Today I am writing from a Ronald Macdonald house, a place I never imagined I would be connected with in any way, let alone live in. Last week I wrote a tiny bit about Cassandra’s delivery and the hard work it took to bring little Lily into the world. We had no idea at that point that that would be only the beginning of Lily’s struggles. Now she is in the newborn intensive care unit of a major hospital connected to tubes and wires, fighting to breathe.
On the day of Lily’s birth, Cassandra hardly got to hold her at all before they whisked Lily away to be treated for aspirating meconium, and she hasn’t held her since. In fact, we are hardly allowed to touch Lily. Two days ago Lily was life flighted from the local hospital in which she began her life to the children’s hospital she is in now. Ever since she has been here, she is gradually improving, but has a long fight ahead of her. I know that through the faith and prayers of everyone who loves her, Heavenly Father is blessing her at every turn.
Cassandra was able to fly with Lily in the helicopter and Emerson drove. They came here not knowing where they would stay, and probably not really thinking or caring about it. All concern was for Lily. How grateful I am for the amazing Ronald MacDonald house who are housing and feeding our kids at such a negligible cost. As I got ready to fly out yesterday, I had no idea where I would stay, either, till Cassandra told us that I could stay at the RMH, too. I am amazed and humbly grateful for such assistance.
I got to see my little grand baby for the first time last night at about 7:00. She is absolutely beautiful. Eight pounds and six ounces at birth, with black wavy hair and unbelievably long eyelashes, Lily would be the picture of health if not for tubes and wires and the sedation that keeps her body still. Instead of lusty cries and hearty appetite for her mother’s milk that we anticipated when Cassandra neared her due date, Lily makes no sound and is fed lipids and sugars through a tube. Instead of having her hands full, Cassandra’s arms are empty. Instead of suckling her baby, Cassandra
pumps by machine, and her milk is mostly discarded. The other hospital would sometimes place a few drops on Lily's mouth so that she could experience the taste of it. I hope they begin doing that here.
Lily has little to comfort her. She can hear us as we speak to her. We think. She can also hold a finger or have a light steady touch on her arm. Sometimes. Also, Lily has her Lovey. Lovey is a little dolly made out of a sock that the other hospital gave to Lily. Cassandra carried Lovey close to her heart until she acquired Cassandra’s smell. Now Lovey lays on Lily’s chest and close to her nose, giving her comfort. We hope. Last night when the nursing team was done doing whatever it is they were doing to her, Lily wasn’t happy. Her mouth was moving a bit, and she was squirming just slightly. We noticed that they had moved Lovey aside to work on Lily and had forgotten to return her. We gently laid Lovey in her proper place and Lily was still again. Touch, sound, and smell. Does Lily really find comfort in these things, or do they only comfort us? We will really never know, I guess.
Our day has consisted of sleeping, eating, driving to the hospital, taking turns seeing Lily, and for Cassandra, lots of breast milk pumping. I’m glad I can be here although I don’t know if it is a comfort to anyone but myself. I try to stay quiet and out of the way and to help in any way I can find to do so. My visit will be ten days of doing this, and there is nowhere on earth I would rather be.