Losing Control

Having a child who has to undergo multiple open heart surgeries obviously is a scary and hard thing to go through.  I guess in a weird way having my first born be the one with the "special circumstances" is a good thing (if you can even say that any part of her heart condition is actually "good").  She's my base line, she's the control sample.  Before the birth of my healthy son, I literally didn't know any different than what I experienced with my daughter.  As insane as it was, it was my "normal."

"Normal" meant the following: stressful pregnancy, scheduled induction, baby born, baby taken away, baby stabilized in NICU, baby transferred to Children's Hospital Cardiac Intensive Care Unit, wheeled over to CICU to meet baby for first time, baby undergoes heart surgery at four days old, baby comes out of surgery on life support, baby lives in ICU on life support for one week, I live at home postpartum without my baby, baby comes off life support, baby recovers enough to be transferred to recovery floor, I live with baby at hospital for four weeks under heavy monitoring, I learn how to take care of cardiac baby from nurses, baby finally comes home after five weeks.  Before my healthy son, that was all I knew.

And just like most parents learn with their first child -- healthy or not -- you are not in control of anything.  I think anyone who has had a child will tell you it's a humbling experience to learn that while you are the one 100% responsible, 100% accountable, and 100% in charge of this little human -- you tend to feel like you are the exact opposite.  The baby won't stop crying.  The baby doesn't like it when I change it's diaper.  The baby won't latch.  The baby won't take a bottle.  The baby won't sleep.  The baby sleeps too much....and on and on and on.  In those first weeks and sometimes months you sincerely feel like you have absolutely no qualifications for this job and it's just a matter of time before social services comes knocking on your door saying "Now, come on Mrs. Mollygog.  How long did you think you could get away with this?  You clearly have no idea what you're doing.  Now hand me the baby and we'll find a more experienced/capable person to raise this human."  Honestly, on some exceptionally bad days, I was hoping that exchange with social service would actually happen, I felt so damn bad for the baby.

Well, add an extremely rare congenital heart defect to your first time of ever having had baby and you learn even faster that You.  Are.  Not.  In.  Control.  

Once we made it home, we were given a binder where we had to record every ounce of liquid that made it in and out of our baby 24 hours a day, 7 days a week.  We had special powders and formulas we had to add to my breast milk (which made me feel like I was back in Mr. Clark's 7th grade science class doing the "sludge test." And anyone who knows me knows I was terrible at both math and science.  Uh-oh baby -- try to hang in there!)  Oh, and we had to feed the high caloric sludge to her every three hours around the clock for 7+ months.  

We were sent home with a scale and an oxymeter and asked to record weights/readings twice a day.  We had visiting nurses.  We had weekly phone calls with our team at Children's and we had many, many, follow-up appointments with all kinds of specialists (audiology, neurology, GI...).  Don't get me wrong we needed all these specialists/nurses in our lives directing our every move.  And being forced to track all of this information for what felt like every minute of everyday actually tricked us into thinking at times that we were in control of the uncontrollable.  But it was also hard to be under such scrutiny.  What if we made a mistake?  What if the numbers start going down?  What if she rejects the formula and doesn't grow enough in time for her next surgery?  Somehow, we've miraculously made it this far with all the help in the world at Children's but what if we fuck it up now that we're home?  Will the doctors say THEY did all they could but in the end it was actually US that screwed it all up?  It was a wee bit stressful.  

Any parent of a newborn is terrified they are doing something wrong.  Why won't she burp?  Why does her poop look like that?  Is it ok that she's been in the swing that long?  I haven't changed a wet diaper in a while....oh god, is she dehydrated?  The second guessing just doesn't stop.  Thankfully, in our situation (so I guess you can categorize this under "Good Things About Having a Baby with a Heart Condition") I either had the binder to refer to my last mistake (I mean accomplishment), or I had about eight different nurses/specialists I could call day or night to ask these kinds of questions to and who would reassure me that either everything was ok or everything was not ok and to bring her back into the hospital.  

There has never been a single moment since she was conceived where we've felt in control of our daughter's future.  If anything we felt as out of control as any parent-to-be feels about the future of their unborn baby.  Will we be good parents?  Will we be able to keep her safe from drugs, alcohol, car accidents?  Will we be able to afford to pay for her to go to college?  Will she chose a good partner to be with?  But once we got her diagnosis when I was five months pregnant we had those worries and then some other ones.  Will she live?  What if she makes it through the first surgery but not the second?  What if she makes it through the first two but not the third?  What will her quality of life be like?  Will she need special machines to live?  Will she be able to do regular things?  Will she be able to have children of her own someday if she wants to?  If she does survive all three surgeries, how long can she be expected to live?  If, god forbid, we ever were to lose her, would our marriage be able to survive something like that?  

My point is, there have been many lessons in becoming a heart mom. The biggest lesson of them all might just have to be that no matter how hard I try, no matter how much I think I can --  I simply cannot control this situation.  Yah, that might just be the biggest lesson so far.  

So far, we've made it through two open heart surgeries, a couple of caths, and we survived ECMO unscathed (which is most definitely not always the case).   I haven't been back to work since Feb 23, 2010.  Oh, and I had another baby (which between me and you was a surprise -- will save THAT for another post).  But we've never felt in control of any of it.  

And even in spite of what at times has felt like losing control of literally everything, we still have our little girl, our little boy, our marriage, and even a tiny bit of our sanity.

It's a miracle, folks.  A downright miracle.