Well, we visited the ped this morning. She wasn't seeing patients today, but when I had her paged she called back to have us meet her at the office. I really wanted to see this ped as she has seen us weekly and knows Eliana - her history, her struggles, etc. I am so thankful to have someone that is so commited to helping that she was willing to come in to see us.
Eliana has lost 2 ounces in the last 2 days. My sweet little baby girl. I tried to feed her while we were there - and she would only take a small amount as has been her pattern for the last 48 hours. She was awake, but just wouldn't eat. The ped thinks she is just worn out. Too tired to make the effort to eat. Poor sweet little girl.
Our ped called our cardiologist and they agreed that the best course of action would be to get an NG tube for the short run in order to help her gain some weight so that she could handle a surgery next week to insert a G tube. I had really not wanted to go this route. I had high hopes because she really does have a good strong suck - when she is not in heart failure. I'm hoping this will be a quick way for her to get some help and that she will be able to return to feeding by bottle soon!
We are meeting with the cardiologist tomorrow at 11am. After that, Eliana will be admitted to the hospital for her NG tube. We are to be prepared to stay overnight - and hopefully be allowed to come home the following day.
My head is swimming. I am so very tired that I am not feeling so overwhelmed - or maybe it's because so many precious people are praying for us!!! I wasn't able to go to sleep last night until about 5:30am because I was so worried about Eliana. I was up again about 8am and have been going ever since. I do hope to get a nap sometime - maybe when I finish updating/pumping.
I know that this is what is best for her. Still hard to deal with the feelings that accompany having my little baby needing to return to the hospital. I am much more comfortable with the idea of a G tube after the responses from others with experience. I am hoping that having the NG tube a short time will cause no harm to Eliana and her speech/oral skills.
ETA: Forgot to mention the good news. Eliana's heart is doing well. The meds are still working as they should and her heart rate is good. Her liver also looks good. I'm thankful that she isn't in distress in this area.
Please keep praying for our precious daughter and our family. We are in the midst of trying to sort through what we will be doing tomorrow ... child care, when and how much time Roger will be with Eliana and I and any other misc details. Please pray for wisdom for Roger and I as we make decisions. Please pray for peace for all of us and for the chaotic nature of the last 7 weeks to be something my children are able to handle with grace and love. Pray that these trying times will draw my family closer to God and closer to each other. Obviously pray for our sweet Eliana's health.
Will continue to update as I can.
The mere edges of His ways
1 day ago