So tonight Wade and I get to have a sleepover with little Avalee at the hospital. We get to stay in a rather small, but private room for 24 hours to get a little taste for how things will be once we go home.
We are planning on having a party, and getting no sleep--between the eternal beeping of her oxygen monitor, the constant changing of her diaper (she still has terrible diarrhea, poops constantly, and has a terrible rash on her bum), feeding her every three hours, and my pumping every three hours...there is not going to be much time inbetween.
So Ava will be on oxygen until she has corrective heart surgery, which will be in about six months. I dont know how I am going to make it through; just think of an alarm clock going off randomly all day and all night, but this alarm clock is hooked up to your child, and affects her health...if the oxygen gets too low, she turns purple, and doesnt get enough oxygen to her brain, and if the oxygen levels get too high, her already strained heart has to pump against more pressure. Wish us luck.
This little sleep over is also going to be a kind of trial run for Ava to see if she can orally take all her food. Having different nurses all the time is kind of problematic when she is trying to learn how to take a bottle, so we are going to try to provide a little consistency to see if that will help her valiant efforts. There is talk that if she isnt able to orally take her food, then we will be looking at some kind of a tube feeding system for when we go home. So needless to say, we hope that her little body can manage this trial run okay.
She is gaining weight though, which is great; she is now a few grams within four pounds. We appreciate everyone who has been praying and fasting so dilligently for her. I wish that I could talk to and see more of you, all the people who support us and love us, but until we can do that, know that we really appreciate all of your efforts to help our family.
It is funny how one minute I can feel completely content with the situation, and a few minutes later feel overwhelmed...Just thinking about the demands that are going to be on our family, and the wondering why this poor little girl has to endure so many things, and the feeling of being so young and unprepared for this experience has been a trial of faith.
But then in some ways, it doesnt really seem like a test of faith at all, because it feels like God is right beside me, and, if I remember, has been from the beginning of this. When we first learned that she had a heart problem at around 28 weeks, I felt a prompting that told me to buckle myself in, and prepare for something hard ahead. It was a reassuring, though very somber feeling, and it did not try to sugar coat what was going to be ahead. I have felt that same feeling come back again and again.
It reminds me of when I was a little girl and split my head open on the food storage room door. Dad took me to go get it sewed up and he held my hand as the pain got worse and worse from the doctor stitching it up. I just clenched his hand and held on. Dad didnt try to minimize the pain by telling me it would go away or anything, he just let me clench his hand, and he was there for whatever I needed. I feel like my Heavenly Father is there in that same way, not pretending like this experience is going to be easy, and not trying to minimize it, but always staying by my side for anything that I might need. How I have appreciated that feeling, though I have not always appreciated the painful experience accompanying it. It's funny how I feel as vulnerable and young as i did getting my head stitched up as a small girl; I need that hand to hold, and that strength standing beside me.
I have had a lot of ponderings as I have gone through this experience with Wade and Avalee, and all of you who have supported us. Though this is enough ponderings for now, feel warned that this blog may be filled with all my thoughts and questions as we continue this difficult, but equally sweet, journey.
Love to you all. I wish I could spend time with each one of you, but until then, know of our love.