personally I would actually refuse to leave until I was happy that my baby was safe to go home even if it meant sitting in their emergency department and getting readmitted.

Wishing you all the best with getting the answers you need.

ittakes2 · 29/04/2019 14:16

I think my sister used to do this - if you are concerned I would pay privately to see a pediatric doctor to give you reassurance.

peachgreen · 29/04/2019 14:19

I'm really glad you're going back to A&E, OP. You know your baby best and such a dramatic change in behaviour doesn't sound right. It could just be a virus making her a bit lethargic but it's absolutely the right thing to do to go and get it checked.

TixieLix · 29/04/2019 14:25

The fact that this is your 5th child shows you are not an over anxious first time parent OP. You know this isn't normal for your child so insist on a second opinion.

@fannywork, very kind of you to offer your monitor. So lovely to see people on this forum pull together and offer support.

I hope all turns out ok for your DD OP.

museumum · 29/04/2019 14:27

Doctors can only judge the snapshot they see of the baby in front of them, you, however, have been with your baby throughout and you have observed that your baby has changed in behaviours so you really do need to go there and tell them about this change.
I'm sorry I can't help as to who to see but I'd think that you'd have some kind of ongoing care from nicu or similar rather than a&e?

CPParenttoDD1234 · 29/04/2019 14:29

Please take her to A&E. I’m a children’s nurse and would be really worried if this was any of the children I care for.

Hecketyheck · 29/04/2019 14:54

Please go back, and do tell them this is your 5th child - it's not like you don't know what you're doing! Be firm, be insistent, don't let them fob you off.

So sorry you are going through this.

MrsMozartMkII · 29/04/2019 15:31

I hope all goes well with her.

SnowyAlpsandPeaks · 29/04/2019 16:49

Hope everything turns out okay OP, what a scary situation.

Goldmandra · 29/04/2019 16:59

If you have a children's hospital within striking distance, I would consider going to their A&E. This will mean your DD is seen by a paediatrician and everyone will just be better skilled at assessing small babies.

Ceebs85 · 29/04/2019 18:46

Hope everything is OK OP. Definitely right to get checked over again if you've noticed behavioural changes since admission!

ThePerturbedPenguin · 30/04/2019 08:32

How is everything?

Mammylamb · 30/04/2019 08:37

Ask to see another doctor at the practice. Or take baby to a&e. MAke sure baby is seen tpday, even if you have to make a big fuss

WellThisIsShit · 30/04/2019 08:41

Hope everything is ok OP

aurynne · 30/04/2019 08:46

Midwife here. I will never emphasise this enough: TRUST YOUR INSTINCTS AND NEVER, EVER LET ANYONE PUT YOU OFF WHEN YOU FEEL THERE IS SOMETHING WRONG WITH YOUR BABY.

Camp at the hospital's door if you need to.

Your baby was only 1 week early. The change of behaviour you're describing and the frequent episodes of apnoea are NOT normal in any form. Keep pushing to have your baby admitted and properly monitored and assessed.

And please keep coming back and letting us know how it goes.

My heart is with you.

MRex · 30/04/2019 08:52

How did you get on at the hospital yesterday OP? I hope you got some more help?

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