June 16 - 19: Scars

Baby Sawyer got to go home! His parents had decided to continue with G-tube feedings and work on oral feedings at home. I ran into them standing in the hospital lobby with their empty baby carseat as I arrived one day, and was overjoyed for them at the same time as I held back a lump in my throat. They have had a long wait, longer than ours, and this is their first baby, and they live in Idaho. How hard!! Our other friends, the baby and his family who have been next door to Audrey the whole time, also got to go home after nearly 8 long months. That was also a bittersweet good-bye. The NICU feels lonelier now, but it was bound to happen. I am so happy for my new friends and look forward to our own homecoming day.

Casting her spells on us in her sleep with Abracadabra hands!

What a busy week! Cub Scout camp, a carnival, visiting cousins, and Father's Day. Saturday morning I went up to the hospital very early and then picked up my mother at the airport, then we came home to catch the end of a church service project--the ward had chosen several families in need of some extra helping hands, and concentrated the efforts of our congregation for that morning, and it is amazing how much they were able to do-- our yard was one of the lucky ones to benefit from their generosity, and it looked so beautiful as mom and I pulled into the driveway. Our kids had gone around the neighborhood with the other children and picked up any trash they could find. After the potluck, we drove to Justin's sister's house in Riverton for a dinner celebrating a visit from their brother Luke and his family. Father's Day we spent the entire day at the hospital, where the kids played at the Forever Young Zone playroom while my mom watched them, each of them getting a turn with Audrey, and for a rare treat Justin and I were both able to be with the baby at the same time for a while. We had a great chat with our primary NP, Ann Camp, who answered a lot of questions that we'd built up. She has been heading up a sub section of the NICU just for long term patients such as Audrey, and has talked with me about it a couple of times. The advantage of us being included in that group would be having fewer nurses rotating in and out, so that hopefully all of them would get to know Audrey better. The disadvantages would be losing our sweet spot by the window and moving to a new room, and probably losing our primary nurses whom I've grown to adore, because certain nurses would be specifically assigned to that group. (Correction--I have since learned that we will not lose our primary nurses, hooray! They are just limited in the number of kids in the group and we are on a waiting list to join, apparently.)

When I brought Eden to visit on Friday, the picc line pump started giving us a message indicating a block somewhere in the line. To my shock, the nurse and I discovered liquid shooting out of it from a microscopic hole in the line-- it was so scary! I was dreading having to have the line replaced, which had been traumatic and scary the first time, but amazingly they were able to repair it with a tiny metal tube slipped over the plastic one. The metal tube is now taped to her arm with the rest of the pic line dressing, but it was a huge relief that it didn't need to be replaced. (The pic line is the intravenous tube that runs up through her arm vein into the large vein adjacent to her heart. They x ray it every week to make sure it is no closer or farther from the heart. Placement is traumatic and infections can be very dangerous, but it saves her from many new pokes and painful peripheral (traditional) IVs for new medications or nutritional supplements.

As I held my sleeping baby early in the morning on Saturday, for some reason a scripture came strongly to my mind. "For God so loved the world that he gave his only begotten...." There was something precious and new in that scripture for me that morning. I don't know if I can quite put it into words, but I was pondering on Audrey's scars, so many and so large it feels, and I wondered if she would ever want cosmetic surgery to remove them, particularly when she is a teen. I had an image of her asking us to instead help other children with that money. And then I felt those words of the verse so strongly, with a change, that in that same sort of loving way, Audrey herself was willing to come to this Earth and accept these scars to her mortal body, to fight to stay here, because she loves the world, because of what it means to be here, the opportunity to learn and to love and to serve and to give.