Frustrated Expectations and Tough Choices

So today we took Lil' Bit to the cardiologist for another echocardiogram.  Although her pressures were slightly elevated from earlier, it was generally the same--in December Dr. S got 42 and Dr. R got 48 and today Dr. S got 49.  Still better than the 60s she was at, but 20 is normal.  So, what does that mean?  I asked what purpose the meds served if the pressures weren't going down.  The answer was that they may be what's keeping her pressures at the level they are currently at.  So, instead of her having a heart cath this November and getting weaned off her meds, she's going to get a full-sedation echo this December and a heart cath next November when she's three.  That means we have to keep medicating her 6 times a day for at least the next 18 months.

The difficulty is that it's extremely hard to do anything when your child needs meds at 5, 6, 10, 2, 5 and 6, and it's extremely hard to find babysitters who you trust to medicate your child properly and timely.  It makes scheduling trips and just figuring out how to get in nap time and meal times really difficult.  Although we still plan to make our scheduled trips this year, it's going to take a lot more planning.

Don't get me wrong.  The fact that her pressures haven't increased is great news, and I'm lucky that there are meds that keep her healthy.  I just had thought the light at the end of the tunnel was this November and now it's been pushed out a year, with no guarantee that that's the end either.

And so, as I drove home today from the doctor's office, I asked myself several questions to which there are no easy answers.  We had attempted to schedule my pregnancy with Oliver so that I would be due after everything was done with Lil' Bit.  Now that the end won't come until almost 2014--if at all--are we willing to try having another child in the midst of all this craziness?  Can I take the risk of having another child knowing that, at least currently, I lack the capacity to cope if the next one also has medical issues?  How long do I have the patience and ability to wait while we try and figure out the answer to these questions?  The longer we wait, the older I get; the more we pay for embryo storage fees; the longer we make our child-raising years; and the longer we delay my hysterectomy.

I know that I don't have to (and shouldn't) make any decisions today.  But if I had to, I would say that I've hit my squeal point.  I think Lil' Bit will have to be enough.  I just don't have it in me right now to cope with pregnancy and Lil' Bit's meds and the lack of a guarantee on the health of any subsequent baby.  And that makes me even more sad.  Because I feel like I've lost everything all over again.  I am overwhelmed.  I am tired.  I feel like a complete failure.  I feel like I just can't catch a break and the world is dumping on me and I don't know why.  It sucks.  And all I can do, is just keep going.  Because really, at some point, I have to reach a tomorrow that is better.  I just hope it's sooner rather than later.

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.