Ella sustained her stats throughout the day. When I went to visit her, her blood gases and saturations were good.
Also, they began feeding her the small amounts of my milk throughout the day and she tolerated it just fine. Keep in mind that since Ella has not had to digest any food up to this point, her intestines are at risk of not working. In other words, it is almost like they can atrophy because they are not being used. So the purpose of supplying the smallest amount of my milk was to entice the cells in her intestines that there will be real food coming at some point! In any case, it is a good sign that she tolerated it well.
Visiting her today and tonight was rough. We did have several concerns and the nursing staff was not effective in answering our questions. Unfortunately, that tends to make things worse and makes us wish that we had a direct line to Dr. Kays, so he could alleviate our concerns.
Even though Ella’s stats are good, her swelling has not reduced. So far, it doesn’t seem like the invasive SVC procedure has made much of a difference. This means that there is a good chance that the procedure will need to be repeated. In addition, her head swelling was much worse tonight versus 24 hours ago.
On top of all of that, Ella just seemed very out of it. We are not sure if it is because she was just real tired or if it was an indication of anything. On Monday morning before the procedure, you would talk to her and she would look around and respond to your voice. She hasn’t been doing that since the procedure yesterday.
When you see these types of side effects and the SVC procedure is not something that this hospital or staff has a lot of expereince treating, it starts to get the best of you!
Honestly, it is probably nothing. Our perception is that she has worsened, but I think we are just nervous about everything that she has been enduring.
If you would, please join us in praying for our little girl: that we will see fluid reduction from her chest tubes, her overall swelling would reduce significantly(especially her head), and her superior vena cava issue would resolve itself. Also, that tomorrow will be a better day for her parents!
As we prepare for a night’s sleep, we rest in His promise:
Isaiah 40:31: but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Thanks for all the support from everyone. Good night!