Premature baby breathing problems, please help

[Exhaustedmummy1811]

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 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 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

I think you need to take her back to a and e and push for some answers. I would not feel happy having a baby like that at home. How can you relax? Sleep? You need them to do proper tests and discharge you with some answers and an apnea monitor. Go back and tell them she keeps doing it. Also get them to show you how to do proper baby cpr.

Ps who cares if people think you are overreacting - this is your baby’s life.

You need to be confident in the paediatrician's diagnosis, but you also need to make sure you don't become overly anxious as a result of what you're going through. I say this as someone who's baby did suffer breathing problems, had to be blue lighted in, on oxygen, in HDU, etc. I became irrationally anxious, convinced she wasn't breathing properly when she was, checking resp rate, pulse, etc., dreading being in my own with her, etc. Share all your concerns about baby's health with HV and GP or hospital, push for answers if you don't agree with what you're told, but also keep an eye on your own behaviours too to endure anxiety doesn't manifest itself into a bigger problem for you.

If you're concerned tonight, 999/A&E. Otherwise GP in the morning and they can do a referral. Things may have changed since she was last seen

And plug - right there you have shown all the worst attitudes towards women and mothers! How ridiculous you are talking about the op’s anxiety when her baby is still having ongoing breathing problems. So many women are put down and made to doubt themselves like this. If her baby wasn’t still having symptoms she wouldn’t be half as worried.
Op should be going to hospital now and demanding answers instead she’s sat at home worried senseless and worrying not about her baby (in all) but whether someone might judge her as overreacting.
Men do not doubt themselves like this.
If baby is still having symptoms - get her back to hospital.
If she’s not and you’ve reassurance it’ll never happen again then you can be reassured.

I had a premie like yours @Exhaustedmummy1811 and he had breathing problems very similar to your LO I kept being dismissed by the hospital etc but when we had to blue light him at 8 weeks I refused to leave and demanded the consultant attend - I was popular - thankfully he agreed there were bigger issues and he was admitted- we are still waiting for a conclusive diagnosis but sleep apnea has been diagnosed. He's 18 months now and has improved over time. I agree with others posters you know what your baby is like - you do know best - go back to the hospital or see the GP tomorrow- as hard as it is stay strong you're doing the best for your baby. Feel free to PM me - best of luck x

I also had to refuse to leave until my baby’s breathing problems were diagnosed. When they were she needed an operation. I got dismissed so many times before that as ‘being anxious’. I think it’s pretty appropriate to worry when your baby can’t or doesn’t breathe!

Please follow your gut and go back to hospital, be strong if you can and tell them she is sleepy, hard to feed and breath holding. If you are really concerned please just dial 999. Babies breathing patterns are different to children’s and adults but this does not sound right. Babies do not ‘breath hold’ to be point of being floppy as a normal behaviour, Dr will say this happens in his experience of babies on NICU but they are being monitored in hospital not at home!

Big hugs. I have twins who ere born at 35w at 2 weeks old and a week after we got home one had a non responsive episode in her car seat and ended up in A&E. They did give me open access to paeds to bring her back in if needed and I did twice. They investigated her heart murmur which I knew she had and discovered a mild PDA which was monitored and closed by itself. She never did have anymore episodes and is now a happy healthy 5 year old. I'd go back if you are worried.

"Has anyone been through anything similar?"

Yes.
Does her chest move in and out quite significantly when she is trying to breathe? Does she have stridor (noisy breathing)? Does she have a sort of barking sound when she cries?

If the answer is yes to all of those take her back to hospital and ask her to be seen by ENT asap.

Does your baby have any other symptoms Op? My ds did this as an anaphylactic reaction to milk. Usually when feeding or shortly afterwards.

I agree with previous posters. Go back go back go back, if you are not happy.