For Gracie

We've been praying for Baby Gracie every night for almost 7 months now. It's almost as if she has become a part of our family. She is going through another set of complications, and preparing for her second surgery right now. We don't know if her Mom will ever see our blog or not, but if she does we wanted her to see Jackson, hear his story, and know what is possible for sweet Gracie.



This first picture is one taken by a nurse before Jackson went up to Primary Children's. It's the only thing I had of him while I was still in the hospital, unable to see him. I remember how proud I was of him and how cute he was, even with all the tubes and wires. Jax was blue when he was born. The doctor thought it was because he was 4 1/2 weeks early and his lungs weren't developed enough. Soon enough we discovered that was not the case. The doctors at Utah Valley couldn't tell us what was wrong. Only that it was his heart and they had already called Life Flight. He ended up going to Primary Children's in an ambulance b/c all the helicopters were grounded due to weather.

Jax was quickly diagnosed with Transposition of the Great Arteries and went in for his heart cath. That went well and we were told surgery would come at five days old. They would've like to have done it sooner, but b/c he was small they wanted to give him a couple of days to grow and rest.

After surgery. Five days old. This is in the PICU. We weren't able to hold him, and could barely touch him b/c it seemed to irritate him. He looks a lot bigger in these pictures than he was in real life. He was only about 5 1/2 pounds, but was very swollen from the surgery.

They slowly weaned him off the meds that kept him asleep. It was so sad when he opened his eyes. He looked so scared. At that point I didn't know what the future held for him. I hoped he would recover and be perfectly healthy, but I was too scared to really let myself even think about it. He is about a week old here.

After he graduated to his private room on the third floor I had hopes he would come home quickly. He ended up staying there for another 2 weeks (which is not nearly as long as sweet Gracie had to stay the first time), which seemed like an eternity to me. This is him doing the car seat oxygen test. It is the best picture I could find to show his scar. This is probably a day or two before he went home, so about 3 weeks old.

In the end, Jax stayed for just over 3 weeks at the hospital. It took him about 6 months after coming home from the hospital to become a "normal" baby and stop looking so scared and upset all the time. I didn't care. I would have taken him any way I could get him.

This of course is him now. His scar is almost invisible to those who don't know it's there. I didn't believe it would ever look this good, but it does. He does have a big knot on his sternum where his ribs fused back together. They say it happens in about 10% of open heart surgery cases. It's pretty prominent b/c he is such a skinny guy. I wish I could have known then what I know now... It doesn't matter. Not one bit. I couldn't care less. Actually I kinda like it. It's his cool battle scar, and a reminder of what a special kid he is.

Slowly, over the last 5 years, I've thought less and less about his heart. At first I would go a day without thinking about it, then a week, then longer. Now I don't really think about it, except to schedule his yearly echo cardiograms and check-ups at PCMC. I know we have been extremely blessed that Jax has not had any major complications. He does have leaky heart valves and his aorta and pulmonary vein are slightly narrow. These are pretty standard and will probably never cause him a problem. If they do, it will likely be fixed by another cath. But, I choose not to think about that today. I'll think about it tomorrow.

For now, please pray for Gracie. We pray that she will have the best outcome possible for her and her family, and that one day, they will look back and think that they haven't thought about her surgery for days, or weeks, or years :)

Please take a minute and check out Gracie's blog. She could use your prayers right now :)