I typically use Nathaniel's quarterly GI appointment as a reason to write about his progress transitioning from g-tube to oral feeding. I skipped writing about April's appointment because there was nothing spectacular to share.  Nathaniel's extended PICU at the end of February required us to return to full g-tube feeds. He lost two pounds while sick and had no desire to eat orally when discharged. I write a bit about that recovery here.

I probably should have written about feeding through that season. The ebb and flow between success with oral feeding and relying on the g-tube has been very much a part of the transition.

"Do you hold him every time he receives a g-tube feed like breastfeeding an infant?" asked my friend, Kelly three months after we brought Nathaniel home.

Her question awakened a maternal instinct I had known five other times, but had not applied to Nathaniel. No, I thought to myself, but was hesitant to admit. Feeding Nathaniel involved a plastic button inserted through a hole into his stomach, a whirling pump hung on an IV pole, and a short tube connecting the two which delivered warmed formula at regular intervals. Feeding Nathaniel was dictated by a doctor; it was supervised and charted by a home health nurse. Feeding Nathaniel was a medical treatment.

At the time, Nathaniel was eleven months old. We had made the decision to feed Nathaniel in a high chair at a family meal as often as his feeding schedule allowed. Other feeds were usually given in his crib. Hours after Kelly's question, I settled into a rocking chair in his room and held him for the duration of his hour and a half g-tube feed; a mother's nurture and intuition was added to Nathaniel's feeding plan. 

My granddaughter can roll over. She did it the first time when her Nana, my son-in-law's mother, was taking care of her. My daughter called me to share the information excitedly later that day, "Blaise can roll over! Well... nobody actually saw her do it, but Jan laid her down on her back and went to heat her bottle, and Blaise was on her stomach when Jan came back."

I am jealous. Not because the other grandmother witnessed this milestone. Rather, my emotion stems from the contrast I sense in adults' reactions to Blaise and Nathaniel learning new skills.  It only took one time of rolling over for all the adults in Blaise's life, me included, to consider the skill achieved. Blaise CAN roll over. There is an unspoken assumption there - she did it once and we fully expect she will keep doing it. She CAN roll over. It means thinking twice about leaving her on the couch or bed. It means keep dangerous things further away. Once was all it took. 

had a heavy heart Monday evening when I merged from Interstate 74 south to 275 east. I do not need a map to get to our Cincinnati hotel anymore. I know this city well. We walked into the lobby, and Nathaniel started to cry. He was inconsolable through the check in process and worse when we got to the room. He stood frozen halfway between the bed and the door, held his trach and cried. I had to wipe tears too. Everything about arriving in southern Ohio for another group of appointments felt hard and heavy and sad to both of us. We've done this a lot in the last year. Many of the visits produced physical pain and difficult news. Neither of us wanted to be here.

In the process of settling into the room, Nathaniel's g-button was pulled out. My twelve-year-old niece was in St. Louis last week for her annual "Camp Rankin" visit, and I asked her parents for a second week so she could be my travel companion. She is brave beyond her years. She responded quickly and confidently to instructions and helped to reinsert the button. Nathaniel laying on the floor without his shirt led to tickling and giggles. Ellie is old enough to be a fantastic mother's helper and young enough to be a buddy to Nathaniel.

Nathaniel saw the hand surgeon today. It has been almost a year since surgery to rotate his right thumb and six months since our last check up. The surgeon is very happy with the placement of the thumb and Nathaniel's ability to do the pincher grasp with the right hand now, something he was not able to do prior to surgery. Nathaniel's right hand will probably not be his dominate hand; we expected that. But surgery has created a very useful support hand.

We have been working on hand strength for months in occupational therapy. Nathaniel struggles to pull up his pants or separate pop beads. The right thumb, while in a good position now, lacks normal muscle structure. Surgery included splicing a muscle on the pinky side of the hand and bringing it over to the thumb to increase muscle support. Nathaniel has a curled pinky finger as a result of relocating the muscle.

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.

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.

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.

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.