Friends, Brian and I are oh so weary. This journey was been a long one (6 months long this coming Wednesday) and we are tired. We just want our little boy to be home with us. We want Annabelle to be with her brother whenever she wants to. We want Jude free from pain and testing. Brian and I want to be together.
We just want a deep, deep rest for our whole family.
Please join us in asking the Lord for this journey to be much shorter than we think it will be! And if He doesn't see it best for the journey to be short, please join us in asking him for even more endurance and strength for Jude (especially!) and our family.
Here is the latest on Jude:
- Jude is scheduled to be completely weaned off methadone tomorrow afternoon. Yesterday and today's weans were especially hard on our little sweetie. It is really hard to watch his body struggle to hold on to the last little bit of this drug. In the end it is better to be off the meds but it is had on his little body. My heart nearly broke in two today when he was crying and couldn't settle because his little cry sounds like "Ma!" over and over. Yesterday and today he received two PRNs of atavan to help him overcome the withdrawals.Please pray for this last little wean to be easier than the last. After he comes off the methadone he will be weaned off his clonidine.
- Jude is still throwing up several times a day. (insert big sad face here) Today was the worst day yet. The docs (and we) are scratching our heads for answers. On Friday Jude had a gastric emptying study completed to see if his digestive system was emptying normally. And it WAS!?!?! We weren't sure if we should celebrate or not....because... well, we wanted some answers. And we are still without them. And the docs don't want to move forward with deciding how Jude will be fed until we can figure out why he is throwing up so much. And so, we wait and try to figure out what is going on with our little man's tummy. Many of you have asked how soon we might be taking our little guy home...our answer? We really don't know but we hope to know more this week. Will you just pray over this whole situation? We know we can count on you, our faithful prayer warriors!
As promised, here are a few pictures from the last two weeks:
Another sweet visit between siblings!
Getting ready to move from the PICU to a private room. Holding hands with my little buddies to make sure they feel safe! :)
Here is Super Bear again! Jude is quite attached to this little guy. Super Bear is officially a bedtime necessity!
Visit from Nana Beth, Aunt RaRa (notice the rainbow earrings and bracelet!) and Annabelle!
Jude also got visits with several of his NICU girlfriends (ahem, primary nurses)! We were so excited to see all of them and celebrate Jude's progress. We love these ladies! (Some of our NICU friends came when Jude was sleeping so we are hoping that they will come back for a picture with Jude so that he can always remember them!)
Jude and Erin
Jude and Anne
Jude and Meghan
Jude in his new BIG room! LOVE the big windows with a view of the big bridge (and a parking garage, haha!)
Praying for you guys! That pic of him holding his little frogs hands.... love it! Too precious!
ReplyDeleteJude and your whole family are such a big part of my prayer life. He is still at the top of my baby prayers and candle. It will be a happy situation when he is 'home free'. I am giving so much praise and thanksgiving to God for bringing Jude so far in such a short time since his last surgery. He is almost there! Sending love and strength through prayers to you all.
ReplyDeleteI am so happy for Jude. A private room is a huge step. Home is so close. Raygen threw up a lot when we were weaning her from methadone also, especially if we went too fast so I am praying once he isn't going through withdrawals his tummy will settle. God Bless you and your family.
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