Kylea

Some of Noah’s nurses would joke about him having a relationship with a couple of the female roommates he had in the Duke Hospital PICU, mainly those who took up residence in the "backyard" with him. The backyard was a name given to a room behind the rest of the PICU. It was separated from the rest of the PICU and only had room enough for a maximum of four infant beds. Most of the backyard babies ended up being long-term tenants. As Noah spent most of his four month stay in the backyard, we got comfortable there and got to know many of the families of children who stayed in the backyard. In fact, I think all those who Maria stays in contact with had babies in the backyard.

One of the girls that Noah’s nurses would fantasize about him going on to have a relationship with was Kylea. They would say that Kylea would wear the pants in that relationship as she tended to be louder and much more feisty than laid back Noah. I remember the wonderful feeling I had when I heard Kylea whaling shortly after coming off the ventilator, a feat that took Noah at least a month to attain.

Kylea was a few months older than Noah but she wasn’t put on the heart transplant list until after Noah received his new heart. Maria encouraged Kylea’s parents after she was placed on the list by telling them that Noah’s transplant turned out to be one of the greatest miracles bestowed upon us, even though it was one of the scariest things we had been through.

Kylea had to wait longer than Noah for her new heart but she got to leave the hospital more quickly after her transplant. Recently, it was discovered that an infection in her new heart muscles would require her to need another transplant. Her heart failed and she was put on a heart and lung bypass machine . Her heart eventually woke up and did everything it was suppose to. Her other organs appeared to be working fine as well. Kylea would wake up and look around and Tara her mother said she appeared to recognize her. At this time it still wasn't clear if she needed another heart, so on ECMO she would remain. If you know anything about this machine you know that the longer you stay on it the harder it is to come off and it can cause deadly side effects. In Kylea's case it caused her brain to bleed and eventually it caused her to be brain dead.

This night, as I sit tired and sleepless thinking about Kylea, I ask the Lord to care for her, a flower that He plucked from His garden, and display her prominently on the greatest alter so that she may make our heaven more beautiful.

Mabel

Yesterday I got word that one of our friends from the Ronald McDonald House passed on Friday at Duke Hospital where nearly a year and a half ago she received a double lung transplant. The news hit me pretty hard, harder than the losses of a couple other small children whose families we got to know while staying at the Ronald McDonald House. The difference, I think, is that I actually knew Mabel. I frequently ran into her in the kitchen where she would be helping out as her mother cooked for anyone who was hungry. Mabel would often get down off her stool to get down to Autumn’s level to talk to her. Autumn liked her.

Mabel and her family live in South Carolina but they had spent nine months in Durham around the time of her transplant. So, during our tenure in Durham her family sort of served as ambassadors for the Ronald McDonald House whenever they were there. There wasn’t anything they couldn’t help you out with at the House and they knew almost everyone who had been there for a good deal of time.

Another reason that Mabel’s passing hit me hard was because she was a transplant recipient and I don’t know many other transplant recipients besides my son. Although Mabel had a double lung transplant, and not the more frequently performed heart transplant, I connected her with Noah. Noah is doing fine now, but so was Mabel when I last saw her. Her passing just reminded me that transplant recipients are at a higher risk of mortality. That scares me.

Fortunately, this fear doesn’t overpower my optimism that Noah will grow big and strong and go on to do great things in whatever he chooses to do. I must note that Mabel has done great things as well. To quote her father, "She, in her short 18 years touched many people with her courage, her warrior spirit, and with blue eyes and a smile that melted the hardest of hearts."

May Mabel’s courage and spirit live on in those who knew her. And to those who never knew her, you can look forward to meeting her in heaven. That’s her home now.

Autumn’s Potty Training Progress

For the past week Autumn has pooped in the pot at least once a day. Last night she pooped in each of our three toilets (apparently she had been waiting for me to get home before taking care of any business). I took her to the grocery store to get another special doughnut. If she continues to at least make the effort to get to the toilet when she’s got to go for the rest of the weekend, I’d say she will have earned those Dora popsicles which are the next step up from the special doughnut. We’re still having accidents here and there, but I’m extremely proud of how far she has come so quickly with this potty training. Below is a goofy picture Maria took of Autumn riding her big wheel yesterday evening. Enjoy!

Improving Tim Brooks

When Autumn was born I thought that I would learn Spanish. I would learn Spanish to teach Autumn what I knew to give her an edge. Then, maybe someday, we could travel with my in-laws to Mexico and better understand everything. There are numerous other benefits to becoming fluent in another language in today’s world, but mainly I wanted to be a tool to enrich the life of my daughter. I was going to utilize the internet and a couple of free books and I was going to be a self-taught Spanish-speaker. My ambitions pushed my Spanish studies for about a month.

When Noah was born I wanted to better understand the doctors as they explained bodily processes to Maria and I. The whole medical field seemed so awesome to me and Maria was learning the terms and techniques far faster than I. So I made it my new life goal to learn all I could about human anatomy and physiology and medicine. I envisioned my children as becoming scientists in the medical field, growing human hearts from stem cells and whatnot, and I understanding what they were doing. Well, my studies in the medical field fizzled out faster than my Spanish lessons did. There’s a reason that so many of us want to be medical doctors when we’re growing up yet very, very few of us make it there.

Sometime in the two years between Autumn’s and Noah’s birth, I wanted to be good at what I actually do for work, too. I get by in the computer field but I don’t understand a lot of it and I’ve never been very enthusiastic about learning about networks and computing, etc. After realizing how much our society depends on computers, it came to me that I’d need to put in a lot more effort just to be able to stay where I’m at. There is a growing number of people who can do what I do and do it better. Yet I continue to sink further into technical ignorance.

These and other endeavors I’ve jumped into with an all-or-nothing zeal and have wound up quickly quitting and failing by far to meet my expectations. As I consider these failures, I wonder what is wrong with me and can I change. I firmly believe that everyone needs to try to improve themselves and that’s what I’m trying to do. Why can’t I stick with anything? Are my goals too big? Is my attention span too short? Or is it my favorite excuse lately, that I just don’t have the time and energy? Your thoughts are welcomed.