Tuesday, January 3, 2012

My Sweet Little Broken Heart - Why This Heart?

D Day, Dec 28th, 2011.  Quite reluctantly, I prepared to take my sweet little Baylee to Primary Children's Medical Center that morning for a Cardiac MRI to determine the strength of her heart muscle and whether or not the deterioration from her L Transposition and valve leakage was severe enough to warrant open heart valve replacement surgery in the near future.

 I've realized I'm intentionally reluctant when it comes to her heart.  Every year since her birth I've scheduled an annual trip to the cardiologist for a heart check up.  And, every year I push off scheduling for a few months past the 12 month mark.  It's kind of like the dentist.  You know you have to go but no one likes to.  I know she needs to go, but if I can just forget for a few days that she isn't quite perfect inside, it seems like a small reprieve from what may come.  It doesn't really work - I just worry a few days longer - ugh, you'd think I'd learn.  You see, I'm a genetic worrier.  (There really is a genetic component to anxiety and worry I've been told.  At least I choose to openly blame it on my mother, also a genetic worrier.)  On a side note - why don't men worry?  I don't get it!  They seem to brush off the minor to major worry moments in life and simply see happiness and promise.  If only....

Unfortunately, I've passed the worry gene down to my daughter and thus this hospital trip was doomed before it began.  Baylee and I went over what would happen during the procedure, but no one told us about the necessary IV for contrast material.  It was a flurry of "I'm leaving this hospital right now!" and, "I'm not doing this!" tearful shriekings with wisps of hair flying out of head bands for about 30 minutes.  I kept repeating that we had to do this and there was no option - but I could not quiet her fear. I asked her to trust me, but she'd said that I have adult skin and she has kid skin and so it doesn't feel the same for her.  How can she trust that when I say it doesn't hurt too badly that it won't hurt her too badly?  In a strange way that kind of makes sense.  About 15 minutes into the tirade my sweet Baylee finally screamed in desperation what I knew she would someday ask me, "Why do I have to have this heart!?!"  In an instant my heart stopped and I could no longer keep up the facade of normalcy for her.  As tears rolled down my cheeks she saw the worry on my face for the 1st time in her sweet life.  I'd hidden it for years behind closed doors and muffled pillows, but now she knew.  I hugged her as tightly as possible and then cradled her face gently in my hands.  We spoke briefly about life, God and our existence here on this Earth.  I told her I loved her and that it would be ok, though I'm really not sure it will be - I'm a worrier, remember. 

By now the entire wing of the hospital had most definitely heard the commotion and a slew of nurses filed in to try and diffuse the situation.  They demonstrated how small the needle was on a doll Baylee would get to take home, offered a video demonstrating techniques (seriously - why would they even offer this one!) and I even suggested a tranquilizer to calm her down!  It was then that our small miracle occurred, one that I'm writing in my gratitude journal for sure, a nurse offered Baylee a J Tip to numb her hand before the IV would be inserted.  A J Tip Miracle!  Baylee agreed to let them hold her hand and without needles a syringe of supernatural liquid was released which instantly numbed the site and allowed them to insert the IV without Baylee even knowing the needle was already in.  (I took this photo as a reminder for her ablation surgery that the IV DID NOT hurt! I'm saving the photo on my phone just in case!) 

A little mild anxiety and a full length Rio DVD goggle watching later, the test was over and we were on our way home!  With a new Webkinz Yorkie, IV doll and fingernail polish of choice, all compliments of the hospital, Baylee happily inquired if she would get presents every time she went.  Guess all it takes is a few freebies and she's on board - just like her mom!

We got the results in record time the next day.  Baylee's heart strength is in the normal, though "low" normal, range.  I am thrilled by this!  However, her valve leakage is moderate as detected on the earlier ultrasound.  We're off for a few more tests like a Holter Monitor (24 hour heart monitor) and a treadmill stress test and tomorrow I'll be confirming the Cardiac Ablation surgery which should be in the next two weeks.

Sometimes I can forget she's a little broken, I hope I can forget again soon...


  1. I'm with you on the worrying part. My husband has type 1 diabetes and the worry we go through right before his appointments is unmatched with anything else. Add to that the worry if one of our kids might ever get it, and worry is our middle name. I'm glad to hear that everything went well. You both are amazing!

  2. I wish I had known about that stuff! Whenever I get shots/iv's, I have seizures; that's how afraid of them I am. The numbing stuff could have been useful!

  3. Thank you for the update.. I read your last post about this and it touched me so much I don't recall if I commented or not. But the thoughts and prayers are there for you for strength, her for courage, and the medical teams for guidance. I have worked for the pediatric department for almost 8 years, just quitting recently to be a stay at home mommy to my 3. Its wonderful to be able to read and follow from your point of view, what you guys are going thru, and the how wonderfully you are doing in supporting your daughter thru this journey. God bless!

  4. This sweet little girl is in my prayers now. I know some of those feelings, with my oldest having a kidney issue. God bless.

  5. Amy, Being a mom is so tough... especially when our kids suffer. You will both be stronger from the experience and I know you already know that. Know that you have my love and support! Lisa

  6. Thanks for your support everyone and good luck to you Traci & Syanchar!


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