Grant Paul (2006)
Grant was born on March 5, 2005. He weighed 8lbs. 10 oz making me wish we hadn't waited that extra week to induce! Everything seemed normal at that time. Later that day is when the nightmare began. One of the best days of our lives was now turning into also the worst.
I had questioned his coloring, and one of the nurses took him to run some tests. That's when they learned his saturations were too low and all the testing began. They told us he had to be transferred to a hospital with a NICU. Later that night he was diagnosed with Tetralogy of Fallot (TOF), and we were told he would be transferred once again, this time to a level 4 NICU the following morning.
On March 6 he was transferred to Cedars-Sinai Hospital in Los Angeles. He received his B-T shunt on March 8, three days old. A few days later the incision site became infected so he had to stay longer in the NICU than originally thought.
On March 16 we finally got to bring our baby home. He sees a cardiologist every 3-4 weeks. They anticipate the repair surgery in fall/winter of 2005.
Grant has definitely changed our lives in more ways than we could have expected. We try not to think about the next surgery, just taking it a step at a time.
February 2005 Update
After eight long months of waiting, it was finally time to schedule Grant's surgery for the repair. He was just learning how to crawl, but we noticed he was getting out of breath and then would start coughing so they wanted to get him in soon. So the date was set for November 15, 2005, a day that was both dreaded but also highly anticipated.
A week before the surgery Grant had a cardiac cath. Everything looked as expected, and everyone was confident the surgery would be a success. The only problem was trying to keep an eight-month old from crawling around once he woke up from the procedure!
Then came the surgery day. It was horrible to say good-bye to him. At least we were more prepared this time around than when he had the first surgery. We definitely had more confidence that everything was going to be fine, but still it was one of the most horrible moments.
When we were allowed in to see Grant after the surgery, we immediately noticed a difference in his coloring. He looked so pink - it was amazing. We had never really noticed anything wrong with his coloring before. It was just doctors had told us that he had a slight blue tinge to him. But now we could definitely see what the doctors had been telling us all these months.
He slept a lot that first day after the surgery. The next day we even got some smiles out of him! The third day they moved him to his own room, and we were constantly surprised how quickly he was coming back around. It was definitely hard to see him in pain, but it was so encouraging to see him getting back to normal so quickly.
When we got home, he would just look at his toys and not try to play with them, but every day he seemed to be doing better. After about one week after the surgery, he was back to crawling around! It was amazing! He was completely back to normal, and he was no longer coughing when he would crawl around.
It's so good to have this behind us. They say he might need a further surgery "in decades" for his pulmonary valve but that he's perfectly healthy now and not to worry about that.
We're now looking forward to celebrating his first birthday. We can't believe this journey started almost one year ago. It seems like all the bad stuff of this past year never happened, that it was just a nightmare. We forget all the fears and heartaches we've suffered every time we look at our beautiful, healthy little boy smiling back at us.