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Preemie worry :(

nikkiuknikkiuk member
in Preemies
I am SO tired of the daily battle and unbelievable worry of my preemie. Nobody seems to have the answers to help. He spent 35 days in NICU then a week after he was discharged, he was rushed to a childrens hospital 300 miles away for emergency surgery for an inguinal incarcerated hernia. Two days in intensive care where he was swollen like a balloon due to the blood transfusion and intubation. I don't care what the doctors think, he was traumatized by that, and by the testing they did before the operation and then being starved for 4 days afterwards - they had removed an inch of intestine so I get that. They changed his medication for Silent Reflux and it flared up, big time. Then followed weeks back home trying to find the right meds for the silent reflux which caused him constant pain. Then we have frequent choking episodes which are terrifying as he all-out panics every time. It put him in hospital where they did a chest Xray using the scariest machine I have ever seen. Now he is teething! His congestion is so thick and stringy he is suffering all day, every day. I think that's part teething and part refluxing. The Pedi said that if we can't settle this, he needs to go back to hospital for a scope down his throat - more invasive procedures. I don't think he can cope with much more and I have seen a change in him. He's just so panicky all the time, it's breaking my heart. 

Sorry, just needed a rant :(
Master of 'the look' 
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Re: Preemie worry :(

  • dunnmommydunnmommy member
    My 24 weeker DS had to have the same emergency surgery and same terrible recovery in the PICU. After that his reflux was worse and he was rapidly losing weight. He was snoring at night and always congested. I went to the ENT and refused to leave until they could figure something out. Our ENT is amazing. He had to insert a small camera down my sons nose after putting some numbing spray in his nostrils. (It sounds invasive but it was fast and did not seem to bother DS that much.) It was so worth it! DS had inflamed vocal cords cutting off his breathing causing sleep apnea, congestion, and snoring. Also his adenoids were so gunky and green from reflux and snot build up... (Sorry long story!!) DS had another surgery removed vocal cord flaps, removed adenoids, and put tubes in his ears. It took about a week for him to recover BUT now he is 100% reflux free, no congestion/colds, and sleeps soundly. Long story short, Pediatricians are great but they don't specialize in specifics so try the ENT. You never know what it could be until you try and for us it paid off tremendously! I know more surgery is scary but for me knowing that these surgeries could fix so much of my sons pain was worth the sacrifice. Good luck!
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  • nikkiuknikkiuk member
    @Usm123 - thank you :) Knowing that really, he's had a smoother ride than many really does help me. Nine surgeries in less than two years is just awful. 

    @dunnmommy - thank you too!!  Although it's truly awful to go through any surgery or invasive testing, it helps to hear a similar story, and one with a happy ending. Our situations sound remarkably similar although my DS's apnea is no longer technically an issue - but we won't let them take the monitor away lol. We had a huge choking episode last night and it really shook me and DH up and we're just exhausted I think. Was your baby OK after the surgery or did you see any difference in how he was, in himself?

    He is teething and that seems to be causing quite a bit of congestion. Those little teeth are almost through and I just can't believe that, after everything he has been through and is still going through, that he's now teething at 3 months (one month adjusted). Crazy. He isn't even holding his head up yet!

    I'm just gonna have to bite the bullet and see an ENT. I am assuming, maybe wrongly, that he will need surgery (the Pedi thinks it's a possibility) so it's time to man up and get it sorted. Thanks ladies - again, sorry for the rant. 
    Master of 'the look' 
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  • nikkiuknikkiuk member
    His crib is elevated but his choking is mostly when he feeds - thankfully it's rarely when he is sleeping. We are going to the Feeding Therapist next week so I can finally get someone to see how bad he is feeding (he really crap lol) and can hear the strange squeeky noises he makes when feeding. AND can witness his mouth breathing too. 
    Master of 'the look' 
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  • dunnmommydunnmommy member
    It took about a week after surgery for my DS to get back on track sleeping, eating, and just being "normal". But, I will say that it was such a huge difference once he was fully recovered that I could not believe it. His personality began to show through. He did not choke while eating or sleeping anymore. His balance improved tremendously. Just a whole bunch of things got better. I really saw a huge difference in him! We also had a swallow study done (before surgery) that showed the same results as the camera down his nose showed. The ENT confirming what the swallow study showed made me even more confident in my decision to do another surgery. Follow your gut! It's not easy being a preemie mommy but it sounds like you have to look at all the options out there to help your little guy!
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