Before the ultrasound when Owen was diagnosed with HLHS, we had never heard of a CHD. You always know that something could be wrong with your unborn baby, but how many people imagine that their baby could have a broken heart?? It's terrifying.
Nearly one in every 125 babies is born with a CHD. It is the #1 birth defect in America. This year alone, close to 40,000 babies will be born with a CHD.
Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined.
Though research is ongoing, at least 35 defects have now been identified.
4-8% born with CHD have Hypoplastic Left Heart Syndrome --> Owen's Defect
4-10% born with CHD have Atrioventricular Septal Defects
8-11% born with CHD have Coarctation of the Aorta
9-14% born with CHD have Tetralogy of Fallot
10-11% born with CHD have Transposition of the Great Arteries
14-16% born with CHD have Ventricular Septal Defects
Owen is our hero and a CHD survivor. His battle is not even close to over
. He will require a transplant in the near future (next year or sooner). He will forever be on medication to help prevent rejection of his new heart. He will most likely need multiple heart transplants in his lifetime. Please consider becoming an organ donor and spread awareness!!
What is a CHD???You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held him, I'd waited so long,
It's knowing that I need to help him grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do his nails look blue?
It's cringing inside at what he's been through.
It's dozens of call to his pediatrician
She knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching him sleeping his breathing is steady.
It's surgery day and I'll never be ready.
It's handing him over, I'm still not prepared,
It's knowing that his heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that he'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching him chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's a brave little boy who loves Thomas the train,
Or a special heart bear or a frog in the rain.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day.
I should probably stop with the monthly birthday updates, but I can't help myself. He changes so much every single month!
I have said it a couple of times this month, but I am still in a little bit of shock at how much energy he has. We are seeing a totally different side of Owen that we never knew existed. Before he turned two, there would be days of never getting out of bed, constant puking, and major irritability. Ever since I switched his diet to real food, I'm lucky if I can get him to sit still for a few minutes while I feed him. It's a total change and we are thrilled!!
With all his new energy, he has been making HUGE improvements in his gross motor skills. He started crawling a few weeks ago, but only takes about five crawls forward before he converts back to butt-scooting. Then, just a few days ago, he start pulling to a stand! He thinks he's pretty cool and loves to stand and sit, stand and sit. Just don't expect him to do it on queue or when the video camera is rolling. I have no idea why he stands in 2nd position either?
His speech has come a LONG way and he repeats just about anything he hears. The kids teach him some pretty interesting words... next time you see him, ask him to say "Do you want a piece of me?" Hilarious!
Overall, this little guy is growing up too fast. He is getting stronger and proving to the docs that his heart will hold out as long as he wants it too! He's gaining back his lost weight and his O2 sats have been lingering around 78 on 1/2 liter of oxygen. I am just in awe at his progress and we are so happy!!
