New to board, looking for some reassurance — The Bump

New to board, looking for some reassurance

Hi ladies,

My baby girl was born at 34 weeks and 2 days. She is now 16 days old. She spent 8 days in the NICU, which I think was not enough time, but she was doing really well so they sent her home last Sunday. We ended up back in the hospital the following Thursday because she had some episodes where she would choke while she was eating and her lips turned blue. I started becoming afraid to feed her because I didn't know what to do. While at the hospital they did an x-ray to check if she had acid reflux and it showed she did have some. They gave us preemie nipples and told us to feed her less food more often and keep her upright 20-30 minutes after eating. She started to do well and we got to come home this Saturday. She's getting better at eating, but she forgets to breath and she's on oxygen. We have to pace her by taking out the bottle so she can catch her breathe. It's so stressfull, especially at night. She eats every 3 hours. The past two night she's kept us up because she gets fussy. She seems to cringe like she has tummy pains. My husband and I are both exhausted. Any advice? We're going to see our pedi tomorrow and for now she has recommended we buy some drops for gas. I hope it works. I'm just glad I found someplace where people can relate to these issues.

Re: New to board, looking for some reassurance

  • So sorry you are having such a tough time. I am only responding because we went to a NICU reunion last weekend and I saw a friend from when we were in the NICU and her baby boy had similiar troubles.  She got to bring him home and after he was home for a week he choked, turned blue and had to be rushed to the hospital after my friends mom (nurse) revived him. She was so scared. He stayed in the hospital for an another week - got on reflux meds but the best treatment ended up being that they thickened his milk. Seemed to solve the problem.  I know every baby is different but if they have not considered, maybe it would work for you. Best of luck and hang in there. I know you're tired and scared.
  • Our boys were born at 26 weeks and spent 67 days in the NICU, but they came home at 35.5 weeks gestation, which was around the same time as your daughter.  They both came home on oxygen and had/have reflux too.  We started with Zantac, which didn't help things at all, and switched to Prevacid, which seems to have helped.  One of our sons did the exact same thing for the first few weeks home.  The first day, he forgot to breathe and his lips turned blue and he set off his apnea monitor.  After that one time, we always paid close attention and caught when he was starting to not breathe so we'd take out the bottle and give him a chance to catch his breath. 

    There were many times where he would choke while he was eating and it would take several seconds for him to start breathing again.  It got to the point where I didn't even want to feed him and I was a nervous wreck every time he ate (also every 3 hours).  I can't remember the exact time, but I think it was about 2 or 3 weeks after he came home that all of a sudden it just stopped.  I was told this is very common for preemies and they eventually grow out of it.  It seemed like once he hit his due date everything was fine as far as feeding.

    We used the Dr. Brown preemie bottles and they seemed to help.  My only advice is to just watch her carefully and take out the bottle if it seems like she is slowing down her breaths.  And as far as the choking/ reflux, Prevacid worked for us and also just time to grow out of it.

    Hang in there!!
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  • Ds has reflux but never had an episode like your dd. However, he's on prevacid and it seems to have helped a lot. Like pp said, I also know of other people who have had great success with adding a *tiny* bit of cereal to their bottles to thicken and make the formula a little heavier so it stays down better.
  • relux is the devil!

    Robbie was a 26 weeker.. he actually had a hiatal hernia (not related to being a preemie) and when they fixed it, they did a fundoplication (wrapped the stomach around the esophagus) which was supposed to stop the reflux.. only it doesn't work. He's still got it.. Bad enough that he ended up back in the hospital for dehydration.

    Right now, he's on Pepcid twice a day, plus mylanta up to 6 tmes a day and mylicon drops up to 4 x a day.

    The pepcid has helped. It doesn't stop the reflux from happening, though.. it just eases the pain.
    You'll get the hang of feeding her.
    I also recommend the Dr. Brown's bottles.. and really watch and listen.
    Robbie's eyebrows go up when he's stressed.. so I take the bottle away.. or if he suddenly swallows kind of loudly.. I know it's going to happen. He hasn't had a brady while eating in a good while- because I catch it.

    You might ask for a referral to a pediatric GI specialist and see if they can do something for her. but likely it's going to just be a matter of tinkering with meds, trying to slow down her swallowing and waiting..

    It sucks..
  • so sorry that you're going through this. DS doesn't have reflux, but when he came home he had a few brady's and was readmitted. DD has reflux (it's now almost all the way gone, but i was too afraid and superstitious to type "had reflux"). she was on pepcid, then prevacid. the choking and turning slightly blue/grey was unfortunately common during feeds when she was very young. it stinks, it's so scary to feed when that happens. please let us know what happens at the ped. i'll cross my fingers and say a prayer for you.
  • I'm sorry you're having problems.

    Both of my babies have reflux. My son deals with it well and doesn't need medicine. When he first came home he would sputter and forget to breathe. It wasn't as bad as you are describing but I remember being really afraid to feed him. He eventually grew out of it.

    My daughter has really bad reflux and she stayed forever in the NICU because of feeding issues. She uses a special nipple. She was first on Axid, it worked for awhile and then stopped. Now she's on Previcid and has been getting 27kcal (neosure added to breastmilk) to help her gain weight. She's been doing pretty well with this. The gas drops do nothing for her.

    Good luck and I hope you find your answers soon.

  • DD has reflux too, but what you're describing sounds like it might also be apnea of prematurity.  We dealt with this until DD was 41 weeks.  It would hit while she was eating and like you said it turned me into a nervous wreck during feedings.  Perhaps your DD should be on an apnea monitor?  I know that they say that apneas during feedings don't count, but they ended up being true episodes when my DD was being bottle fed (they can tell by the breathing/heart rate patterns).  She just had to outgrow it.

    Watching her like a hawk to try to catch the beginning of a choke might have stopped some of them, but even so it would happen.
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