As some of you know, Tobacco Brunette (TB), who is becoming rather dear to me, is in the same predicament I am in terms of having a young son diagnosed with ToF. I've been religiously following TB's blog as it gives me a possible glimpse into what the future may hold for Little Husband. TB and I also correspond via email several times per week and, among other things, we share the results of our baby's doctor's visits. Until yesterday, everything was going well for both of us. Then TB's son had a "tet spell" and everything changed.
TB's son is slated for surgery within the next few weeks. Please, please say a prayer for her sweet, little baby boy Owen. As common as the surgery is, no one can ever predict what the outcome will be, and that's what strikes the most fear in her (and my) heart. The thought that we may never see our little men smile and coo and sleep and breathe those sweet baby breaths is often too much to bear. I handle it by keeping those thoughts to myself or pushing them away. But still, they live with me every day--make no mistake about that. When I comfort Little Husband in the early morning hours with the only illumination being the moon, I'm am wondering if our nights together are numbered. This is the greatest fear I have ever known: losing someone I love as much as I love my little baby. That shouldn't be discounted.
After reading about TB's experience yesterday with Owen and his tet spell, I had a minor breakdown. Fortunately, Husband is the calm one so he comforted me back to sanity. Owen wasn't supposed to get sick, you see. Owen's test results are great--near perfect. Just Like Little Husband's. Owen shows no signs of turning blue, just like Little Husband. Owen was simply supposed to have surgery with no outward signs of having a congenital heart defect.
At least, that's what I told myself. Owen's hospitalization smacked some sense into me.
Today I took action! I learned all about what to do during a tet spell (net result: call 911! No ER heroics for me, I'll leave that to the experts). Husband and I signed up for a CPR course. We happened to have an appointment with the pediatric cardiologist and we peppered him with all sorts of questions. Even though Little Husbands blood-oxygen levels were at 100% (100%!), I outright told the cardiologist that I no longer trust those numbers based on what happened to TB.
Side bar: our cardiologist was blown away that I have a friend whose son is only three weeks older than LH and has the same diagnosis. As a result, he took my fears seriously and never once tried to down play my concerns due to the fact that Little Husband's test results are looking so good.
Unfortunately, today's echo cardiogram revealed that Little Husband has a muscle in his heart that is thickening. One month ago it wasn't so bad, in fact, last month the cardiologist thought we might get lucky and never see a tet spell. Today he had to retract that statement.
The mood around our house this afternoon has been rather somber. I've been piddling around, doing housework and watching Little Husband sleep. Husband had to go back to the office. Both of us got online and performed a little research on surgeons and pediatric heart hospitals. What we found is very encouraging. In fact, inasmuch as one can be excited about open heart surgery, I feel that we are in a very fortunate place. The hospital that our cardiologist recommends, Texas Children's Hospital, has been listed as one of the best in US News and World Report. The surgeon that our cardiologist promised to put us in contact with happens to be the one featured in the article.
For the longest time I was having trouble conjuring up images of Little Husband post surgery. I tried so hard to imagine him taking his first steps or getting on the bus to kindergarten but my brain simply would not produce the images. I began to fear (greatly) that this meant that these things were never going to happen. Today, after this simple set of coincidences, I have a little hope and I'm clinging to it.
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4 comments:
I know there was some talk about DC's Children's Hospital and the family I work for had an awesome experience with it FYI (the little girl had problems with the bones in her skull not fusing properly and had to have surgery on her head when she was 2. They found the DC Children's Hospital to be the best pick in comparison to INOVA and Hopkins, but obviously that's here). Being the psychologist in training that I am, I know what you're talking about with being unable to see into the future and being afraid of what that means. Sometimes our other fears block that ability so in and of itself it means nothing. I can't see myself graduating from grad school, but I will, and I just have to take it day by day, class by class. So, I think the key is not necessarily looking to the future (because, let's face it, in this day and age even with the technology we have nothing is certain for anyone, even healthy people), but to stay positive and only worry about what that day has to hold. "Yesterday's history, tomorrow's a mystery, but today is a gift, that's why they call it the present."
I definitely think Rose is right. We have to fear. If we don't fear we do stupid things. But, since the future with LH's condition is out of your control--try to replace those thoughts with the happy ones you know right now and the moments you can control. Think about that beautiful, happy, cooing bundle of preciousness!
we talked about this a lot the other night, so you've already gotten my input on it. but also know that next time you have a breakdown, please call me. even if all you do is blubber on the phone while i say "i know honey...shhhhshhhh...", that's fine. i dont want you to feel like you're alone in the house with just a baby and nobody to talk to or cry with. or call and i'll come over. ok?
love you girl. keep us updated on Owen.
Thanks, girls. Y'all made me feel so much better with your sweet advice...
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