I was just pondering this morning thinking I had nothing to write. Things were seeming calm ... and that is a nice thing at times.
It was a beautiful day here and Roger and the children were outside playing. I had just hooked Eliana up to her feeding tube and was trying to finish up some laundry. She started fussing and I thought she probably just wanted to be held. I decided to let her wait a few moments while I finished sorting some things on the bed. (I was in the same room with her.)
Well, when I went over to see her, I could see her tube was across her face. That happens when she moves around. But this looked different. I could see the tape still on her face ... but wait the tubing was green, not clear. She had pulled her tube out again! And during a feeding no less!!! No wonder she was fussing. The tube was still pumping food onto her (a little) and the bedding!
I had to wonder if she just pulled it out quickly. Did she even realize what she was doing? Then as I started thinking about what had happened, I quickly became very thankful that she had not aspirated any of the food into her lungs! Amd that the tubing had come out completely. Thank you God for watching over my baby when I'm not!
Since she had eaten some by bottle and tube, I decided not to try to reinsert the tube until just before her next feeding. It was nice to see her sweet little face without the bandages/tube for a short while.. The bandages seem to irritate her skin some too. It did fade by the time we were ready to put it on again, but it may be worth looking into other options for her.
Roger came in to help insert the tube. We said a quick prayer (and were joined by some sweet FIAR friends in praying too) and then put the tube in. Thankfully it went in smoothly and easily. Roger commented that I was getting to be "an old pro" at this. Not something I really want to be an old pro at though! I am very thankful that it has gone well both times we've had to do it at home.
So, this last tube lasted for 10 days. That was pretty good. I'm hoping for another 10 days on this one.
We will see the cardiologist on Monday for another heart/weight check. She is seeming a little plumper to me. She is also starting to sweat some. I know that was one of the signs we were to look for of more heart failure. I'm not sure if it's that or just the unusually warm weather we are having. I'm sure we'll find out on Monday.
Eliana is seeming more alert these days. I'm sure the increase in calories/weight is helping a lot! She is even fussing more - which is unusual for her. She is also "talking" and smiling much more. I love this part!!! Those cute little "baby conversations". Do you know what I mean? When she coos a litlte something and I answer. Then she "says" a little something else and waits for me to respond. So very sweet!
Hoping for a dull (read "calm") day tomorrow! And if not, that God will walk with us through the tough spots! He is faithful to be with us!
The mere edges of His ways
1 day ago