Congenital Heart Defect Awareness Week

Did you know this week was congenital heart defect awareness week?

I never in a million years would have thought that I would be an encyclopedia on how babies can die in utero let alone well versed in congenital heart defects. Mind you, Ruby had the heart defects that “if a kid has one, these are the ones you want”. I don’t know why people say that. Ugh. Doesn’t make one feel any better when they pass their 2 month daughter off to a surgery team who will stop her heart; but I understand that yes, it could have been a whole lot worse. I get that. I have experienced the “worse.” There is no pain like the death of your child.

After the loss of Everett, and over a year of secondary infertility, we secretly thought that God owed us a perfect pregnancy and birthing experience with our third child and maybe even a baby that was a good sleeper and a good eater…

ha.

We didn’t necessarily get those things, but we wouldn’t trade any of it for our Ruby, born July 25, 2011 with congenital heart defects. Ruby had joined the statistics, she was the 1 out of 100. We struggled with the feedings and sleeping, we were in and out of the hospital but most importantly her heart was successfully repaired on October 6, 2011.

1 in 100, that statistic is SO INCREDIBLE. I think awareness is out there in the world, but only to those of us and our friends and families who have experienced CHD. I think there needs to be more education and help for newly diagnosed children and families with all the feeding issues that occur. We were kind of just sent home with our newborn and expected to just look for a few symptoms.

fussy while eating.
sleepy…

ya know, the things that MOST newborns encounter. We felt so helpless and like we were doing something wrong, when in fact, her heart defects were the true reasons we were having such a hard time with feedings. Looking back, it is always easier to see what the problem is, but in the moment, it is terrifying. I’m so glad those days are behind us.

Ruby is holding her Beads of Courage, an amazing nationwide organization that supplies hospitals with beads for children who undergo multiple treatments/surgeries or things that involve courage. Ruby got A LOT of beads and each one represents something that was done to her. She has beads for things like: IV starts. She has 7 of those beads. EKGs and X-rays: 13 beads. Visits from PT or OT: 15 beads. Her heart bead for cardiac surgery and the list goes on and on.

When I see her beads, I wish with all my heart that my brother would have had the beads of courage. Of all people, he deserved them. 8 years of cancer…would have probably given him 20 necklaces. I have NO IDEA why MD Anderson in Texas or Mayo Clinic in Rochester, MIN would not have started him on this program. Makes me sad to think he missed out on it.

Conceived by our second attempt at an IUI, Ruby is our miracle baby on many levels. Thank you Jesus for giving us this gift in Ruby.

A couple of bloggers have decided to join up with other moms for a Pinterest Awareness Challenge for CHD Awareness. Check out some of the amazing stories. Ours will go up soon..

To read the history of Ruby’s heart defects start here



 

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