Brent's Journey - Part 4

Brent's Journey - Part 3

Brent's Journey - Part 2

Brent's Journey - Part 1

9 Months And Counting...

First Haircut

We have not updated the blog in quite a while.  Primarily it is because we mostly update Brent's Facebook page now.  (www.facebook.com/brentsspecialheart)  We find most of our friends and family use Facebook, and it is easier for us to keep everyone updated with quick posts on his page.  Still, I realize not everyone uses Facebook, and I wanted to provide a quick update for those of you who may stumble across this page.  When we first learned of Brent's congenital heart defect, we found a few blogs that were very helpful in educating us about what we might expect in the coming months.  I'm hoping this blog will serve the same purpose for other families experiencing the same journey.

Brent turns 9 months old tomorrow!  June 2nd of 2014 was when we first learned of his diagnosis,
and it is a day I will never forget.  We had the fortune of learning of his diagnosis in advance of his birth, so it gave us about 3 months to research and plan for what we were up against.  There were many times in the 3 months before his birth that I wondered if we would make it to the 1 month, 3 month, 6 months, 1 year mark, etc.  Brent overall is doing very well for all he has been through these past 9 months.

After the Glenn

Brent had his first open heart surgery in September just 12 days after being born.  He was in the hospital for 25 days following the first surgery.  He had a heart catheterization surgery in early January of 2015 in preparation for his Glenn open heart surgery, which he had at the end of January.  During his Glenn surgery, his diaphragm was paralyzed, which delayed his recovery.  He was in the hospital for 2 weeks, and there was a possibility that he would have to come home on oxygen.  Thankfully he recovered enough where he was able to come home without it.  He has regained partial function of his diaphragm in the months since his surgery, and we are optimistic he will eventually regain full function, though it is not guaranteed.  Brent also had pacemaker wires implanted during his Glenn surgery since he will likely need a pacemaker in the foreseeable future, but thankfully he does not need one yet.

Brent does weekly physical therapy as he is a bit behind in his physical development due to his surgeries and all the time in the hospital.  At 6 months old, he wasn't even able to roll over on his belly and he HATED tummy time.  At 9 months old, he is now rolling around and tolerating tummy time very well.  He still does not attempt to crawl and he is not sitting up on his own yet, but he is getting stronger each day and we can see him making positive strides in building his core strength.  Milestones look different for heart babies, and we are careful not to compare his journey to that of his older 3 siblings.  Brent will learn to crawl and walk in his own time, and we are quiet content with his progress.

Brent and Bryce

We are seeing the cardiologist every 3 months now, which is a big change from the weekly and bi-weekly appointments we had prior to his Glenn.  He is caught up on his vaccinations and starting to build up his immune system with the occasional cold.  We have an upcoming appointment to check for fluid build up on his brain.  He had a minor brain lesion at birth which they were hoping would resolve on its own.  He has a sedated MRI in the next few weeks, and we will learn whether or not he will have to have surgery on his brain.  We are optimistic that he will not need the surgery, but we have also learned that anything can happen on this journey.

Although the past 9 months has had some long and scary days, it has also been filled with a lot of love and joy as well.  On most days, taking care of Brent isn't much different than what we experienced with our other kids.  He laughs, he coos, he plays, he smiles at his mommy and daddy, he loves his siblings, he cries when he is tired or hungry, and he gives us lots and lots of diapers to change!  His condition has just given the perspective to enjoy these moments a bit more than we might have done otherwise, and for that we are very thankful.