Saturday 12 Jul 2014

Information and opinions presented here do not always represent the views of the American Heart Association.

Blake’s Story – A Break

Published: 1:00 am CDT, February 11, 2013

The next two years was relatively uneventful for Blake’s heart.  We had the opportunity to live like a normal family with fun and adventures.  Looking back, I feel like we tried to cram everything awesome into every minute (and if I’m being honest with myself I still do that).  We wanted Blake’s (and our daughter, Mason’s) life to be joyful, fun, and to enjoy all the blessings that have been bestowed upon us.

Blake had to live his little life, whatever it was going to be.

We tried not to push him or be overly aggressive when assessing developmental milestones (not knowing when or if he was ever going to reach them due to the damage to his brain), but we were always thrilled when he did.  We had to treat Blake as an individual – he was a boy, a preemie, and had a special heart; he deserved to be on his own timeline.

We worried ourselves sick about every cold, but over time we learned some perspective; even though Blake has a special heart, he is also a kid that is going to get sick and hurt, and we can only protect him so much.

It was important for us to be proactive medically (getting RSV prevention shots, ensuring all vaccinations are current, and securing flu shots earlier than most), but it was also important that we didn’t walk on eggshells.

During this time we discovered that Blake needed glasses.  He is extremely farsighted, and we discovered it because one of his eyes turned inwards significantly.  Doctors told us this farsightedness could be attributed to lack of oxygen to the brain either from low blood oxygen saturations or time on the heart lung bypass machine.  Either way, we were grateful we discovered this while he was young so he didn’t spend years living in blurriness.

At 10 months old we put him in preschool (he had a nanny up to this point) because we wanted to be sure he was socialized with other kids.  Although it was a terribly gut-wrenching decision, Blake wanted to be where his sister was, and there was no reason we shouldn’t put him there.  We found loving caretakers and a school we trusted, and we made the plunge.

In December 2010, during visits to our cardiologist, we started seeing the flow in Blake’s aortic arch change.  This was one of the indications that we needed to plan for his third (and last planned) open-heart surgery.  Luckily, he was still feeling and acting great, so we had six months to wait and plan for the surgery.

We knew this time would be different; he was a boy, full of life and personality and sending him into surgery and the subsequent recovery was going to be different.  Although each of the surgeries were difficult because we loved him deeply and beyond measure, now he was engrained in every aspect of our life, and we knew to let go of that little hand was going to so much harder.

  • Natalie More

    Your family continues to inspire us. We are parents to a VERY active 20 month old little guy with Aortic Stenosis and bi-cuspid valve. We have found that there are no GHD support groups in our area so being able to identify with other families on line is such a great way to support each other and not feel so isolated. We are sending prayers and big hugs to your family!

  • Brooke McMillan

    Sending love and strength to your sweet family.