So, to continue this story and help others learn more (as well as myself). I have asked several people to share their stories as well. I can only tell what I know about my son. They have agreed which Im SOOO excited about! I think I would like them to email me posts they want to post and I will post them with their names on it. Their comments to me are the REASON I wanted to do this. If you are reading this and you have a story to share PLEASE email me so I can post it!! Im going to try posting alot of different topics and things I have tried, if you have a comment please share!
Weight Gain/Losses
When Deacon was born, he weighed 7lbs 13ozs. When he left the hospital a month later, he weighed the same. My pediatrician took his blood several times and found out that he was very low on salt. You can't gain weight without salt. So she put him on saline 4x a day. That went on for 1 month. He gained 3 lbs. It was crazy fast! Then they took him off of it because it was going too fast and they were hoping he would just continue gaining. Well he did for a while. At 4 months old, he weighed 12lbs. It was great! It was like he was a normal child. Then we went to his 5 month check up and found out he hadn't gained and she told me to start feeding him food. He was so not ready. He would scream when I tried to feed him. It was awful. But whenever I would go back to the surgeon or the ped they would weigh him and he would be 12lbs. I refused to feed him when he was 6 months. He was getting a complex. lol. We just amped up him formula to 24 calorie and mixed it with baby cereal. We did that because the formula was going right through him. So acidic. He was 12lbs even when they gave him his stoma closure surgery. That was on Jan 16th, 2009. He was 8 months. After that surgery he gained 2 lbs in 2 months. We were so happy! We had started feeding him again solids right after his surgery. And he loved them, finally. He actually ate real meals. We were told to feed him high fat foods, like potatoes with salt and butter. But I have found that if it has fats and or oils in it that it goes through faster. Therefore hes not getting anything from it. I have found that breads are great! They actually slow down his food and make it thicker. So for now, we are feeding him everything that we eat. I have been thinking and looking for something more for him. Something that will hopefully replace all the nutrients in his formula. I would like to take him off formula at a year. But with all the articles I have been reading about lactose intolerance in HD babies, Im thinking about putting him on almond milk. I went and saw a natural path the other day and she gave me a protein shake for children. Its called Ultra Care for Kids. Its got lots of great stuff for kids trying to gain weight. The only thing is that because he has no colon (which absorbs protein) Im not sure how much if any of it he absorbs. The reason I say that is because whenever he takes it his poos go very liquidity. Im not sure on what to do now. Do I give him more than I have been hoping that he absorbs more because he's eating more? Or do I give up because Im throwing my money away and he's not getting enough to warrant giving it to him? It is also making him very full. He dosent eat as much as usual. Im not sure what to do.
Plus because he is missing the valve that holds the bacteria in his colon, he has alot of bacteria. So the GI prescribed antibiotics. I go and see him at the end of this month. Im not sure I want to continue with them. Im pretty sure he wants to have him on them for a long time. So instead I've been giving him probiotics. I give him the antibiotics in the morning and night and I give him the probiotics at noon. Im trying to keep a well watchful eye on him to see what they do. Any thoughts????
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I can relate on the weight gain issues. Max has short seg HD, so I don't have the same stuggles as you, but I still have struggles. Max was gaining great until about 6-9 months old, that is when he became super active and also when normal babies start to eat solids (max was such a poor eater, he was great at the bottle, but even then he did not drink as much as other babies would, but he gained)
ReplyDeleteI don't know if he problems w/ weight gain are due to the HD, if he is just gonna be small (not everyone can be tall and big)or if there is something more going on.
we just saw an allergist and she wants him on more protein, so thanks for the Ultra Care for Kids tips. Right now I give him pediasure, carnation instant b-fast, I hadd coconut cream to his milk, I blend up avocados to his milk - I make thin smoothies for him to increase his cal and fat - but I need to add some protien in that too.
He did not do well w/ cows milk at a yr (was on BM 100% for the 1st 11ms - I pumped) so we went to say and he did not do well w/ that so Then I did goats and almond milk. We are now doing lactose free cows milk and I think it is working out well.
I like to change up the flavors of milk and what I give gime (smoothie wise) since he is not a big eater I don't want him to get used to only one flavor and then when he is older and maybe eating better he will use use to Tasting lots of diff flavors.
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