This one is definitely getting framed!
Jack had surgery today to have a G tube placed in his stomach. Feeding is going to take some time. He has the hang of it but can't take near the volume he needs. This will get us home hopefully the end of this week or the beginning of the following week. There he can finish his healing and recovery, and hopefully will take off with the bottle feeds. I know this surgery is painful by his pitiful cries and his overall appearance. They say he should be feeling better in 24 hours.
The memories that I have here are incredible. They are both good and bad. Most of the time I would want to forget about bad things that have happened, but not this time. I want to remember what made my family the way we are. The amazing battle that our son over came. The day we found out he had downs syndrome, because it was hard at the time, and i know it will be a blessing. The experience that made my husband and I closer and love each other more than words could express. Leaving MUSC will be bitter sweet. I am thrilled about going home and it doesn't even feel like it is really going to happen.
There are so many things we will miss. The people. The doctors, nurses and staff have been amazing from labor, delivery, PCICU to 8D. I think I will be lonely at home not having all the nurses to talk to. Sometimes I feel I distract them from their jobs because I talk so much. Many of them have become our friends. I know Jackson will miss the ice machine on 8D. We will miss hearing the phrase "I know, right", our view of the children's atrium, the frozen yogurt and more. I know a lot of that doesn't make sense, but they are all part of our memories.
Thinking back to the beginning of my pregnancy, I remember I often prayed for a "perfect" baby. I realize now "perfect" is so relative. I can also honestly say during this experience we have all had a moment when we have been angry with God about what has happened to Jack. Recently I had gotten away from the hospital to run a few errands. Listening to the radio, a Garth Brooks song came on that brought tears to my eyes and made me realize that what doesn't make sense now, will one day.
"Sometimes I thank God for unanswered prayers. Remember when you're talkin' to the man upstairs. That just because he doesn't answer doesn't mean he don't care. Some of God's greatest gifts are unanswered prayers."
And what a gift we have received.
Yes, his onesie says I am Captain Jack. Charleston appropriate, right? Specially ordered for him by Bodie. She also sent him one that says "my mom is a pirate". Arrrggg! :)