A Long Road, But Worth Every Minute of It...... From a Mother's Perspective

My mom told me I should write a book, but this is probably as close as I will get.  I've had some quiet time today to think about some things.  During Jace's journey, we have had the pleasure of meeting two other families with boys who have the same heart condition as Jace who are close to the same age.  Brad and Catherine, Cain's parents, are from Nashville and Alan and Anne, Brandon's parents, are from Frankfort.  Cain has recently had his Fontan surgery and Brandon is around 15 months old and will have his Fontan sometime in the near future. We are able to keep in touch through phone calls, texts, facebook, and blogs.  Even though we may not see them often, it doesn't take long to form friendships and special bonds with other "heart parents."  So today I have been thinking a lot about our boys' heart journeys.

While visiting with us lastnight, Catherine mentioned that she saw a doctor in the hallway who had  encouraged "compassionate care" with them as an option for Cain.  When you find out your child has a heart condition such as our boys have, you do have options.  One of those options is compassionate care.  That basically means that when your child is born you seek no medical treatment for them.  You simply leave the hospital, take your child home with you, comfort him as best as you can, and wait for him to die.  While this option is unthinkable to me, I realize there are parents who make this difficult decision rather than have their child suffer through the long road to recovery. 

Another option you have, the one we all chose, is a series of three operations.  The first is the Norwood which is performed usually a few days after birth.  The second is the Glenn which is around 6 months.  The third and final surgery is the Fontan which is done around 2 to 3 years of age.  Each surgery is done based on when the child is ready.  Some happen sooner if complications arise and others may happen later if the child is not ready.  This series of surgeries basically restructures the heart to work like it is a complete heart, rather than only half of one.  It is a long road to get to this point with many possible risks and complications.  Choosing this option does not always guarantee that your child will be okay.  There are many children who never make it to the completion of all three surgeries.  I've not done a lot of research on survival statistics.  It didn't take me long to know that Jace's life was in God's hands and that was all that mattered, not some doctor telling me what his chances were.  It's a good thing too because the first doctor Jamie talked to when he arrived at the hospital didn't give Jace much hope of living.  If she could only see him now!

This afternoon I came across a comment that Alan had made after our surgery day post:

We have been thinking about you guys all day. I'm glad to hear it is going well. We were eating dinner when I looked up and saw Anne crying reading your update on her phone and well then I had to read it and I be danged if I didn't have happy tears too. Best of wishes and prayers to all of you, it is a long road.


Alan and Anne

After reading this comment, I began to think about his last statement....it is a long road.  It has been a long road for us looking back.  It has taken us 28 months to get where we are today.  Not every one of those days have been easy either.  As well as Jace has done, he has still had his ups and downs.  He had a stroke during his first surgery and seizures a few days after.  He has the g-tube which has been a struggle at times to get his feeds where he can tolerate them.  He had a blood clot after the first surgery that required a port with a needle be stuck into his leg and left so shots could be given twice a day without sticking him each time.  After the 2nd surgery he developed an infection that resulted in a 3 week hospital stay and sent home on IV antibiotics.  So his road has not always been the smoothest, but God has always been right there with us at every stage of his journey. 

As far as our road goes, Jamie, Taylor, and I, along with our parents, have had to make many sacrifices.  Being on house arrest for him, as we refer to it, means not being able to go and do everything we might like to.  As heart parents, there have been times that are almost unbearable.  No parent should ever have to kiss their child good-bye before surgery and walk away knowing that might be the last time you see your child like that.  Or have to sit in a waiting room while your child is in surgery waiting for the phone to ring to hear your child is okay and then wait to hear from the surgeon that everything went well.  Without God and a strong family support, I don't know how you would make it through without literally going crazy.  Despite the worry, there has been a sweet peace that has let me know that God is in control of Jace's outcome.  As his sister, Taylor has not always been able to have friends over at times because we couldn't take the chance of Jace getting sick.  Our parents have sacrificed their time to keep him at our house since he has not been allowed to be in daycare.  They have been with us during every hospital stay to support us and help with Taylor.  We couldn't have done it without them. Jamie and I have been blessed with jobs that have allowed us to be with Jace during each hospital stay and also great health insurance to cover the medical care cost which is getting close to the million dollar mark if not there already. 

No matter what the sacrifices or costs have been during this long road to recovery, it has been worth every minute of it!!  When thinking about the compassionate care option today, I began to think about all the good things we would have missed out on had we chosen that option such as:
*Jace's bright eyes and smile we see each day
*his giggles when Taylor does something funny
*the way he says daddy, mommy, sissy, pa, nanny, poppy, gran all in one breath and the funny way he says Shelby and Scooby Doo
*the snuggling time during feeds and at night when he gets so close to Jamie or I that we can't turn over
*all the cute little tricks that he does daily to entertain us like his mean look, dancing with his head, showing us how pa snores, the difference in how much he loves pa and nanny that of course pa taught him, and my two favorites, where my sugar is (he points to his bottom) and when you ask him what mommy does he moves his hand like he's talking (his daddy taught him that one).
The list could go on and on with all the sweet things he does and even the little mischievous things he does that we can't help but love too. 

As long and difficult as this road has been at times, I wouldn't change a thing. It has been worth every minute of it to be where we are today.  I can't help but to think about lyrics from a Garth Brooks song....I could have missed the pain, but I'd of had to miss the dance.

With so many bumps in the road behind us, I look forward to the road ahead of us along Jace's journey.