Thoughts Today

I have been pretty emotional today. Another family in the hospital has been on my mind and heart a lot today. This little baby girl's name is Katelyn and she has HLHS, too. I am not sure how old she is, but I believe she just had her Norwood recently. We don't come across too many little ones with HLHS, so we like to meet them when we can, so we can lean on one another. Katelyn is in CICU and Brooks has spoken to her mother and grandmother a few times. They are understandably very emotional and it just breaks my heart. I want to ask you all to pray for little Katelyn and her family.

Things are going well with Emma Kate today. She is on continuous feeds with half pedialyte/half portagen. We will see how she tolerates it. So far, 9 1/2 hours and no throwing up! She has a cold and is kind of stuffy and has a lot of mucus. But I feel like she is doing better. I am just so thankful that her heart is doing great! We just got an update from Dr. Kanter, chief of surgery (Dr. Kirshbom is out this week). We will be here a few more days to get EKs feedings under control. So we keep waiting and praying, and we are making some progress.

One thing that I have been thinking about a lot today is that I still can't believe we are part of this whole "heart" community. It just amazes me how little I knew about kids born with heart defects before I had my own child with one. Our lives have been changed so much by the birth and life of Emma Kate, and I am so grateful that the technology is available today to keep her alive. Thirty years ago, she most certainly wouldn't have survived a short time after being born. HLHS is such a serious, rare defect and if you don't know someone who has it, you probably have never heard of it. February 14th is CHD (Congenital Heart Defect) Awareness Day. I have some stickers I got from tchin.org that I want to give out to others who want them. Obviously, CHD's cannot be prevented, but research for CHDs can be funded if there is more awareness. Here are some interesting facts:

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  Congenital Heart Defects are the #1 birth defect. (Source: March of Dimes)
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  Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. (Source: Children’s Heart Foundation)
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  The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. (Source: Children’s Heart Foundation)
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  Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. (Source: Children’s Heart Foundation)

If you want stickers or information brochures about CHDs, you can go to http://www.tchin.org/. I don't know if they still have them to mail to you, if not, and you still want some, I got several from them I can mail to you. :)


Today I have had a good amount of down time while Emma Kate has been sleeping so deeply. I've been "stalking" other HLHSers blogs. I came across really precious poem written by an HLHS baby's mom. Probably written around Christmas time.



Twas the night that you joined us...all eyes were on earth.
Awaiting with joy for a most special birth.
The angel's stood ready...for each need and care,
But all of them knew... that the Lord would be there,
And I labored on... and daddy was scared,
We waited...and wondered... and hoped we'd prepared.
We knew you were special...but so very sick,
Yet hope had grown in me... with every kick.
And soon it was time...into this world you came,
I heard a soft cry... then I called out your name....
And God held your hands...while the angels stood by,
Since I could not hold you...they hushed your soft cries.
One small angel looked to the father and smiled,
"Can you truly teach hope... through such a small child"?
"An infant so helpless...a baby so new...
"Oh please tell me Lord...is this what you will do"?
God looked from the angel...to the baby's sweet face,
"Through her my young charge... they will learn about grace".
"I penned this child's journey...quite a long time ago,
"And through her great courage...such true love will grow".
"Every hair on her head has been numbered you see.."
"It's my hope that through her... they will learn to see me.
"Oh my little one with a special heart... Great love will see you through.."
"See look that is your family.. They've been waiting for you.."
"I send you to their waiting arms...for a time we'll be apart.."
"But I'll always be with you...for I live within your heart."
And so we held you in our arms...And thanked our Lord above..
In you...we see the miracle, of His undying love.
So when it's Christmas morning, And I watch my children play,
I'll need no great reminders, For I see my gifts each day.

-Stephanie Husted (Mommy to Braeden, HLHS)

After reading that I have cried many tears, but I also have a lot of joy in my heart.