Being Brave
I was driving home from grocery store the other night and started to sob. A chest heaving, can not catch your breath sort of sob. Nothing had happened that day or during the shopping trip that warranted tears. As I was leaving the store, Rich and I had exchanged texts. He and Peter were finishing up changing Nathaniel's tracheostomy ties and he was putting Nathaniel to bed. "Will you be home to say goodnight?" The last text from Rich that I read before the convulsive gasps gripped my torso like fingers grip a steering wheel when driving in a torrential rain.
Drink Formula, Eat Banana
We had a very happy little guy at dinner tonight. Nathaniel ate orally. And he loved it.
I had one overriding thought when the team in Cincinnati told me we could start oral feeds - "I want this to be simple." Advocating for someone's safety is hard work. Watchful waiting for three years is stressful. As we find a new routine to life post surgery, we are just beginning to see how much strain our whole family has lived with for a long time. Intense feeding therapy is the last thing I want to start right now.
When Nathaniel discontinued oral feeds, we decided to keep him at the family dinner table. He prayed with us. He listened and participated in our conversations. He received his g-tube feed while we ate. Almost nightly, he would reach for our silverware, plates, and glasses. I broke my heart. Often he ended the meal with someone's fork or spoon in his mouth. We kept his oral stimulation toys and other quiet activities available, but I think holding and pretending to use a utensil, even without food, gave him pleasure and helped him feel like he belonged.
Starting My Second Book
I did something Monday that I have only done once since July 30, 2013. I drove alone with Nathaniel in the van. We went to the park and took a walk. We stopped by Barnes and Noble. We were away from the house for almost two hours.
It felt so good to be out together. Alone. Together.
Laryngotracheal Separation Surgery: Day 6-13
Nathaniel was discharged from Cincinnati Children's on Saturday, February 13. During our visit to Cincinnati last September for the tonsillectomy, we became friends with the crews at the Blue Ash Fire Department. They offered to provide a few dinners for us this trip. A delicious steak dinner, and teddy bear for Nathaniel, was delivered to our hotel Saturday night to celebrate both Valentine's Day and Nathaniel's successful surgery.
Laryngotracheal Separation Surgery - Day 5
Nathaniel has improved by leaps and bounds since the third day post surgery. He's playing with trucks, working on language, and roaming the halls pushing and pulling a wagon. Opps! It is not so quiet around here anymore. We're even back to taking hospital selfies. (Boy, do I have a lot of hospital selfies with this kid.) Tomorrow morning early (6:30) the doctors will change his tracheostomy tube for the first time. If you happen to be a Saturday morning early riser - pray for us. Rich and I both need to be present to learn new care. We will see the incision and new stoma for the first time. We have been through many surgeries as parents; it never gets easy to see a fresh surgical wound on a small child. Afterwards Rich and I will each demonstrate our ability to care for the stoma and change his trach tube. If we do this tomorrow, Nathaniel will be discharge. The discharge is two days earlier than doctors told us to anticipate - a sign of how quickly he has recovered in the last couple days.
Laryngotracheal Separation Surgery - Day 3
There have been a few post surgery issues to cope with that have made recovery not fun. No complications, just not fun. Nathaniel's IV needed restarted; I have decided though I strong description, 'hate' is how I feel about the word occluded when it flashes from an IV machine. Nathaniel has also had some difficulty with voiding and has needed multiple catheterizations. Hopefully these minor issues will continue to improve.
We learned last week that our friend, Maverick, was traveling to Cincinnati and having surgery this week too. Maverick and Nathaniel were featured in a St. Louis Post Dispatch last spring when we met doing trach training for first responders. Maverick's room is four away from Nathaniel's room, and he came by this morning to share some toys. It was good to see Nathaniel smile during the visit.
Laryngotracheal Separation Surgery Day 1
We arrived in Cincinnati yesterday afternoon, and Nathaniel had Laryngotracheal Separation surgery today at Cincinnati Children's Hospital.
An Index to Posts on Nathaniel
Last May our daughter suggested that I put together an list or index for blog posts about Nathaniel. When she tells people that she has seven brothers, that the youngest is three years old and the oldest is thirty-three years old, she gets a lot of questions. She likes to send the curious to my blog for information about Nathaniel.
"But where should they start to read, Mom? And how do they find specific posts?"
I have been working on this list since that conversation. The process of compiling and specifically having it completed today, the second anniversary of Nathaniel's adoption, has been a special gift to myself. It was good to reflect on where we have been, what life has been like for Nathaniel and our family, and how God has been faithful through it all. After spending hours rereading these old posts I must add my AMEN to Jason Johnson's words tucked in a recent blog post, "foster care and adoption are not just the process by which we may change a child’s life but also the means through which God will radically transform ours."
No Talker Outside Today - SNOW!
We are having fun with a snow today! We had a little dusting about a week ago, but today was our first playable snow. This homeschool mom does not allow snow days. I save them up for spring fever days - those first days of spring that are so beautiful one can not possibly stay indoors and do school. So after my normal morning meeting with Josiah, Nathaniel and I headed outdoors.
Nathaniel first insisted on exploring the snow mittenless. That, and our entire outdoor experience, last less than two minutes. That smile faded quickly into many tears. We found a different pair of mittens that he seemed to like better than the first I tried, and went out again. The experience went much better the second time.