I've been wanting to write and update since our appt on Monday, but just haven't found the time. It's early now and I'll try to catch up on what's going on around here.
We visited the cardiologist on Monday to do a weight check. We had tried VERY hard over the week-end to get as much food into Eliana as possible. I had questioned before whether we had tried hard enough and feel confident in saying this time that we definitely had done all that could. We managed 20 oz on one day and it was lower on the others though not too much. I was feeling optimistic that we had accomplished what we needed to do. We were so
disappointed to see that she had lost weight on Monday!
She was down to 8 lb 3 oz. Then we wondered if this might have been due to the diuretic she was taking. The Dr thought this was possible. In looking at Eliana he was pleased with her response to the meds she is taking. He thought her heart sounded better and the fluid around her lungs seemed better too. That was the good news for the day.
We are to go back to our ped on Thur for another weight check - and then to page our cardiologist with the results as he is out of the office on that day. (Have I mentioned that we are getting really good care?) If she has not done well, then we are to see him again on Friday. It sounds likely at this point that she would be admitted to the hospital for a feeding tube. I had really wanted to avoid this, but it may be what is best for her to gain weight at this point. Our dr tried to assure us that this wouldn't be so bad, but it's still hard to imagine.
The path from here remains unclear - it all really depends on how Eliana is doing with her weight gain. We obviously don't know from day to day what the future holds and this remains a time to just trust and do the best that we can during
each day. If she doesn't do well with her weight gain, the feeding tube is the next step. She may be kept in the hospital with this or we could possibly be trained on how to do this so that we could bring her home (after a stay in the hospital). Our cardiologist thought we were "educable" on this. When Roger asked if we could do anything wrong in inserting the tube we were told that the tube had two places it could go - the stomach or the lungs. Obviously we would want to know we were doing it correctly! How long she has this is again dependant on how she is doing. If well, then that could postpone her surgery. If not, she is likely to have surgery soon. The cardiologist thought it probable that based on what he has seen thus far, that she would be having surgery next month (Feb).
It is hard to even think about. I've looked at some photos of babies after surgery and it's hard to imagine my little girl having to go through all of this. I know it's inevitable, but I still don't like to think about it. We were hoping to have some more time for her to grow and get stronger before having surgery. Also to get out of RSV season to help her as well. It looks like this may not be the case though.
I'm praying that whatever is best is the course that will be taken. Part of me thinks that getting the surgery behind us will help us to move forward without the questions and limitations of her heart. The other part of me wants to wait if her being bigger, stronger would help. Ultimately, it is out of my control. Learning to give it all up - control - is a tough lesson for me.
As I'm typing all of this, it seems pretty "factual" and that's probably because I'm so very tired! Four hours of sleep - and hoping for more - just isn't enough.
I'm still pumping as now I'm wondering if I can just hold on a little longer if surgery is sooner. I really don't know. Im not sure I'd have enough milk at this point anyway or even if my supply can be increased at this point so far from delivery. *sigh* Nothing has been easy this go around. Nothing. I'm soooo very thankful for the support of friends and family.
Thank you for keeping us in your prayers!
Leslie
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