Braeden
Imagine being told that your child may not live. I know that you will be receiving many letters from parents that have been affected by a Congenital Heart Defect. It is just a word, or diagnosis to those who have not endured the trials and tribulations of life with a heart child.
Our son Braeden was diagnosed 22 weeks into my pregnancy with Hypoplastic Left Heart Syndrome. His left ventricle was too small to pump blood throughout his body. We were understandably devistated all the more when it was reccomended that we terminate this pregnancy. The child that I had just felt kick inside me, was going to die. I had little hope.
We were eventually referred to the University of Michigan Congenital Heart Center, and I was given a glimmer of hope for our child. It was determined that he could have a series of three open heart surgeries. The first when he was only a few days old, the second aroung 4-6 months, and the last around 2 years old. We discussed transplant as well as compassionate care(Which means no surgical intervention)but felt that the three staged surgeries were our best chance for our child to survive.
In just one day, my pregnancy went from joyful, to somber. Should I set up the nursery? Should I have a baby shower? Would my child ever even come home?
Braeden was born on November 6, 2004. A beautiful little boy with a head full of dark hair, and eyes like his daddys. It was only a matter of five days before we were handing him over to a nurse for his first open heart surgery. I got to hold him for a short while, and watched them whisk him away...praying I would get the chance to hold him again.
The next time I was able to see my son he would be connected to countless machines, helping to save his life. We were lucky, his first surgery went very well and we were able to bring him home about 2 1/2 weeks later.
It was not easy at home as Braeden was on a rigorous schedule of medications and feedings(administered through a feeding tube)I don't remember getting much sleep those first few months...but I was so happy just to have my son home.
We were very careful about exposing him to anything, so we only took him out when he had an appointment. My weekly trips to Walmart became highlight in my life.(ahh the things we take for granted)
Braeden caught his first cold when he was 2 1/2 months old, and we came close to losing him. Can you imagine? The same cold that my older son easily weathered struck Braeden ferociously. By the time we arrived at The ER his oxygen levels were in the 30's.
After a 2 week stay at the hospital, he recoverd. Coming home this time was much different, as we now had a feeding pump, a sat monitor, and continuous oxygen. Soon it was time for his second open heart surgery.
The waiting is always the hardest for me, and as we once agian handed him over for surgery, I couldn't help but wonder...am I making the right decsion for my child?
The second surgery went okay, we had a few minor issues, but we were home within 2 weeks.
Finally we had a reprieve! A large gap of time at home to just enjoy some normalcy.
Braeden thrived at home. We had our issues with eating, and all of his milestones happened much later than they do for most kids, but he was home, and he was happy.
The third surgery loomed on the horizon like a horrible monster, and before we knew it, it was time to hand him over yet again. I had watched more friends lose their children to this surgery than any other, so ofcourse I was terrified. The initial surgery went well, but once Braeden was moved to the ICU it quickly became obvious that he was very sick. For 24 hours we thought we might very well lose him. His heart rate skyrocketed to around 220, and his blood pressure was dangerously low. Thank God he weathered yet another storm, and pulled through. Braeden is 4 1/2 now, doing quite well cardiac wise. He suffers from developmental delays which they cannot explain, but he still amazes us. He is an absolute joy in our lives, and has taught us to never take even one moment for granted.
Not a day goes by that I don't think about the fact that we are one of the "lucky" ones. Our child is here today, many we know are not. Something needs to be done to raise awareness for our children, something needs to be done to help find a cure.
Thank you,
Stephanie Husted
Carepages.com/babyhusted