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280369 tn?1316702041

Update on Jesse...it's been forever! How is everyone?!

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? Any new pregnancies or deliveries? 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
16 Responses
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Avatar universal
OMG, I am so sorry that he has the liver disease, I will be praying for you and your family. Sorry I haven't been a great support but I rarely have the time to get on here with the way my life has been going especially in the last week. Jesse is so beautiful I will definitely keep you all in my prayers.
Helpful - 0
470885 tn?1326329037
Thanks for the update, Chantal.....Jesse is adorable, but I really feel for you and your family, given the struggles you've had so far in his young life. I'm praying for you.

I had my second son on January 27....Was induced (had a few scary moments because they induced me, not because I was past due being 41 weeks, but because the results of my biophysical profile u/s were "concerning".  Labour lasted about 12 hours once it got going, and DS was born healthy and just fine!  We even recently found out that he didn't inherit the same eye condition that his brother did - which he got from me - and that has been cause for celebration at our house. It was a 50/50 thing and every child born in the last 3 generations has had it - he's the first one that hasn't.  
Helpful - 0
558787 tn?1327785288
Hi hun, just sitting here and thinking how to raise some money for jesse transplant surgery and was thinking why dont you donation page. There is a site called www.justgiving.com where people can give money to jesse, i sure that there are some people on here that would love to help. x
Helpful - 0
280369 tn?1316702041
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.
Helpful - 0
873692 tn?1337275733
oh hon you lil one is really trully a gift from god and im glad he is doing so well i had my lil boy dec 20th it was scary at 1st had to call the ambulance  but then everything progressed really fast and then on mon 15th of feb he had to have surgery he had pyloric stenosis but he is doing well cant wait to see some pics
Helpful - 0
964745 tn?1265386854
He is so cute... very happy to hear all of you are doing good. he is such a happy looking kid...
Helpful - 0
287246 tn?1318570063
Hey Chantal,

Just commented on Sept. 09 forum :)
Helpful - 0
145992 tn?1341345074
Thanks honey.  Not yet, we just know that the latest would be January 2011.  He wants a very romantic ceremony but I'm like whatever, let's go to city hall....lol.  We're trying to compromise.

I can't wait to see new pics of the boys.  I can't believe Jeremiah is going to be 2.  That's insane.
Helpful - 0
280369 tn?1316702041
Thank you so much everyone! Time sure does fly! wow. Jeremiah will be 2 in April! And Jesse is 5 months...When you hear it goes by fast, it really does. I will keep you all informed as Jesse gets closer to transplant day, but for now, I am enjoying all the little things he does! :) He is so precious and I am so blessed to have such a wonderful family.

Rosa...when do you find out what you are having!? I will have to go check the posts. How exciting!

Jezi...I'm so happy for you and Richie! That's awesome. congrats!! do you have a date picked out yet?
Helpful - 0
558787 tn?1327785288
Oh chantal it's so good to hear from you, sounds like jesse is just doing great im so pleased. Can you believe our boys are 5 months now, how quick has that gone. Hope jesse keeps doing well. x x x x
Helpful - 0
676912 tn?1332812551
Hey! So good to hear from you! Wow! I can't believe he's five months already! Time flies! I'm gonna send you my info for facebook so you can add me if you want to. HUGS and prayers to all of you!
Helpful - 0
571099 tn?1308234148
So very good to hear from you!!!  Im so glad he's a strong little boy, and a powerfully strong mama to help him through it all.  VERY good to hear from you!!!  hugs to all, and prayers always!!  
Helpful - 0
127529 tn?1331840780
Jesse is an amazing little boy and he is so darned cute. It is nice to hear your update, I hope things go to plan for you guys and Jesse  gets to grow up happy and healthy as any other kid. Best wishes.
Helpful - 0
Avatar universal
Oh my, he is so cute!  
Youre all on my prayers, you are such a strong woman!!!!
Big hugs for you Chantal!
Helpful - 0
376148 tn?1309899577
Hes so cute!! He has more hair then my 14 month old! Haha Im glad to hear hes doing better though..im hoping he pulls through for a while and wont need to be put on that list for a very long time!! :) On another note..im doing great and babys are doing great...i find out what im having tomorrow so you  have to stay posted! I hope to see you on here more! :) Its to bad that formula hes on is soo expensive...but w.e works right!! Also the breastfeeding still in the night in great!! I bet he still loves it!!  I stopped breatfeeding daniel at 4 1/2 months..i hope to do it longer this time around!
Helpful - 0
145992 tn?1341345074
Oh honey, I'm so sorry to hear of the problems Jesse is still going through but he's gorgeous and he looks very happy.  Can't wait to see pics.  Well Richie and I are doing great and getting married this year.  Jayden is growing like a weed.  He looks like a 3 year old but he's only 2 1/2.  Everyone is good.  Hope things progress in a positive way with Jesse's liver transplant.  Continue to keep us posted.
Helpful - 0
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