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
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