Hi, I’m Amber, I’m a new mom to a beautiful 4 month old baby boy named Riley. I have been looking through the forums for some time now to get answers but I thought it was time to sign up because it would be so nice to talk to people who actually understand how hard it is to have a baby with reflux. So let me tell you a little about Riley,he was born at 35weeks and spent no time in the NICU so I think I got a false sense that everything was going to be alright. From day one I had a very hard time feeding him it was a good feeding if he at 15ml,at the time I was pumping because he couldn’t latch on. Every feeding was a struggle he would choke and gasp for air every time,being a new mom I was so frustrated thinking that I was doing something wrong,I wondered why I couldn’t feed my baby.He started to look pretty skinny to me and struggled to get back up to his birth weight, 5lb 13oz,(pretty big for 35weeks but I had gestational diabetes)
When he was 2 weeks old the worst thing happened..he stopped breathing and turned blue.. needless to say I freaked out!! He ended up spending 8days in the hospital where he had every test known to man done. We found out he had a problem with the suck/swallow/breath reflex so he would burn too many calories trying to eat so he was put on high calorie formula through a ng tube and we worked with the speech pathologists to help him with his feeding.He also has Laryngomalacia which I guess is due to being premature. We also found out that he has reflux but was not aspirating so he was put on zantac.He has a few apneas in the hospital so be were sent home with an apnea monitor.At that time I had no idea how much this reflux would rule my life.The tube was taken out and his feeding got better but everything else just got progressively worse, my baby would scream all day long!! Finally he was diagnosed with milk protein allergy and put on elecare..that seemed to help his tummy troubles but he was still unhappy all the time.His GI doctor changed his meds to compounded prilosec,his dose right now is 2.4ml 2times a day,he is almost 15lbs. 2 weeks ago he was put on Eryped .5ml every 6 hours He defiantly vomits less but he still throws up all day long, he never wants to be put down and he is always fussy and in pain alot!! This is so frustrating just when I think things are getting better I realize they are not. To make things worse he was just diagnosed with RSV.. needless to say he is not a happy camper..the nebulizer seems to help a bit but not much..I just want my baby to be happy, it’s so hard not to be able to fix things for him..I am so glad I found this means of support!! Amber a.k.a Lady Lemonade..when life gives you lemons we gotta make lemonade!
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