Transplant 2- Honoring her donor, and her Aunt Ju

Scince I made my last post, a few people have asked me exaclty how much sleep we're getting now, 7, 8 hours? I WISH!! I guess I should've started with saying that we were getting about 2 hours and now we're getting maybe 4 or 5. Except the last two nights since I posted this she's decided to go back to fussing most of the night and so it's been more like 2 or 3 total. I wish these were at least 2 or 3 solid hours, but that's 2 or 3 total when all the 'naps' are put together. I still have no clue how we're doing it, I used to require about 9 hrs at night. We are being incredibly blessed is all I can come up with because somehow we are functioning through each day. Somedays more than others. The last two days I think I've felt more tired than I ever have. Bela hasn't been tolerating her night time feeds very well anymore, and somewhere around 11 or 12 is when it usually all starts. She fusses on and off allllll night long until I finally decide to turn her feeds off, or she decides that she's done trying to sleep when she feels so yucky and full, usually around 5. It really has been sooo frusterating latley, because we're giving her continuous food into her NG tube, but it just seems to be too dense or too much because she throws up every night around 3 times and we basically just wait until she does for her to feel releif. She'll sleep for about 20 minutes after she throws up and then it all starts over again. It seems so dumb to just keep pumping it in her then wait for her to throw up because we know it's too much! But what is more frusterating is that we finally figured out she needs that much to grow! She needs more than she can really tolerate. She was actually down an ounce again yesterday (bc of two terrible nights), and so we're now re-evaluating (yet again) to try to figure out how to get all of it in her without making her so upset. Just when I though we had finally got it figured out! SHe is sleeping much better during the day because her nights are so bad...a vicous cycle. Too bad Benson sleeps amazing at night, and not so good during the day. Oh well... So we'll keep trying to get the weight on her. I don't like that it's already June...surgery is coming up way to fast!! We're trying to work with her on the bottle because I want this dumb tube out of her nose for sure after her next surgery.. I would love it out sooner, but that's probably wishful thinking. She is taking the bottle great though, so if I'm able to get all that she needs in her through the bottle, we can get it out. HEr calorie needs will decrease after her next surgery, so it will be a definate possiblity then, and I'm going to do everything I can to get it out of her. I can't imagine having something shoved up my nose and down my throat all the time. Yesterday she threw up some blood (about gave me a heart attack), but luckily the nurse was here and called her dr. who said it was most likely due to her tummy being irritated from long term NG use. So sad! But I was soo glad it wasn't something more serious. It scared the heck out of me.
Other than all her feeding issues, she is so wonderful. I wish that I could just enjoy my baby more without ALWAYS having something to worry about. THat is the hardest part about all this..the contant worry. I sometimes have to remind myself that she is still a baby, not just a baby with a heart defect, and to just slow down and take time to just talk and play with her and enjoy her more. I used to be a failry easy going person, but not so much anymore. Can you blame me though? :) Hopefully we'll all be in a better place in a couple years and we can look back on this time and just be grateful we got through it.
On an extremely happy note...my mom is coming tomorrow to stay all week!!! Hopefully that'll mean some more sleep! I wouldn't be able to do this without my two incredible mothers and their help...