So much has gone on with Deacon since my last post. First of all, they found out that the reason he was 12lbs at 10m was that he was missing his valve between his colon and small intestines. I guess no body thought to mention that that valve keeps all the bacteria in the colon. If bacteria gets in the small intestines then they block the receptors that absorb protein, and EVERYTHING else! So from when he was 4 m til he was 10m, Deacon didn't gain anything! Plus his measurements stayed the same! His head didn't get bigger and he didn't get taller. He stopped advancing physically as well. We didn't catch it because he started crawling at 4m. So we all thought he was super advanced. But after he started crawling, he didn't advance. So they put him on some pretty strong antibiotics to kill all the bacteria. So to counteract that Ive been giving him a protein shake 2x a day. Its got probiotics, protein, and a banana in it. It gives him something good! So since then, he now weighs 21lbs!! Hes 16m! He just started walking as well! We have found though that that set him back quite far. :( He doesn't speak at all.
In other news:
I'm pregnant with another baby with Hirschsprung's! They just found out on an ultrasound 2 weeks ago. We are very upset, but everything happens for a reason, right? The baby will be born around the end of Nov. So that means that we will be in the hospital for most of Dec. Booooo! So we are marching on, and I'm going to keep everybody much more updated!
Talk to you all soon!
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Megan dear! You've been through and are going through so much! Thanks for posting this. Our Hirschsprung's baby is experiencing some delays as well, and there's a constant wonder as to the underlying cause. Are you dealing with yeast infections at all as a result of the antibiotics? That's another thing we can't get figured out...
ReplyDeleteAnd pregnant with another baby! Congratulations!! The HD is not easy news, but at least you have experience now and some time to gear up! How did you find out about the HD already? I'm very very nervous to have more kids. I'd love to hear from you. I'm pretty sure we emailed directly once before, but I can't remember your email address. Mine is kellyhoosejohnson@gmail.com.
I am trying to get the ultrasounds from the hospiotal. :) I had my beautiful girl and she is a huge miracle! She is completly without HD! I also had another baby and he is fine too! What they did was a detailed untrasound around 20w. It showed a massive dialation. I had googled it for a while before bringing it up with my midwife and asking them to do it. Hope that helps!!
Deletehugs. I did not know they could detect HD in utero, how did they do that? I agree with Kelly you already know what to do and mostly what to expect.
ReplyDeleteBest wishes on the delivery of #2.
Janel
Hi. I don't know if you still go on this blog but my son was born with hirschsprung disease. He got diagnosed at 4 days old. When he turn a week old they did the pull through surgery and took out 13 in of his colon. We had trouble with him wanting to eat. So he got sent home with a ngi tube. A week later he started eating like he should. At 11 months old we are having trouble with him pooping and he throws up and his belly gets bloated and hard. He has done this 2 weeks in a row now. He is now being treated with entercolitis. He was doing great. The barum edema X-ray didn't show no kink or blockage. They have ordered a upper GI test to make sure there are no problems there. Did you go through all of this? I could really use some support. You can email me at queenbrittany021@gmail.com
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