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My poor sweet Jesse was admitted yesterday (i am staying with him 24/7 as well) into the hospital. He is jaundiced and we are trying to figure out why. he may need surgery to correctCorrect (new formula) a tube that leadsLead poisoning to the liver or for his gall bladder (they are not sure he even has a completed one from the u/s. either way we are trying to move quickly and find answers so his liver isn't overworked from all the bile that could be backing up into it. They also noticed a heart murmurHeart murmurs and other sounds and an oddly shaped heart. So they are looking into that now as well. Poor thing!! i am so sleep deprived and worried to deathDiscussing death with children Gangrene Liver cell death Loss of a child - resources Sudden infant death syndrome about him. he is yellowYellow fever vaccine Yellow nail syndrome and the whites of his eyes are as well. his levels are elevated pretty high so we are working as quickly as we can to figure this out. He nurses like a champ still, just started cooing and smiling and is now 8 weeks old and over 10lbs. Please pray. I will update when i can.
Again Chantal, I am so very sorry you have to be going thought this!! Keep us updated, We will pray that really thing turns out OK!! THinking of you and baby jesse!!! (((HUGS)))
oh chantal, that little jesse is going to give you grey hair early! He's such a strong little man though, i will pray for you both and keep your whole family in my thoughts. poor little thing....hang in there chantal!
** Jesse will have exploratory surgery on friday and then if it is what they are thinking (bili-something) they will go ahead and correct it. Could be 30 min to 2hours, depending on what they find. please pray it all goes smoothly. My poor sweetie pie. Also, his heart murmur is okay and not life threatening.
**the hole may close on its own, but if it doesn't they said he can live with it and be fine. also, the boot shaped heart can indicate a serious heart condition, but in jesse's case it's normal and he just has a unique heart!! Thank God!
**This is really hard for me. Please, please pray that Jesse will be ok. IF they find whatever the problem is and correct it (if they can), it's more likely that he will have issues with his liver in the future. I do not want to go into detail until I hear how things go on friday.**
The condition is called biliary atresia. They still don't know if that's what he has for sure, but if he does, the surgery could actually last up to 5 hours...not 2 hours. =( And if they do the full surgery, he will be in the PICU (icu for kids) for 2 days at least. I feel like I am dreaming. I just want to wake up and have my normal healthy baby back. I'm glad they let us go home last night! What a blessing to get good sleep in our own bed and snuggle time with my baby before tomorrow. We have to be at the hospital by 8:15. The last nursing session before surgery will be by 4:45am and between 4:45 and 6:45 he can only have pedialyte or water if he is hungry. Then IV fluids in the hospital when we arrive. I keep praying and hoping when they go in that it's just a simple blockage that they can clear it and he can recover from quickly. I can always hope! But only God knows. Basically, if he has this disease, there is a chance he may need a liver transplant in the next 2 years (or sooner) or sometime in his life. I will be going to this hospital once a week for a year for testing and monitoring. Then every 2 weeks, every month and every 6 months until he is 18. I sometimes hope it's not biliary atresia, BUT at the same time we need a diagnosis and if it's not that, then the poor baby needs more testing and more poking done. I am just hoping for the best. The ONLY symptoms he has are, greenish/whitish stools, and yellow skin. Other than that, he is normal! He is gaining and growing properly according to their charts, so that kinda shocked them. He is strong, I know he is. But if the procedure to correct it fails, he will need a liver transplant without question. I'm an emotional wreck...please just pray for us. You can even let the ladies know everything I told you here. I'm so thankful for all the support and prayers. I will go now and try to keep everyone updated on everything when I can and when I hear something.
AWWE! I CAN FEEL YOUR SADNESS! biliary artesia is the same thing they though hanna had, but they sorta ruled that out! my hanna still has a problem with her jaundice (direct) but a preemie specialist in another town (2 hours from here-where she stayed a week in nicu) told us that she may grow out of it since her liver & gallbladder where showing no problems! keeping you, jesse, and your family in my prayers! hope everything goes well...keep your chin up!
My thoughts and prayers are with Jesse and your family. Hope the surgery will go well and he will recover quickly. It's heartbreaking to see your little one going through all this. My son had a surgery when he was 1, and I was a mess, so I know how you must be feeling. Stay strong for your baby. Good luck!!!
Are they saying it could be biliary atresia? You and your family are in my thoughts.
Let me know if there is anything I can do. You have my number.
Hugs,
Kelly
**the hole may close on its own, but if it doesn't they said he can live with it and be fine. also, the boot shaped heart can indicate a serious heart condition, but in jesse's case it's normal and he just has a unique heart!! Thank God!
I am so sorry to hear about Jesse's problems...I will keep on praying that everything goes well on Friday!!!
~chantal~