Monday, March 15, 2010

I haven't updated in a while and since we are back in the hospital and I am having troubles sleeping, I feel a need to be on my lap top to pass time. What better way to pass time on my lap top then to blog about updates and such for those of you who follow Miss Harmonee throughout her sickness. Last Monday at liver clinic daddy got to go with us. Since it was his first time being able to come the transplant team was more then welcoming keeping him up to date and filling him in on the missing/forgotten words I had not relayed to him. Of course it was rather nice having him at the appointment, doing all of the talking and filling the team in on Harmonee's latest. Unfortunately they set a goal for Harm to be eating at least 24 ounces out of 28 ounces a day with micro lipids. Telling a baby with no appetite and no will to eat more then maybe 15 a day after being pushed too... it just doesn't go well. Harmonee ate okay for the first few days, but soon started to vomit everything back up and once again dropped her eating habit to about 7 ounces in a 24 hour period.
Today we came to the ER, where they did some lab work and waiting for a room, while daddy and grandparents got education on the transplant surgery by our lovely coordinator Amy. Finally back in our room we got a lot of breaking news.

News #1: We were given the news that her ultrasound (which they had done while she was in the ER) showed a lot of fluid build up in her little tummy. The doctors decided to drain it in the morning, (which brings us to why we are having to spend the night) Fortunately, Harmonee gets the be the first one to get her little tummy drained right at 8:00 a.m.! No delays. But once again Harmonee will be NPO until after her procedure.

News #2: Harmonee had to have an NG placed. Which for those who don't no it is a feeding tube that goes down through her nose into her tummy. They have been dripping formula since we got to her room. Harmonee looks like she is already starting to feel better getting a little something her tummy along with the formula she does manage to eat by mouth. Which has only been about an ounce so far but with constant formula going into her tummy that is pretty good. This will also help her not being able to eat since she will have gotten plenty to hold her.

News #3: I am a match! I still have a few more tests to go through before we are able to actually do the transplant, but at least there wont be any more waiting! The scare that Dr. Book gave us by telling us that by how sick Harmonee is she would need a transplant within 3 months to prevent a constant stay until a liver became available is over! I am a match and hopefully soon Miss Harmonee wont be just watching Big Sissy Layla play and run around but will soon be crawling after her as fast as she can! The two besties will finally be able to play!

Since my time is running short of sleep and Harmonee will soon be awaken and hungry I should probably try to manage a few minutes of sleep before then. Thank you all so much for your prayers and for following Harmonee and taking the time to learn about her disease and others like hers. God has truly been with us.

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