Thankfully, through a lot of prayers we have many peaceful, joyful moments with sweet Ruby Jane. It’s still hard. Not knowing the outcome of something can be terrifying.
Dillon and I were told while still in the hospital that Ruby has Tetralogy of Fallot. A loud heart murmur and rapid heartbeat caused the pediatrician to order an echocardiogram which was sent to a cardiologist at Primary Children’s Hospital, who wanted to see her very soon. We met with the cardiologist when she was one week old, on my husband’s birthday. The cardiologist drew a picture of Ruby’s heart and labeled six things that are wrong with her heart. We talked about the first surgery, hopefully between 4-6 months, depending on how she is doing with her oxygen levels. We talked about weekly weight checks and saturation tests. We talked about physical limitations in her lifetime (thankfully not many–just avoid contact sports). We talked about how many surgeries she would need in her lifetime (the average is three). We talked about blood work and starting beta blocker medicine next month, along with more echocardiograms and such. It was a long 2 hours at the hospital.
A lot of people we’ve talked to have said, “Oh, so and so was born with that, but they outgrew it,” or other simple solutions. This is not the case with Tetralogy of Fallot. If not operated on and fixed, there is only a 5% chance of those with Tetralogy of Fallot making it to their 40’s. Only 4 in 10,000 kids are born with this congenital heart defect in the US per year. So as much as I wish it was something that she would outgrow or that would fix itself, it’s not.
BUT, we are hopeful. The success/survival rate of those who have a full repair on their heart is 95%. So the odds are wonderful. She is home and doing great. She is what they call a pink tet, meaning her heart is able to get the oxygen her body needs throughout it. She is gaining weight. And we are loving and cherishing every minute with her.
I have had many moments of just plain losing it and bawling my eyes out. Hearing stories that didn’t work out just crush my soul. But my sweet hubby said something that thankfully has stuck with me because it was perfect. Friday, June 7, is when we found out, and that night I was alone in the hospital with her for about an hour. It was dark in the hospital room and I was just holding Ruby tightly, crying like I’ve never cried before. Dillon got back to the hospital and sat on the bed to help me, taking Ruby and rocking her, gently reassuring me that things were how they were supposed to be. I will never forget that night. I will never forget Dillon’s perfect words of comfort for this very emotional post-pregnancy momma. One of the things he said was, “Christie, this is how God sent her to us. This is how He wanted her to come to us.” And that brings me an enormous amount of peace.
And so, to the father of my children I wish a Happy Father’s Day. Because of Dillon, I get to have my sweet children. I am so thankful for my kids. I am so thankful to my Father in Heaven for blessing us with four beautiful children. And we will take them however they come! Ruby is still perfect to us.
I thank you all for the sweet comments here from Ruby’s birth post, and also for the words of comfort and support on instagram or facebook, since I already shared the news there. Blogging will probably not be normal around here for a long time. I have a couple posts scheduled from before I had Ruby, but mostly I’m just going to try to regain some normalcy after having a baby. You all know how that can be.
Now I have a 12 day old little Ruby Jane to go snuggle. :)