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***lemen99***

OscarQOscarQ member
in Preemies
How was Andrew's silent reflux managed?  Finding your baby blue well, that has to be the scariest.
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Re: ***lemen99***

  • lemen99lemen99 member

    Here's how it went down:

    Andrew reached his due date and he was ready to come home but he wouldn't.eat.  He acted like he was too tired to eat -he'd eat a little and stop or not eat at all and very rarely take a whole bottle with a good suck, so we knew he was capable. 

    His red blood cell count was right on the ragged edge, but not low enough to warrant a 3rd blood transfusion, so I kind of suspected anemia but the doctors thought he just didn't get it.  Finally a week after his due date, they were starting to talk about how to get him home (ie: a tube of some kind) when they ran an upper GI and noted the reflux!  He never had any outward clues that we could tell.  It seemed like the doctors were not big believers in the reflux meds, but, 2 days after being on them he started to eat and within a week he was taking all bottles orally.  They realized he had been experience pain from silent reflux and therefore was refusing to eat. :( He came home 3 weeks after his due date. 

    Shortly after he got home he started to projectile vomit. He couldn't sleep without behind held.  It was terrible.  At that time we realized he'd gained weight, and suspect that the NICU had him on a min dose to get by, so we upped that.  We also held him upright for the first 1-2 weeks until things were under control.

      Once I came home, since I was home more often, we also realized I was drnking WAY more milk than I had been.  When we were at the NICU all  the time I ate in the cafeteria and drank a ton of water.  When he came home, I was eating cereal + milk (and I drown my cereal in milk) a couple of times a day and yogurt. I promptly cut dairy out of my diet and switched to Nutramigen.

    Thankfully Ryan thought he heard a weird noise and when we went to his room, we found he was really having a hard time clearing his airway and he was turning colors. We picked him up and he was okay, but we learned leaving him on his back didn't seem safe.  We got a sleep wedge (elevate mattress) and sleep positioner so he could sleep on his side so he could clear his airway.  They are no longer recommended, but, it was so much better for him because the puke would just go to the side.

    After that he was doing okay but still not awesome.  ASAP we got into a GI specialist. Since Andrew was puking from the time he ate, up until the time he was eating again, they diagnosed him with delayed gastric emptying.  That seemed to help a lot.

    Andrew still puked constantly, but he did much better after that!   We went through periods where he would outgrow his meds and it took us some time to figure out that's what happened, but he grew well and we didn't have any more blue episodes -- we just had lots of dirty laundry to deal with, ha.  (Andrew didn't come home on monitors or anything either.)

     Andrew is still on both meds (Prilosec for reflux and Eryped for delayed gastric emptying.)  He is 2 and does not spit up/visibly reflux anymore, so we have tried weaning off Eryped twice.  (The plan was to do that first, then Prilosec.)  Both times he immediately got an ear infection, so we went back on.  We have yet to be successful and at this point I think I want to wait until he can give us some clues as to how he feels (talking) since that's not that far off. 

    He had tubes put it + adenoidectomy in Dec.  Once we started to take him out in public (1 yr adjusted in Apr10) he was more or less one big sinus + ear infection with major antibiotics until Dec.  He would have a sinus infection with no outward symptoms but  major fuss pants - I insisted something was wrong and a CT scan revealed the infection.  ENT said she was sure that this was all due to his reflux and constant irritation there, so I can only guess he still has reflux.  He burps a lot but less than he used to.

     

     

     

     

     

     

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  • OscarQOscarQ member

    Thank you for the details, that is quite a lengthy ordeal you've been through.  Kevin has a gastric follow-through tomorrow so that may reveal delayed gastric emptying.  I'm also starting to wonder if his hernias are aggravating the situation but I don't know enough to understand if that is a real possibility.

    Thank you again!  I really appreciate you taking the time to share your son's situation with me. 

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