February 7th - 14th is CHD Awareness week
* Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.* Nearly 1 out of every 100 children born, are born with a CHD! Congenital heart defects are the #1 cause of birth defect related deaths, and the leading cause of all infant deaths in the United States.
* In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
* In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research. However, only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
I've been dwelling. Dwelling on the miracle that is Elaina. How blessed I am to have her here on this earth, when others have lost their valiant fights. I'm drawn to the blogs of families that have had to face the loss of their sweet Heart Hero's. My heart breaks for them, I cry for them. I pray for their peace and comfort.
I wonder about the future for Elaina. I have hope. Hope that she will be able to come home and make memories with me and Ben. Hope that the doctors will find answers or solutions for her heart that will extend her life. Hope that she will qualify for a heart transplant (this also comes with sorrow and anguish at the thought that another family would have to lose their child to save mine).
There is just so much uncertainty. I wish I could freeze this moment. Right now. She's stable. She's stronger than she's ever been. She has such an amazing sparkle in her eyes when she sees me..... I walked into her room today to find her "rocking" on all fours in her crib. She tilted her head to the side to look at me, then came the smile. The smile that told me more than any words could, that she loved me and was happy to see me. I lowered the crib rail and she launched herself sideways into my arms and gave me endless kisses. So sweet! So precious! We sat and snuggled. Talking to each other, playing pat-a-cake, singing songs ... until she melted into me and drifted to sleep. Nap time. I love being a part of that. There are days that I don't visit her until later in the day or the rare days that I miss (because I'm taking care of a sick Ben or have other appointments) and the nurses will tell me that she didn't nap, or stayed awake later than usual. She was waiting for her Mommy. It kind of breaks my heart that she waits for me. That she loves and anticipates our snuggle time as much as I do. {sigh}
RSV and Flu season will end soon, and then she will be home. HOME!
I am so blessed to be a Mother. I love my children with all my heart. They are my reason for being! They bring me joy and fulfillment. I guess I just needed to share this. To put it down, to remember how important they are to me. I learned a long time ago to take nothing for granted. Some of the things we value most can be taken from us in a heartbeat and our lives will be forever changed. I also think that our lives can be forever changed for the better if we embrace our challenges and trials and turn them into strengths. As I've pondered the happenings of the last 2 years with Elaina, I've decided that I wouldn't change anything. Don't get me wrong, it's been hard. Emotionally draining, harder even than when my 1st husband passed away unexpectedly. But I've grown from it. I've learned life lessons, and had my testimony of the Savior tested and strengthened more than I ever thought possible. My family is a gift from my Heavenly Father and I am so grateful for them. Thank you for all your love, support and most of all for your prayers. And thanks for checking in on us!
Hugs!
Hollie, Ben and Elaina
