Home of the Four Trans

Nathan is recovering from his sickness…cold? flu? I’m not sure. He had a fever for 5 days that finally subsided, and continues to have a runny nose and coughs. He desperately wants Mommy and Daddy to console him, so we do, but only one at a time. With Justin sharing the same house and being so fragile, we had to be extra careful in handling him and Nathan at the same time. So, it goes something like this: play with Nathan, hug him, carry him, Justin cries, Mommy changes shirt, rub arms and chest down with Pampers Clean ‘n Go pre-moisten cloths, wash hands, rub Purrell hand sanitizer, pick up Justin, feed Justin, Nathan cries, Daddy runs in to carry him, Nathan cries, “I want Mommy!”, Mommy rushes over, Daddy changes his shirt, wash down with cloths, wash hands, rub Purrell, ready to pick up Justin, then Nathan changes his mind and cries, “I want Daddy!”, Mommy changes…and so on and on it goes.

Justin went to see his cardiologist, Dr. Michael Rebolledo, today. He officially weighs in at 9lbs 2oz and measures 22.5 inches in length. Breastmilk seems to be agreeing with him, as you can see with his chubby cheeks, arms, and thighs. As expected, I showed up with a list of questions and concerns I’ve noticed in the last two weeks. The questions mainly revolved around Justin’s breathing (sometimes rapid) and sweating (often excessive) issues, his swollen scrotum I discovered the other day (may be hydrocele–from abdominal fluid build up. More on this later), how long I can feed him breastmilk (as long as possible, we hope. Complications from surgeries may result in him having to go on a low-fat diet, which is not ideal), the unclipped stiches from one of incisions (need to follow up with Dr. Stein, the pediatric surgeon), and most important of all…when I can start taking him out to explore the world!

Interestingly enough, the same man that told me to limit visitors the first 3 months of life is now approving for me to take Justin out to the mall, restaurant, and supermarket. I guess he could sense that I was going a little crazy from being cooped up for the past month and went on to say, “We are past that danger point,” and pauses to look at me from the corner of his eye to see my reaction. I think the look I had on my face was one of…well, I don’t know what look I had. But, he followed with, “Is that, OK?” Umm…I thought I was asking that question?

Me: “Well, it is the cold and flu season.”

Dr.: “That’s true…but just use your common sense and don’t let strangers or sick people touch him.”

Me: (still not getting it…what is common sense, and how can I avoid people and their germs when I go out? Germs are everywhere, people breathe out germs…) “I don’t want people breathing on him”

Dr.: (not understanding what I wanted him to say)

Me: “I guess I just want someone to tell me it’s OK to take him out, but it’s me. I need to get over the anxiety of exposing him to the world.”

Dr.: “Well, where do you want to take him”

Me: “Where there are no people”

Dr: “You know what? It’s OK…Let’s remember not to treat him like Bubble Boy.”

All: (laugh)

He’s more worried of me exposing Justin to other children as they carry the most contagious germs.

The meeting continued on a more serious note where he mentioned that Justin’s echocardiogram looked “good” (I wondered why not excellent), and he went on to say that there is a mild to moderate leakage in his common valve which will improve after the Glenn Procedure (second open heart surgery).

“Could it ever be fixed?”, I wondered outloud.

“This is the anatomy he was born with and his body just has to work with it. There is no procedure to fix a leaking valve.”

I feel my eyes burn and starting to tear in fear of losing my baby. I look away to Justin so that the doctor wouldn’t see, but I knew he knew. I bravely looked back in his face to expose my weakness and asked, “So, what will happen when it doesn’t work anymore, will he need a heart transplant?”

He looks away momentarily to avoid my tears, I assume, while saying “We don’t have a crystal ball…”

“No one does,” I interrupted him, realizing that it was foolish of me to ask in the first place. “We just have to take it one day at a time…”

“That’s right,” he says.

“But he’s doing good,” lightening up, realizing that, today, I still have my baby.

“He’s doing very good. You’re both doing a great job.”

The tear fades and I smile. We are doing a good job.

This man is an amazing doctor. I am truly grateful for having crossed paths with him. He’s absolutely straightforward with me, but always trying to tailor his answers to my unsaid expectations. He never makes me feel bad for over-worrying (is there such a thing?).

So, with a light heart, Loi and I stopped by Panera’s for lunch after the meeting, and I bravely took Justin for a stroll in his stroller around the shopping complex, where (gasp!) there are people, while we waited for food. I still don’t know about being in an enclosed space with so many people…I do not dare venture into that territory anytime soon with Justin, no matter what the medical professional says! But, after the meeting, my brain is slowly rewiring to see that it’s OK to have visitors once in awhile…just not too many people at once, and no sickies, and no kids. I’m trying to let go a little…It’s just so difficult because if anything does happen to him, I’ll bear all the guilt and blame…Who says being a Mom is easy?

“I don’t look at his…thing!”

This is Loi’s reaction after I asked him if he noticed that Justin’s scrotum looked swollen the entire day that he was with him last weekend. It’s not a pretty job, but somebody’s gotta do it. I notice and inspect everything on my little son’s body so to recognize any changes that may be alarming. The swollen scrotum thing has not returned…but if it does, I will have to report it to his pediatrician to monitor it.

Remember that there’s always today because you’ll never know what tomorrow will bring.

This entry was posted on Wednesday, October 17th, 2007 at 2:35 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.