We were listening to the radio on our way back to Children's Mercy this afternoon. And, it hit us like a hammer hitting a nail how hard it is for William to be just a little boy. We heard the following song on the radio:
If any of you listen to KLOVE, you have heard the story of Matt Hammitt of Sanctus Real and his little boy with a congenital heart defect. They found out that Bowen was going to be born with a "broken" heart while in utero. Here's a link to their website: http://bowensheart.com/
The song was written for Baby Bowen. Well, you can hear how it goes. And, then you can see us living this life right now with our Prince William. The condition Bowen and William have are not the same but the thoughts of us as parents are much the same.
We did not know about William's defect before he was born or anything about how it all would play out. But, we are learning more each day. His condition is RARE....TAPVR. There are only a "handful" repaired every year at Children's Mercy. And, the cardiac surgeon has never had to repeat a repair UNTIL William. We are currently in Children's Mercy after a recent failed cardiac cath. His work of breathing is increased and need for oxygen is present--never there since before surgery. We are not so patiently waiting to meet with Dr. O'Brien (his surgeon) to determine when William's next open heart surgery is to repair his narrowed confluence between the pulmonary veins and left atrium. Such a hard wait to see your baby back in a hospital bed, seeing your other kiddos back at their grandparents' houses rather than your own house, and spending yet another Saturday night in the hospital.
Some recent pics!!!
One of our days at home....all 3 kiddos in OUR bed!!
Happy 4th of July!! (This shirt was worn by Mackenzie on her first 4th and a matching one was worn by Carson (who was almost 1 at the time) at his first 4th!!!
"Are you serious, daddy? I am here again, and I have an IV in my head again!!!"
Total peace this afternoon in mommy's arms!!
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