A little over two years ago I was thrust into the heart world, something I never expected. Filled with uncertainty and fear, I hadn't yet made it to that point of understanding what this would mean for me and my family. I didn't truly comprehend the facts that were coming my way. 1 in 100. 50% chance of transplant by the age of 5. I would outlive my child. There were so many words and emotions to sort through.
The facts and statistics remain. So does the fear, uncertainty, and anxiety. But in the two short years that I have been living this heart life I have found that there is so much more to it. It's so hard to find the right words to express what CHD means to me. I both hate and love it. I hate that it rips so many away from us far to soon. I hate that my 20 month old knows what a double lumen is. I hate that I know the best drugs to sedate her with. I hate that my life is filled with battles on all fronts. Battles against cold and flu season. Battles for insurance. Battles for the best possible care for my Livie. Battles against my own inner demons. I hate that most haunting of warnings, one of the first things ever said to us after the official diagnosis, "You will outlive your child."
While I hate CHD with a passion I have never before known, I have to love it too. There was never any other way that I would meet the amazing women who are now some of my best and dearest friends. There was never any other way that I would learn how strong I could be. There was no other way for my small family to grow as close as we are now. I know that there was never any other way I was going to get Olivia. My beautiful sweet girl. She has fought more battles in her twenty months than I have my whole life. She fights to live and to live big.
The past two days Olivia and I have been sick, suffering from that stomach bug that's been making it's way around. Olivia cried for me when she through up in the middle of the night. When I opened the door to her room she smiled and said "Uh-oh." Being sick was just an inconvenience for her. Just an "Uh-oh." We sent daddy and Ella to Grandma's so they wouldn't pick up this nasty thing that Livie and I are sharing and spent some beautiful one on one time together. While mommy laid miserably on the couch Olivia played in between feeding mommy crackers and making sure I was ok. This amazing girl is so much stronger than me. She never let's sickness drag her down. She never lets anything drag her down.
I've spent a lot of my sick-time thinking about CHD. I've been thinking about the past two years and what it all means. I want so badly to share what's inside of me because of this sweet girl and her beautiful half heart. Finding the words to express what this all has meant to me is near impossible. How do you explain how it feels to see a scar on your child's chest every day and know what she went through to receive that badge of honor? I have seen real miracles. How do you explain how that feels?
The CHD facts are this:
Congenital Heart Defects are the #1 defect throughout the world.
Approximately 1 in 100 babies is born with a heart defect.
Heart defects are the #1 cause of birth defect related deaths.
CHD is the leading cause of all infant deaths in the United States.
There are approximately 35 different types of CHD.
The HLHS facts are:
About 1% of all CHD's are HLHS.
A hypoplastic left ventricle means that the left ventricle, the portion that pumps blood throughout the body, is underdeveloped or not functioning. In Olivia's case, it is underdeveloped.
Treatment of HLHS is a series of three surgeries. At birth, the Norwood. At 3-6 months, the Glenn. At 3-5 years, the Fontan. While these surgeries save lives, they in no way fix the heart.
25 years ago infants with HLHS didn't survive and so long-term effects of the surgeries are unknown.
Facts from our life:
Because of CHD Olivia had horrible reflux.
Olivia's reflux was bad enough that it caused her to fail 6 swallow studies.
Olivia spent 9 months of her life feeding through a tube that went from her nose to her small intestine.
As well as a feeding tube, Olivia was on oxygen full-time for about 6 months. After that she was able to switch to night-time oxygen for another three months.
In Olivia's 20 months she has had two open-heart surgeries, two heart caths where collaterals were coiled and her LPA was stented, multiple echos, ekg's, xrays, 7 swallow studies, feeding therapy, decreased heart function, and hopefully recovery from decreased heart function by the time she's 2.
In Olivia's 20 months she has learned how to roll from front to back, crawl, walk, talk, laugh, tease, tickle, scream, bat her lashes, and everything else a normal kid would do.
Valentines has a very different meaning for our family since Olivia has come into our lives. It's not about romance and chocolate and flowers. It's about strength and survival and celebrating the miracle of 20 months with a beautiful brown eyed toddler.
The CHD facts are this:
Congenital Heart Defects are the #1 defect throughout the world.
Approximately 1 in 100 babies is born with a heart defect.
Heart defects are the #1 cause of birth defect related deaths.
CHD is the leading cause of all infant deaths in the United States.
There are approximately 35 different types of CHD.
The HLHS facts are:
About 1% of all CHD's are HLHS.
A hypoplastic left ventricle means that the left ventricle, the portion that pumps blood throughout the body, is underdeveloped or not functioning. In Olivia's case, it is underdeveloped.
Treatment of HLHS is a series of three surgeries. At birth, the Norwood. At 3-6 months, the Glenn. At 3-5 years, the Fontan. While these surgeries save lives, they in no way fix the heart.
25 years ago infants with HLHS didn't survive and so long-term effects of the surgeries are unknown.
Facts from our life:
Because of CHD Olivia had horrible reflux.
Olivia's reflux was bad enough that it caused her to fail 6 swallow studies.
Olivia spent 9 months of her life feeding through a tube that went from her nose to her small intestine.
As well as a feeding tube, Olivia was on oxygen full-time for about 6 months. After that she was able to switch to night-time oxygen for another three months.
In Olivia's 20 months she has had two open-heart surgeries, two heart caths where collaterals were coiled and her LPA was stented, multiple echos, ekg's, xrays, 7 swallow studies, feeding therapy, decreased heart function, and hopefully recovery from decreased heart function by the time she's 2.
In Olivia's 20 months she has learned how to roll from front to back, crawl, walk, talk, laugh, tease, tickle, scream, bat her lashes, and everything else a normal kid would do.
Valentines has a very different meaning for our family since Olivia has come into our lives. It's not about romance and chocolate and flowers. It's about strength and survival and celebrating the miracle of 20 months with a beautiful brown eyed toddler.
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