Braychan's Story

So now you know The Story. And I'm pleased to know that you do, both because sharing creates healing and awareness, and because that means I am done writing The Story for now. (As I'm certain you can imagine, it extracts every ounce of emotion from me to go through it in detail like that, which is honestly why I don't do it more. Usually I just state that Conal passed away, "We're OK," and move on.) That also means that I can share more with you!

Next, I'd like to tell you Braychan's story. His is a very different one, and not without its setbacks. But I don't think that he has ever even considered anything in his life a setback. I have to confess...He's kinda my hero. I mean, all my kids are, in one way or another. And in no way does that make him perfect (not by a longshot)! But I really admire the kid.

While everything was falling apart with Conal, Braychan was quietly growing stronger.  By four days old he was receiving NG tube feeding (that's the tube that goes through his nose or mouth to his stomach) of my milk. When he was ten days old, they attempted to extubate him (remove the breathing tube that did all the breathing for him). It didn't take, but he was successfully extubated about four days later.

I first held him when he was about ten days old, and I was so freaking terrified. The last time I'd held a baby that tiny...well, you know. And now I was holding this little guy for the exact opposite reason. I remember telling Cheryl the chaplain, "It was a beautifully opposite moment." There is no other way to describe it. And it was, in other ways, completely unlike holding a child.

There are many of you who have lived through a NICU experience, and there are many who have not. If you have not, I will paint a picture. Braychan was 1 lb 14 oz, and the ventilator tubes, pulse ox monitor, cardiopulmonary leads, and miscellaneous tubes etc definitely weighed more than he did. He was so tiny that his body had literally no way to maintain heat (which is why he was in his giraffe bed -- it's a heat/humidity controlled environment!) on his own. So I was wrapped in about four layers of blankets myself, then I had a few on my chest, and he was wrapped in a couple more, and he had a hat on. It *almost* felt like I was holding a full-term kid, because all the blankets and equipment weighed my arms down.

He progressed well, getting numerous transfusions, and then he got a little sick with some sort of infection.  Once that cleared and he still had barely gained any weight, the docs started to wonder if the PDA that he had (very normal at his gestation, usually closes on its own --http://www.nlm.nih.gov/medlineplus/ency/article/001560.htm for more info) was keeping him from growing. They tried waiting it out. They tried using medication to close it. It seemed like it took forever to come to the decision that he needed to have the ligation (surgery).

He had to be transferred to Children's of Seattle for the procedure (Evergreen was just a couple of weeks short of being able to do PDA ligations in-house). It was a bit of an adventure, and I swear I didn't sleep for four days because I wanted to see every second of him improve afterward.  Seeing him back on the ventilator was really hard; it was clear that he "got" it to a certain degree, and he didn't like losing his freedom (those of you who know him now will certainly get a little chuckle from that) that the cannula gave him.

After about four days, we were sent "home" to Evergreen. The absence truly made my heart grow fonder of a place I had grown to love so much already in the previous six weeks. I don't want to go off-topic, so I'll just save that thought for another day, but I will just say that I never felt like Evergreen was an institution. It was more like a sanctuary, a home. And that has a little to do with the structure and a lot to do with the people I met there. And now back to Braychan's story. :)

I went to Ohio for a week to see Cole, whom I hadn't seen since about a week after the boys were born.  While I was gone, B had his very last transfusion, and when I came back he looked like a different kid! His previously brick-red skin was now a mottled-ivory tone much closer to my own. He started to look an awful lot like my dad. He was growing. A lot.

And after that, things started happening, quickly. Before I knew it, he was wearing clothes, and then he was in an open crib, and he was nursing and taking bottles, and generally just acting like a baby! I could even hear his cry! (Did you know that, when they're that tiny, their vocal cords are too small at first to make any noise at all, then it starts to sound like a kitten, then a cat, then a really tiny baby, then a baby?! It's pretty cool!)

One day, one of Braychan's favorite night nurses, Mary, called to say that we'd finally gotten our transport to Denver settled. Remember, we were "stuck" in Seattle, because I delivered there instead of here in Denver. Once he was down to 1/4L of oxygen he was able to fly. We had a long, feisty fight with the insurance company and lost, and then Air Life Denver and PSL decided to split the bill to fly us there, thank goodness.

Once we got to PSL (Presbyterian/St Luke's Hospital in Denver) we were nearly done with the NICU. It was a big, ward-like NICU, with tons of babies crammed in together. The nurses were nice, but stretched beyond their limit. If I wanted to pump my milk, I had to be in a room by myself (not in B's room), which was not great for milk production. PSL is a great hospital if you have nothing to compare it to...but it just wasn't home.

That turned out to be OK, since Braychan was almost done. He still needed some oxygen, but otherwise his apnea and anemia were going away, and all we had to do then was fix his hernias. (Most preemies get them, especially when on oxygen. He had a couple, so they fixed them all right before discharge.) He had to be intubated again, and again it was so hard to watch him fight (mentally) with the idea of being physically restrained. Thank goodness it was only for about four days again, and then we got to go home!

And that's when the fear hit me.

WHAT THE HELL AM I DOING? I'M NOT A NURSE! I DON'T KNOW HOW TO TAKE CARE OF THIS KID! WHAT IF WHAT IF WHAT IF WHAT IF AAAAAAAUGH!

I don't think we were home a full 24 hr before I called our new (never talked to him before the 3am phone call) pediatrician. I'm sure he loved me. Everything went well, I was exhausted, he was fine and still gaining by our appointment the next day, and we were moving right along.

We went through some reflux issues that eventually (at about a year) resolved themselves. We dealt with RSV when he'd been home from the hospital for about two months. (He was admitted for that, for about a week.) We met our incredible pulmonologist, Dr Rusakow, who really helped me to understand the intricacies of Braychan's condition and how we were going to test, wean, and even guess our way through this together. We went to a developmental therapist briefly, who helped Braychan work on his disproportionate upper-body strength. I like to joke that, while the therapy helped, it might have been nice to have made his upper body weaker rather than making his lower body match the unbelievable strength of his trunk. The kid is a beast.

All in all, even considering everything, Braychan has had a reasonably normal post-NICU life. Yes, we still have him on oxygen (when he sleeps), but he barely even notices it (seriously). And we don't even need it when we go to sea level! He is developmentally right-on, and he has never let anything slow him down, even for a second. He has no idea that there is anything different about him.

Now here's where I'm going to get a little squishy-mushy. It just floors me how this kid can come from --literally-- the edge of death to the picture of vitality. He is a true, in-the-flesh miracle. And I think at some level he gets it, because he is so full of joy, and he fights so hard for everything, and giving in or giving up is not an option. He is as laid-back as any kid I've ever seen when it comes to things that will upset a kid, but when it comes time to prove himself he never looks back and just plows into it. He will be the thirteen-year-old who comes to me with the parental waiver for bungee jumping, or whatever the cool, risky thing is then.

And I have decided that, contrary to my "mother's intuition" wisdom, I know that I might as well sign it. He's going to do it anyway. And when he does, the look of pride and joy that I can imagine on his face is enough to convince me right now that he *should* do it.

I just won't be able to watch. :)