We don't have much planned and for that I'm thankful. Though honestly, I'm not even able to plan much right now either. I spend hours a day in my room dealing with feedings. I'm feeling discouraged after a hard week-end. I'm not sure where to turn for help.
I called the ped on call yesterday and spoke with a nurse. The dr said it was fine to cut back on the feed amounts. That helps - and it was what I had started doing anyway. I just need more help though. I'm planning to phone the surgeon's nurse today to hopefully get more help.
One of the problems is that the tubing from her button sticks up a couple of inches. I can't put clothing over it (like a onesie) to keep her hands away as I think it would disconnect the tubes or hurt her button. I have a photo, but don't know how to download it. (Will post it later if I can get some help.) This keeps her laying in the crib to get her feeds. I tried putting her upright in a high chair while the stomach settled and before removing the tube connector. She pulled it while she was sitting there and made quite a mess.
ETA: Here are a couple of photos of the g-tube in use. You can see how much the tubing sticks up and why it is a problem to use anywhere but the crib and also how convenient it is to grab!
This one is a close-up.
Please keep praying for us. This is hard and I wish that someone could help me. It feels like a lonely path right now.
Monday - Hoping to get some answers from the surgeon's nurse about an adaptor for her button so that the tubing can lie flat. Maybe too some help with amounts and other problems.
Tuesday - Meeting with feeding therapist. Hopeful here too for some help.
Wednesday - Dental appt for me. I haven;t been in over a year. Probably won't be a fun one. Physical therapy. Her movements have been far less since surgery. She in rolling on her tummy again though not nearly as much. She liked sleeping on her tummy but can't even do that now either due to the tube. She is currently rolled to her side and over as much as she can. Poor sweet baby is trying to adapt.
Thur & Fri - No plans. Rebecca is probably going to be selling bracelets one of these days. We are trying to get caught up with orders and are getting close. Hope to send the rest out this week.
Thank you for your prayers and encouragment. I greatly appreciate both. Sorry that I can't be more encouraging this morning. I need to go spend time in prayer. Will update as I'm able.
With love,
Leslie
Posts
You do not need to worry about encouraging US for Pete's sake! It is our job to be encouraging YOU, so just let that go!
ReplyDeleteMelissa
Praying, dear Leslie, for your heart's hope and refreshment. Praying that our loving heavenly Father pours courage and strength into you throughout these wearisome days:
ReplyDelete"Have you not known? Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
His understanding is unsearchable.
He gives power to the faint
and to him who has no might
He increases strength.
Even youths shall faint and be weary,
and young men shall fall exhausted;
but they who wait for the Lord
shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint."
Isaiah 40:28-31
Sending my love and hugs, sweet friend.
Leslie, I'm praying this morning that the Lord would provide help for you in some way, shape or form. And that the Lord would bring encouragement and joy to your day today!!
ReplyDeleteI am sorry this is such a lonely road right now. You are never alone though. God is with you. I am so glad that you are not trying to put a brave face on for us. We need to know of your struggles, so we can pray accordingly. I hope you get some answers! I know that Kate mentioned they had to use onsies for Noah to keep him from pulling at his tubing. Maybe there is an adapter that will help you with that. What about those cute little "bubble" sunsuits? Does she have anything like that? Can she pull the tube through her clothes? That might be a concern, too.
ReplyDeleteLove, Tami
Hi Leslie,
ReplyDeleteI've been following your journey with Eliana and praying for you along the way. In my life before being a homeschooling SAHM, I used to be an OT in early intervention. The first child I ever worked with was a 3 month old baby boy with DS. His mom and I have remained good friends and I saw them this summer... my "baby" is now 18! Anyway, I've been reading about your struggles with feeding Eliana and with positions you can use. I wonder if you (and/or the EI team working with you) could come up with some kind of adaptation for her high chair or while she maybe semi-reclined in an infant seat... I was thinking in terms of maybe an arched shape board or stiff cardboard that could curve around her belly just above the tube site. I can't tell from the pictures if that would be enough below her arm reach to make a "play surface". You could dangle some toys there to keep her entertained, but she could still be at least partially upright to assist with the settling of her feed; also maybe pad the area that would curve around her torso. Brainstorming adaptations is something I like to do so I just thought I'd pass that idea along. Despite your struggles, it sounds like you are doing an awesome job! I'll keep praying for you! Donna
Still praying for you Leslie! She's a chunky little monkey isn't she!!
ReplyDelete