The Million Dollar Question

Part of human nature is to second-guess ourselves.  We spend a great deal of time wondering "what-if."  We look back with the knowledge of today on decisions made when we were less informed and berate ourselves for the choices we made or opportunitites missed.  I thought about this a lot this week while I was at the hospital with Jellybean.

This time last week, I was barrelling down the freeway, headed for Detroit to take Jellybean to the ER.  He had been lethargic all day and started to have difficulty breathing.  During the wee hours of the morning, they admitted him and, ultimately, determined he had bronchiolitis.  He was placed on oxygen while they assessed him.  His cough got worse, and he began vomiting worse than usual.  With the vomiting came dehydration, so they hooked him up to an IV to make sure he had enough fluid to keep his shunt working.  

Over the course of the next four days, Phil and I both caught a horrendous stomach virus.  FYI:  Juggling one healthy child is hard enough when you are sick--two, one of whom is in the hospital, presents more challenges.  Trying to pump and get milk to Jellybean when I was queasy, dehydrated, and not allowed to visit in case I was contagious--that was a whole new level of difficulty I didn't need to know about.  Fun times!  Ultimately, he got released once he was off oxygen and holding feeds down.  Of course, since his first feed home, he's been vomiting again.  We can't seem get enough food in him to keep up his calorie count, but at least we get enough in to keep him hydrated.  I have struggled this weekend with whether to take him back, but I worry he is more likely to catch something else at the hospital, so I am erring on the side of keeping him at home.

Of course, this week is Holy Week.  Having entered what is arguably the busiest week in the church calendar, finding time for all the doctor visits we already had scheduled, plus those we missed last week that need to be rescheduled, and new ones to check up on how he's doing, is not easy.  I totally understand how parents end up quitting work.  Taking care of special needs children is a full-time job.  And that's been frustrating for me.  I worked hard to become a lawyer, and I would like to use the degree I'm still paying for.  But more than that, I LOVE my job and my coworkers.  Even if, financially, I could give it up, I don't want to.  And so I struggle to do it all.  My house isn't as clean as I would like.  We eat way too much junk food, which is catching up to me (but that's a story for another time).  My life is one big ball of chaos.

So, as I sat in the hospital, holding a restless infant who was hooked up to dozens of wires in one hand, I surfed the internet with the other.  I don't remember where I saw it, or who wrote it, but I read a blog post written by a parent who was asked by a friend if having children was worth it.  It reminded me of back when we were first discussing whether we wanted children--long before we knew about the infertility, the CHDs, or anything else.  Back when we weren't sure if we even wanted run-of-the-mill "regular" kids.  I closed my eyes and asked myself the million-dollar question:  If I could do it all again, knowing what I know now, would I?

The joy of watching my children grow; watching them learn; feeling that first hug; hearing that first "I love you, mommy."  Experiencing all of those beautiful moments, knowing the joy and strength they give me, my heart says "of course I would."  But, at the same time, if I am being honest, I can tell you that, if I had been told at the outset that I would have two children who needed open-heart surgery, I would have opted for a child-free life.  I would not have known that I had it in me to survive this stuff.  I would never have believed it of myself.  But, making the decision with the knowledge I have now would require me to balance those disparate things--the joy and amazement with the extreme difficulties--and I have no idea, even with hindsight, how I would have weighed those experiences against each other and what decision I would have reached.

What I do know is that I love my children with all my heart, and I will be the best mother I can to them, for however long I get to have them.  And, I am grateful that we don't get to know everything before making big decisions because I might have decided not to have kids, and I would have missed out on some amazing moments.  What I learned from the million-dollar question was not whether children were the right decision.  I learned that a life worth living is a life with risk.  Without risk, there is no challenge to overcome, and, without challenge, there is no growth.  I don't like it.  As a risk-averse person, I will probably always struggle with it.  It doesn't make it any less true.  I will try to remember it, the next time I "wish I had known..."

My Miracle

I talk about my miracle children all the time.  They are miracles because we were able to conceive them with IVF, because they both survived in utero even with crazy heart conditions, and because they are both thriving and don't look like heart patients.   Every minute of every day is a miracle with them.  But, when I call Jellybean my miracle child, I am referring not just to those things, but to an amazing moment of grace--when I asked for a very specific miracle and got it.

Last November, when we were at CHM waiting for Jellybean's surgery to start, we were talking with our support people--Phil's mother and one of our very dear friends.  As we typed blog posts and Facebook updates, we talked about the frustrating OB I had had who kept insisting there was nothing wrong with Jellybean's heart and kept inferring that once he was born, we would see there was nothing wrong.  Obviously, that was not the case.  We also talked about the well-meaning people who had said similar things, not from the perspective of medicine, but that God might give us a miracle and heal Jellybean's heart.  And as we sat at the table waiting--I will never forget--I said to them:  My miracle would be if there is enough of his own tissue to reach between the left and right branch pulmonary arteries without having to use anything artifical or homograft.  If I could have a miracle, that would be it.

Fast-forward to our meeting with the surgeon hours later, once the procedure was over.  He said that when he went in to detach the LBPA from the truncus, he discovered that there was an extra pouch of tissue on the side of the truncus and that he was able to take a long flap of that to make a "tounge" that reached all the way across to the RBPA, which he then covered with Patrick's own pericardial tissue (the sack around the heart).  The benefit of this was twofold.  First, because it was all his own tissue, there was no chance of rejection.  Second, because it wasn't artificial, but live, growing tissue, there was a good chance that it would grow with him and, thus, wouldn't need to be perpetually replaced the way the artifical parts that will be used for his complete repair (whether truncus or HLHS) will need to be replaced.

There it was.  My miracle.  Not exactly as I had imagined--I was picturing a really long LBPA that would reach across--but it was still what I had asked for.  I was amazed.  Blown away.  For a brief moment, I had the thought, "Maybe my prayer was too small.  Should I have asked for more?"  "No," I answered myself.  Sometimes we get miracles because we what we ask for is the right size.  After all, there is no way the medical community, or the world at large, is ready for healing of that magnitude.  It would result in forever making Jellybean the subject of research.  No, what I asked for and received was a small way for Jellybean's life, and mine to some extent, to be easier.  A mini-miracle, if you will.

From the moment the doctor told us about the wonderful surprise he encountered that allowed him to do the PA fix without any artifical material, I knew Jellybean was being watched over and protected.  I sometimes imagine God sitting at a bench, like a judge, looking down on us, saying, "Asked and answered, counselor."  It makes me smile.  Phil and I have spoken about the fact that maybe all of the people who passed away just before and just after Jellybean's birth and surgery went when they did to help him from the other side.  I can believe that; that my grandmothers helped make my miracle happen; that Phil's mentor helped smooth Jellybean's recovery and is helping with his growth and development.  I can feel the truth of it deep down.  Loss and joy intertwined, creating my miracle.  Thanks be to God.