Born at 26 weeks- constant bradys & reflux

[cleocarter]

My daughter was born on Aug 28th at exactly 26 weeks via emergency c-section after incompetent cervix & PPROM. She was on a ventilator for a few days and then moved to a bubble CPAP shortly after. She is now 11 days old and about a week ago she started having bradycardias and spitting up during feeds after they increased her from 1mL to 10mL feeds, going up 1-2mL per day and adding fortifier. She was 1 lb 7.6 oz at birth and is now 1 lb 10 oz.
They can’t find any cause for these episodes, but they just seem to be getting worse. She is getting my breastmilk and they were adding fortifier, but now they have stopped that to see if they can give her a break. The nurse today said that night shift had to stimulate her “quite a bit” to get her heart rate to go back up . They keep saying it’s just normal immature gut causing the spit up and therefore the Bradys. But then the nurse today said it’s a lot more than what she would say is normal or average.
Does anyone have success stories or any advice? I know the drs have said there’s nothing wrong with my milk, but typical mom guilt, I’m trying to find ways to blame myself. My brain keeps going to the worst possible outcome help!

 

[enriquegill012]

@cleocarter I had a 26+6; Brady’s were par for the course for us and was told it was a preemie thing. Your babe is still so premature. I’m not an expert just my experience and what I was told in a really good nicu, but this sounds typical.

Not sure if this is helpful but while I was reading your post I kept finding the good news in it. It’s so hard to see it when you are “in it”, but it’s really great that she’s off the ventilator already. My babe needed a month on the ventilator (she needed surgery right after coming out so I think it delayed her a little). It’s awesome you’re body is able to produce bm for her; it’s tailored to exactly what she needs and her chances of getting NEC go way down, keep up the good extremely hard work of pumping!

Are you doing much skin to skin? Because that can really relax a baby and help regulate their heart rate. But I also found my daughter would get a little too relaxed sometimes and Brady. Again, the top nicu I was at assured me that it was standard with babies this young.

Best of luck to you.

 

[enriquegill012]

Another thing; nurses are awesome but if you’re worried about the one nurse that said it was quite a bit more throw up than usual, you should ask to speak to the attending or the front line operating clinician on your ward and talk to them about what she said and they can help look into it for you. For us, nurses changed daily, but the flocs and the attendings were consistent and there for us with any top level concerns. If you’re worried about how they are doing her feeds, don’t be afraid to ask questions about it during rounds.

 

[enriquegill012]

Oh! Another thing! Most preemies have to deal with bad reflux. Their little bodies just haven’t developed all the parts that can prevent reflux from happening. Doubtful it has anything to do with your milk, but maybe they would be open to trying a more gentle fortifier?

 

[isaacmiks]

@cleocarter My LO was born 33+5 via c-section due to severe pre-eclampsia, so definitely a bit older - and she was in the NICU for 27 days. The bulk of our stay was feeding related because she really struggled to keep food down.

They eventually had to shift her to a continuous feed then begin to taper her down, providing a 15 min break between feeds, then 30 min, etc. Once she could handle condensed feeds, they started to increase volume. Once she got more settled, we were finally able to start bottle feeds.

They never found a reason for the reflux or excessive spit-ups… just an immature stomach/gut. Once she was home, she continued to suffer from reflux, so our pediatrician put her on the infant equivalent of Pepcid, which provided some relief.

She has seemingly outgrown it now, and she no longer needs meds (and eats like a champ). I’d say her reflux started to temper around the 3 month mark? But again - it really was much more manageable once she was on medication at home.

Sending you all the best wishes!

 

[vietphil]

@cleocarter Congrats on your new daughter!

I'm (37m) a recent parent of 27+2 twin girls. Brady's and such are pretty common from what I've seen. The alarms will be terrifying at first but eventually you'll gain confidence they'll fix it themselves or the staff will. After a few weeks they eased up until finally we didn't get them anyone.

The NICU was one of the toughest periods of my life and even more so for my wife. It's a waiting game grind and everything is full of unknowns. Things will go wrong. Just make peace with that. You'll try to find some answers and predict what's next and that's fine but at some point you'll find out every baby is unique. My girls were ahead of the game in some ways (such as breathing well) and behind the norm on feeding (still working on this at home). Each member of the medical staff has their own experiences and wants to help your baby but their differing opinions or suggestions can cause more anxiety. We found it best to anchor on the doctor and if everyone got out of sync, we had a cares meeting with the whole team. We only had to do that twice but it was largely helpful to all and eased our nerves some.

My girls are now 4 months (1 month adjusted) and have been home for 3 weeks. They still have challenges such as the aforementioned feed fussiness but otherwise beautiful, healthy babies. Once almost 2lbs each, now both 10lbs and sassy. The NICU now feels just like a strange, bad dream that's in the rearview now.

Your challenges will be unknown but something you can trust is you love your little girl and you'll do everything for her. Doubt and Mom guilt in ways can push you to keep finding ways to improve and become stronger. Just don't let it consume you as you are stronger than you ever thought you could be. Try not to look backwards to what you could have done or forward to what could happen too much. Be present in the now.

You got this.

 

[jimsorrell]

@cleocarter Our son was born at 27+5 and 2.5 pounds and reflux/a&bs were his big issue too. He had to go back and forth on respiratory support over his 85 day stay due to reflux during feeds (both while tube fed and by bottle). While he had no other major complications, it was definitely very stressful. We were told similar things about the fortifier etc. We did lots of kangaroo care during/after feeds which helped a bit.

He came home in his due date, at 7 pounds, but still had reflux issues. At that point he had learned to cough it out a bit better but we had to hold him upright pretty much all the time. The first few months we were very tired (shifts helped).

It’s 8 months now since he came home. He has grown out the reflux, and has pretty much caught up in growth and development to his actual age (11 months). It’s a huge relief, and I have to remind myself of that as I chase him around the house somehow longing for the days when he just sat still in our arms

Hoping the same for you, the NICU is a tough place! Keep it up and make sure you care for yourself too

 

[katrina2017]

@cleocarter My twins were born early as well , twin A had the same breathing , cardiac issues and feeding issues as your little one . Ended up lacking electrolytes due to burning so many calories from struggling to breath and poor feeding which caused the cardiac issues .
This turned into an IV of electrolytes and an NG tube till he was eating enough on his own .
Cardiac events corrected themselves once he was breathing off the CPAP and feeding better .
We now have him home and no issues !
Keep your chin up , I know how hard it is

 

[wright93]

@cleocarter Firstly, congratulations on your baby! My suggestion is to be there when the doctor does rounds and ask the doctor directly for a clear answer, ask them any and all questions you have. My baby was born at 30+5 and has been in the nicu 3 weeks now and I’ve just started having issues with nurses saying conflicting or unclear things to me regarding my baby’s progress that has caused me and dad lots of anxiety so I’ve made it a point to be there for morning rounds and talk to the doctors and nnp and they have been super clear on what is “normal” and what is of concern and what that means for her timeline/plan. Nurses all have different ways of doing things, some have more experience, and some are better at communication than others. Good luck to you and your baby