Songs to sustain us.

Sunday, January 17, 2010 9:14 AM, EST

DAY 17

This post comes a few hours late as yesterday I was too exhausted to write.

Yeste

rday's inspiration was first written by MG's grandmother, Gram, David's mother, "Amazing Grace--How Sweet the Sound."

We are hoping to sing that phrase again soon and can't forget its sweetness in our first week with Grace as she beat the odds and proved she had the anatomy to work with the machines and continuing gestating. Yesterday morning was more drama to an already bad week. Grace's blood had been desaturating a lot Friday night and Saturday morning. When I arrived at the hospital, the nurses were working with her a lot. Her vent was turned up the highest yet, into 70bpm, more than a baby takes and her oxygen was in the 30%. They did an x-ray too. Turns out the tube had moved again and was now too high (on Thursday it was too low and caused a similar scramble). So later that day, MG had stabilized again when they readjusted the tube. She does really well when it is in exactly the right place, but babies move and tubes which are taped to their faces do too.

The doctor told us that since she is so sensitive to the placement of the tube, it shows how reliant she is on ventilation (as opposed to other forms of additional oxygen, CPAP, etc). She told us what we didn't want to hear, that we need to prepare to have Grace on the ventilator for a long time and then CPAP for longer. This puts Grace at great risk of developing Chronic Lung Disease as the ventilator ages the lungs faster. But she needs to breathe in order to live and to grow and she needs to grow in order to get off the ventilator. We knew this was a likely outcome of our time without fluid and of prematurity, but we still hoped for a better outcome, and the severity of her lung condition will only come out over time. We are taking it two weeks at a time now when it comes to her lungs.

In regards to my amazing image of Grace, I imagine her as a two-year-old. James helps in this regard as he is a happy, energetic little boy with his own personality. It is wonderful to see how much more relaxed and confident he is now that I am off bed rest. He loves the extra play time with me and he has a great time with others. (A special thanks to Charlie that took him to the dinosaur museum yesterday while David and I had to work and visit the hospital!) Two-years of age is the technical time to stop adjusting the developmental expectations of preemies and also when they hope children can outgrow their chronic lung problems, particularly those who've needed extra oxygen support at home.

On the train coming back from our annual MLK, JR weekend "All Family Church" retreat yesterday, I sat with an empty seat across from me. I imagined Margaret Grace sitting across from me with blonde curls and a mischevious smile like her brother. This is the carefree child I pray she will become. The one I can call Maisy or May or Maggie or my little Pearl.

For now, I hope to call her "Amazing Grace--how sweet the sound" again when she weans off the ventilator. Music has been a great solace as it fills the silence when we don't know what to whisper to her. Our favorites have been "Breath on Me, Breath of God" and "Over My Head." I was blessed by our choir to receive a voicemail with them singing 3 beautiful verses of "Over My Head." I needed this for my spirit but also for my mind as I had forgotten all but one of the verses when singing to MG. Now she doesn't have to listen to me on repeat!