The past couple of days have not been the best as far as eating is concerned for Jimmie. Yesterday morning he pulled his tube out and they left it out until evening and Rachael said he pretty much didn't eat or drink anything all day. Then today he puked up his tube, but they put it right back in. Rach just didn't have the physical or emotional energy to deal with him being hungry yet refusing to eat. I think it's safe to say that after being a bit encouraged by some success with solids- Rachael is now becoming rapidly very discouraged.
Rachael feels he's starting to throw a fit as soon as they put him in his high chair. He's also been eating less solids and what he does eat is a struggle. She's been struggling emotionally as well. It's been a tendency for her to go down in the dumps when Jimmie has bad days. Pray for her and Justin to be able to rise above with peace and acceptance and to not lose sight of the amazing miracle Jimmie is and all they have to be thankful for.
Rachael did talk to Dr. S. again today in preparation for an appointment tomorrow with the Neo's at Children's Mercy. Dr. S. had a phone conversation with Children's in which he tried to express his and Rachael's wish for a tube weaning plan. He didn't feel like he got anywhere though. He said they are very conservative and that they would not be okay with Jimmie going hungry and losing weight in order to wean him.
Both Dr. S. and Rachael feel that some sort of aggressive, but safe and medically supervised tube weaning plan should be tried before they resort to a permanent g-tube. He agrees with Rachael that probably the majority of the kids that go to Children's, who are 23, 24 weekers and who are on tubes- have had a much more serious medical history than Jimmie. Children's usually sees these kids through a few years (4 or 5?) on a g-tube- before they are able to get rid of it. So perhaps they are just acting out of habit with Jimmie. Dr. S. also said there is the possibility Jimmie may end up needing to have a tube for a few years, but agrees with Rach that they ought to give weaning a good try.
So Rachael will try to communicate her feelings about this to Children's Mercy tomorrow. She is always seeking "the plan". If they give her a satisfactory "plan". That would be awesome, but all signs are pointing to them taking a more conservative route. If that is the case Dr. S. will go elsewhere to try to find tube weaning help for Jimmie.
Just continue to pray for Jimmie's little brain and psyche to "let go" of any fear or bad connotations with eating and drinking. Pray for him to consistently eat! Pray for Rachael and Justin to be able to hope, but also accept.
Jimmie is just doing so great and continues to be such an amazing little miracle. His lungs, his body, his eyes, his brain and development are just phenomenal for a 24 weeker!!!
Thank you for your prayers! I'll update tomorrow about the Neo appointment.
Love,
Amber
i will pray! Even with Madeline, sometimes she absolutely doesn't want to eat solids, wants nothing to do with them. I think that it just takes awhile to get used to. I hope that's the case with Jimmie. And, I hope that someone can give you guys a plan. I imagine it's frustrating not having a plan from the doctors! Love you guys and are always praying!
ReplyDelete*by the way, the pictures are so cute! love the hat!
He is just so cute and sweet. What wonderful pictures!
ReplyDeleteWe're continuing to pray! "Bless the Lord, O my soul: and all that is within me, bless his holy name. Bless the Lord, O my soul, and forget not all his benefits: Who forgiveth all thine iniquities; who healeth all thy diseases;" -Psalm 103:1-3.
We love you all!! Give each other and Jimmie hugs and kisses from us.
Adrian and Janelle
I hope that I can give Rachael and Justin a little comfort here...my little guy (10 months now) fights every time we put him in the high chair, too. We don't have any eating issues, but he's been fighting us for a little over a month now. It's a stage...a normal developmental stage. Our big boy (2 years, 4 months, and born at full gestation) did it, too.
ReplyDeleteI'm not trying to make light of Jimmie's eating issues...I just want to let you know that you're not alone in some of the frustration.
With that, we continue to pray for a weaning plan, eating and drinking and comfort for all of your hearts and minds.
GO JIMMIE GO! You are a cutest little man (next to my little men)! You give us hope! GOD IS GOOD!