Thoughts from the early morning...

It is 4:30am... I was supposed to get up at 3am to pump. Oh well. It is very difficult getting up in the night for a machine!

Bob and I went to visit Julia last night. Our date nights lately consist of a quick dinner out (strategically choosing a restaurant that is either close or on the way to the hospital) and then a visit to Julia. I am happy to get the time to visit her together, but it's not the "funnest" of dates.

Julia got to move out of the cardiovascular intensive care unit to an intermediate nursery upstairs on the 3rd floor. To quote the song from the Jeffersons, "We're movin' on up!" It is quite the luxury suite! Julia has her own room and it is big! It has a huge bench seat that you can use as a bed if you need to as well as its own private bathroom. But the best part about it is that Julia is doing well enough to be there and out of the CVICU. She is off all IV medications and is tolerating the replacement medications that she takes through her NG tube very well. She is also getting less oxygen through her nose tube. They would like to wean her off air completely. I think the goal is to try to get her to come home in a week.

Despite the really nice room and the fact that she is improving, I find my heart still sad. It is really hard to be separated from my baby. I feel like I am missing out on such critical bonding time when I only get to see her a few hours a day. When I am there, it is really hard to hold her because she is hooked up to so many wires. Last night she was kind of fussy. I wanted to hold her close and walk her around the room to soothe her. But I couldn't. Though the air flow helps her feel better by relieving pressure on her lungs, the prongs in her nose bug her and she is constantly moving her head from side to "shake them off." So it is just difficult to be close and snuggly. She is getting fed breastmilk constantly around the clock through her tube with an IV drip machine. Small amounts of milk flow into her stomach all the time. She is pretty much up to the same quantity of milk as she was eating before going to the hospital. However, I'm scared she is going to forget how to eat with her mouth. Babies CAN forget how to suck and sometimes have to be retrained. Will she even want to try? How is all this hospitalization going to affect Julia's overall development? Because she has Down syndrome, there is already a risk she could never eat on her own, talk, or walk. The thought of that makes me so sad. I am scared for her future. She is doing better but is still struggling in many ways. Things can take a turn and her life could be dramatically shortened. Why her? Why Julia? I struggle to understand what God will teach us through this child having to suffer? We are indeed learning that we can not control the future and that we only have today. Am important lesson, but must it be learned at Julia's expense?

I will pray that I have the faith and faithfulness of Job. I'm sure I will also be tempted to "curse God and die." I am indeed angry that our lives are the way they are. It seems too much for one family to bear. However, I do have a forgiving God that welcomes me as I am and allows me to struggle with my circumstances with Him. I may struggle for the rest of my life.

Lord, please protect and heal Julia. Keep her from too much suffering. She is only a baby. Help her to feel Your love constantly and to feel my love for her even when I am not with her. Protect Mattie from this difficult season. Help protect her from the stress that her parents feel. Help her to have a deep knowing that none of this is her fault. Please bring us closer as a family instead of this tearing us apart. Help prepare our hearts for the challenges that lie ahead as there will be many. However, help us also to have eyes open to see the joys and successes no matter how small. Amen.