My precious little girl has finally gained some weight! She is up to 8 pounds and 10 ounces. Still smaller than that last baby I had (birth weight), but at least we are going in the right direction. When her cardiologist walked in, his first words were "She's at an all-time high". Yes, the feeding tube is working like it should - getting some food into her and allowing her (and her heart) to rest. I have no doubts that this was the best thing for Eliana. I hope and pray that there are no negative consequences of the tube for her, but can definitely see the benefits of it.
Her heart is also doing well. He feels we may be looking at late March or possibly early April for surgery now - unless of course things take a turn for the worst. He wants us to have another weight check this week on Thur and again in another week. We'll be back to see him in 2 weeks. All good news!
We've been dealing with her feeding pump malfunctioning - and trying all sorts of things to fix it. I've pulled out the manual and read on fixing all of the problems. I finally talked with someone at the medical supply company and he suggested it might be the powdered formula settling in the tubing. I did a rinse of the tubing and he was right. This caused me to be concerned about Eliana's tubing and I mentioned this to her cardiologist. He checked out her tube and said it was fine. Whew! (Though if it had to be replaced then I was in a good spot to have it done!)
I keep hearing that it isn't if the tube gets pulled out, it's when. Sigh. I am really hoping to avoid that. I know that I can do it, I just don't want to do it again. I'm not a medical or even a very scientific kind of person. I've learned more about anatomy and medical equipment than I ever wanted to know. You know you'll do anything for your children though!
I even asked my oldest if he would help me if her tube came out - just to hold her head still. He shook his head "no". I emphasized that it would just be holding her still. He again said "no". Then told me that he wasn't comfortable with that. I told him that I wasn't comfortable doing it either! He reminded me that I was the parent and didn't have a choice. True. Guess I'll need to call a friend for help if/when I have to do that. Lucky for me to have a best friend right next door that wouldn't mind helping at all.
Thank you to so many of you that have reached out to encourage me and my family in so many ways. I'm truly touched by your words and know that God is using them to help me. I am blessed in many ways.