Several topics I wanted to update you on.
First, Oakes is doing great. Yesterday's surgery went well. The trach was placed, Pheresis line removed, and they took a little peek at his airway. There is some narrowing of his trachea and some scar tissue on the left lung where his tissue meets the donor tissue, but nothing alarming. After about two hours he came out of the OR with no tape or tubes covering his sweet little face, a site we have not seen since he was about 2 months old. I know I am biased, but I have to share my opinion that Oakes is just a beautiful baby. He reminds me SO much of Isla, but even more, I think he looks just like his handsome Pappa.
In the last 24 hours, Oakes has done just great. His team has successfully weaned his vent significantly, he has been started on feeds again, he has been pretty heavily sedated in order to keep him still and manage any discomfort, and beside him just looking cuter than ever, his numbers are all really good too. Radiation is still on hold, and actually I heard today that Oakes' white blood count has jumped up a bit from last week, which is great news. One of the first things I noticed when I got into Oakes' room this morning is that tooth #3 has made an appearance! Of course a picture will be posted as soon as I can get one.
So, as far as Oakes goes, this week has really been great. I am staying as focused as I can on my little guy, but this week has been hard - knowing that Elizabeth is no longer with us, and that her parents, our friends are hurting. Our friendship was no secret in the CICU, all of the docs and nurses knew we were connected so it has been comforting how many people have come to visit with me, check in on me and offer kind words. On Monday morning, I had to kind of drag myself up to the hospital. I was so sad, and was not looking forward to "Elizabeth's room" being empty. As I walked in, Dr. Doctor followed me into Oakes' room and said, "We need to talk." My stomach just sank deeper than it already was. I was prepared for bad news, or grim news, but instead Dr. Doctor was there to give me a little pep talk. He shared that he believed that Oakes' path is going to be a different path than Elizabeth's. He acknowledged that Oakes has impressed everyone, and has pulled through some scary stuff, and he wanted Greg and I to know how very hopeful he was for us and for Oakes. He then proceeded to share his ideas that we might get Oakes home in several weeks. So, I am reminding myself of my post from a couple of weeks ago about staying in the moment, being calm, and celebrating the little steps. I am going to keep doing that, I'm going to focus on helping Oakes to recover, and I am going to continue to pray like crazy. Prayers asking for more good stuff, prayers for continued strength and healing, and lots and lots of prayers of thanks.
Last, I wanted to share the obituary for sweet Elizabeth. I am just SO touched in so many ways by it, and I think you will be too. But first, I have to elaborate on the idea that Greg shared earlier that Chrissy and I would imagine our kids playing together, running through meadows and having fun. To do this, I have to back up. Oakes was recovering from his first surgery in the CICU when Elizabeth was brought up to the floor. It was impossible to miss the fact that a little girl had joined us on the floor. When glancing in the direction of her room you just couldn't escape all of the PINK in her room. I first met Dave, Elizabeth Dad one night when we both were waiting for an elevator to head home. At the end of brief but intense conversation Dave was shaking his head, saying, "You have got to meet my wife, Chrissy" and I was shaking my head saying, "You have got to meet my husband, Greg!" When I met Chrissy, knowing very little about her I could not help but to give her a huge hug. From that day on, we always had plenty to talk about. We always had a hug or smile to give, we always wanted to know how each others child was doing, what was the latest, what were the docs saying, how were their numbers and very often we had tears in our eyes as we shared our concerns, our worries and even our good updates. One conversation we had was one where we discovered that we were telling our babies the same thing. When they were upset, or uncomfortable, going into a surgery or even when we were just leaving for the night, we were both telling our little ones to "go away", "get outta here" and to go to a happy place. As soon as we discovered this we agreed that they should travel together. We sent them around the world and back. They went to Paris, Maui, Time Square, and the San Diego Zoo to name a few. Last Saturday they were in Figi swimming with marine life. We joked that they should be chaperoned, and in a short time, Chrissy started calling Oakes her son-in-law. Like myself, Chrissy has been desperately hanging onto any and all hope. We have both been supporting and loving each other, and in turn hoping that our children are doing the same. I haven't talked to Chrissy to ask, but I think it is safe to say that we are still hoping for that today.
Elizabeth Ann Butz passed away peacefully in the loving arms of her parents on September 4, 2011. Elizabeth was born on April 19, 2011. During her four and a half beautiful months with us she touched many lives and was loved deeply by family and friends.
Elizabeth Ann is the daughter of Dave and Chrissy Butz. Elizabeth is survived by her twin sister Margaret Lynne (Maggie); her paternal grandparents Dave andCandyce Butz; her maternal grandparents, Michael and Lynne Morrow and Stephen and Patricia Pranka; her uncle Michael Pranka, uncle Jason Butz and auntKiffin Butz. And her precious love, Oakes. She joins her best friends Gert, Hunter, Noah, Phoebe and Ronan in heaven.
The family would like to thank the nurses, doctors and other staff at St. Louis Children's Hospital with a special thank you to Becky Ortyl, Dr. Alan Doctor, Dr.Avihu Gazit, Dr. Charles Huddleston, Mark Shepard and nurses Bev, Sarah and Emma. And Dr. Rajit Basu.
In lieu of flowers, the family would be honored to have you support the Mighty Oakes Foundation found at www.mightyoakes.org or the St. Louis Children's Hospital foundation at www.stlouischildrens.org.
A memorial service will be held at 10:30 a.m. Saturday, September 10, 2011 at Webster Groves Presbyterian Church, 45 W. Lockwood Ave., Webster Groves, MO 63119 with Reverend Dr. John Carothers officiating. A reception will follow. All are welcome. Please feel free to wear pink.