9.26.2011
What's In a Costume
When I was little, I loved to dress up. I went through more outfits in a day than most people went through in a week. They were my kots-tooms. And, who am I kidding, I still love to dress up. I loved having formal dances in law school to attend. Or dressing up for Christmas Eve. Even dressing up for an interview was fun. I would put on my power suit and feel invincible. I loved that special clothes could make me feel like a different person. So, it should really come as no surprise that one of my favorite things about having a daughter is getting to dress her up. This love of dress-up makes it all the more surprising that I forgot the one holiday of the year that dressing up is practically mandatory.
As some of you know, this Thursday we will meet with Lil' Bit's heart surgeon to talk about her surgery and get it scheduled. I was talking with a friend of mine about when we were hoping to schedule it, and I said that I was hoping for some time in early November. The response was something like, "That's perfect, because then you get Halloween." Halloween! How on earth had I forgotten Halloween?! Getting to dress my baby up and haul her around to hear oohs and aaahs and get free candy. Somehow, in all of the scheduling and trying hard not to freak out about her surgery, I had forgotten that there were fun moments on the horizon. Still, I didn't want to buy her a costume. Afterall, we still don't know when the surgery will be. She could be in the hospital for Halloween. So, that was where I had left things until last Friday.
During our weekly Meijer trip last Friday, I noticed that the Halloween costumes were out. There, sitting in the middle of the isle was the perfect costume for my daughter--a ladybug! We call ladybugs "doodlebugs" and we call her our doodlebug, so it seemed exactly right. We considered a different costume, only to discover it didn't come in her size. The ladybug did! Still, in the back of my mind, I wasn't sure I wanted to purchase a costume yet. My mind was full of what-ifs. Suddenly, a sense a calm came over me and I knew I had to buy it. Buying it was a leap of faith. Faith that she will get to celebrate Halloween regardless of whether she is in the hospital. Faith that she will be fine. Faith that life will go on post-surgery. It was and is more than a costume. It's a reminder of normal life. A reminder to treat Lil' Bit as though there is nothing wrong. A reminder to plan for the future. A timely reminder to be sure, as Lil' Bit's first birthday is swiftly approaching and I'll need to get cracking on planning in case the first two weeks of November are used up caring for her post-surgery.
What a wild first year it has been, and continues to be. There's no way to know what will happen in the next two months and no way to be fully prepared for everything even if I could know. All I can do is the same thing I've been doing the last 10 months--spend every day winging it, trying not to make the same mistakes more than twice, and remembering to enjoy the ride. Oh, and living vicariouly through Lil' Bit's wardrobe. ;). Come on Halloween!
9.09.2011
A Broken Heart
We encounter risk everyday. Every single choice we make or action we take involves risk. There's risk of injury, emotional pain, embarrassment, and failure, to name a few. Still, we get up each day and walk, eat, drive, work, and put ourselves out there. We take and accept these risks for ourselves often without conscious thought. Other risks we only take after careful thought. The risk inherent in medical care is one such risk. Generally, however, so long as you trust your healthcare provider, this level of risk is generally acceptable. So it was with some surprise that I found that the same is not true when it comes to my child.
Lil' Bit's cardiologist recommended that she have a heart catheterization to measure the pressures in her heart to determine if her VSD needed to be closed. He also indicated that during the test they could look to see whether she had any segment of left pulmonary artery that they could work with to try and attach a stent, get blood flow to the left lung, and see if it would grow. Now, if my doctor told me I needed a heart cath, I would, without reservation, recognize that it is a common procedure and that the risks were outweighed by the benefits and have the test done. Having to agree that doctors could perform the test on my daughter was not as simple. It had the same risks and benefits--indeed, perhaps greater benefits in her case given her situation--and yet the risks seemed too high. As a parent, there are times that any risk seems too high. Fortunately, I recognized the irrationality and emotional basis of this position and overcame my reluctance to have her get the procedure.
And so it was that earlier this week, we took Lil' Bit to the "big city" to have a heart cath done. It was scary, but we managed to get through it. She did great and came out of the test none the worse for wear. However, the results weren't what we had hoped. The pressures in her heart need to be taken care of, so they want to schedule her for open heart surgery sometime before Thanksgiving. In addition, there is nothing left of the left pulmonary artery to work with. Her right lung is doing all of the oxygenation at this point--in fact it is larger than normal, where the left one is smaller than normal. The left lung isn't doing anything, which means that sometime down the road she will likely have to have it removed. More surgery. My heart breaks each time I have to think about Lil' Bit having to go under the knife at such a young age. I know that she is unlikely to remember any of this, which also means that she likely has no stress or anxiety leading up to the procedures (unlike her parents). It doesn't make things any easier.
It reminds me of my own fragility and makes me wonder whether I can put myself out there and risk heartbreak with another child. My only consolation is that we elected to wait to go through another round of IVF until we learned what Lil' Bit's prognosis was. Don't get me wrong, she has a great prognosis. They feel confident in the surgery and, given her body's shown ability to adapt and compensate, see no long term issues related to her missing left pulmonary artery except the chance that she won't have as much "reserve" as those two-lunged folks. Even with the good prognosis, however, I am fairly certain that I would not be handling all of this information nearly as well if I were hyped up on fertility or pregnancy hormones.
Ultimately, this week boils down to two simple facts. The surgeon should be able to fix Lil' Bit's broken heart, but mine will break in the process. Such is the nature and sacrifice of parenthood, I suppose, but I was wholly unprepared for it all the same.
Lil' Bit's cardiologist recommended that she have a heart catheterization to measure the pressures in her heart to determine if her VSD needed to be closed. He also indicated that during the test they could look to see whether she had any segment of left pulmonary artery that they could work with to try and attach a stent, get blood flow to the left lung, and see if it would grow. Now, if my doctor told me I needed a heart cath, I would, without reservation, recognize that it is a common procedure and that the risks were outweighed by the benefits and have the test done. Having to agree that doctors could perform the test on my daughter was not as simple. It had the same risks and benefits--indeed, perhaps greater benefits in her case given her situation--and yet the risks seemed too high. As a parent, there are times that any risk seems too high. Fortunately, I recognized the irrationality and emotional basis of this position and overcame my reluctance to have her get the procedure.
And so it was that earlier this week, we took Lil' Bit to the "big city" to have a heart cath done. It was scary, but we managed to get through it. She did great and came out of the test none the worse for wear. However, the results weren't what we had hoped. The pressures in her heart need to be taken care of, so they want to schedule her for open heart surgery sometime before Thanksgiving. In addition, there is nothing left of the left pulmonary artery to work with. Her right lung is doing all of the oxygenation at this point--in fact it is larger than normal, where the left one is smaller than normal. The left lung isn't doing anything, which means that sometime down the road she will likely have to have it removed. More surgery. My heart breaks each time I have to think about Lil' Bit having to go under the knife at such a young age. I know that she is unlikely to remember any of this, which also means that she likely has no stress or anxiety leading up to the procedures (unlike her parents). It doesn't make things any easier.
It reminds me of my own fragility and makes me wonder whether I can put myself out there and risk heartbreak with another child. My only consolation is that we elected to wait to go through another round of IVF until we learned what Lil' Bit's prognosis was. Don't get me wrong, she has a great prognosis. They feel confident in the surgery and, given her body's shown ability to adapt and compensate, see no long term issues related to her missing left pulmonary artery except the chance that she won't have as much "reserve" as those two-lunged folks. Even with the good prognosis, however, I am fairly certain that I would not be handling all of this information nearly as well if I were hyped up on fertility or pregnancy hormones.
Ultimately, this week boils down to two simple facts. The surgeon should be able to fix Lil' Bit's broken heart, but mine will break in the process. Such is the nature and sacrifice of parenthood, I suppose, but I was wholly unprepared for it all the same.
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