So, Jesse is now 5 months and as some of you know has a rare liver disease. He will be needing a liver transplant for sure, we just don't know exactly when yet. He hasn't been added to the transplant list just yet since he is stable, but once things start getting worse he will be added. Then family members and friends who would like to donate a piece of their liver will be tested to see if they are a match. This is a back up plan in case a full liver doesn't come in for him in time. His liver is swollen and hard now and his belly is so lopsided, but in spite of all of this, he is happy, smiling, giggling, and babbling! :) Hasn't quite rolled over yet because of his belly and tries to sit up, but the doctor told me it may be a little while until that happens, because of the size of his belly. She said it's like learning to sit for the first time and being 9 months pregnant. lol. Poor little guy!
His was off of all major medications because nothing seemed to be working. His bilirubin was hanging around 3-5 then jumped to 7 and this past weekend it jumped to 17! They said if it ever got that high, he would need to admitted, but all of his other levels were stable or went down, so there was no reason to bring him in right away, thankfully. But the doctors are baffled by his levels. He will have more blood work next week and is also back on a bile thinner to see if that helps again. Last week was full of doc appts., shots, and blood work. His vitamin k and d were at a scary level and had to have 3 vit. k shots otherwise he could have spontaneous bleeding and he is on a vit. d supplement. We are working on getting all his vaccinations in before transplant because once his transplant takes place, he will never be able to have a live vaccine again and if he isn't fully vaccinated and catches something, he could potentially die from it. Scary things!
He is growing well though which is great considering his condition. The docs couldn't be happier. The fact that he keeps food down is a great sign. He gets a special formula all day (it's so expensive!) and nurses at night. We have also introduced cereal (which he hates! lol) but he likes applesauce and sweet potatoes. =) He is about 17 pounds now and almost 25 inches long and still has tons of hair! I will post some recent pictures soon.
How are you ladies doing? I feel so out of the loop! How are all the babies doing?? I hope to get on here at least once a week or so. Anyone with Facebook and wants to stay updated on Jesse or just stay in touch can message me and add me.
Hope everyone is well. <3
Chantal, I am so sorry you are going through all of this! I am amazed by your strength and your faith. I just want you to know that you are in my thoughts and prayers every night. Please give Jesse a hug and kiss from his cyber aunt.
Again, I am so sorry you are facing all of these challenges. It just isn't even something you really consider when we are pregnant, that our child could have some rare disease. You sound very upbeat though. Please know that if you ever need to talk or just vent (because I am sure this is very stressful for you), you can PM me anytime. I get the e-mails when people PM me, so just because I am not on MH at that time, I check my e-mail a few times a day.
I'm praying for Jesse Chantal. I hope everything turns out well. I have confidence that things will turn out just fine. Leave it up to God and he will take care of your little Angel. I'm sure Jesse has a purpose to serve in this world. God Bless!
Thank you ladies! I will keep everyone updated. Docs think he will be having the transplant in 3-6 months, so probably before his first birthday :( I may not be on here too much, but I will try to. I will be busy trying to raise money. Didn't think it would happen this quickly, so I need to focus all my energy on Jesse. Tough times, but I know God will see us through.
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