And on the 204th Day...

...God provided a new heart for our little girl! The day began like most of the previous 203. I got up and went to work feeling tired, worn out, wishing it would end...I even came across a cool word that I hadn't used in a long time while reading an article: ennui. I even posted it as "the word of the day" on my Facebook status update. I went about my day and didn't give it anymore thought.

I left work a little early because I had to run by the church to take care of some stuff. Then I went home, changed clothes, and stuck my dinner in the nuker, thinking about what I needed to get done that night. Suddenly the phone rang. The caller ID said it was Cristi. At 6:30, I thought it early for her to be calling, but occasionally she calls me at odd times, so I didn't think about it too much. After all, why should I expect anything? It's been Groundhog Day for 204 days! But, after exchanging marital pleasantries, I hear, "So, are you up for a road trip?" "Come on, are you kidding me?", I respond. "I couldn't kid about that. You'd kill me!" "Yeah, but it's been so long! Do you really want me to come right now?" "Yes." "OK. I can leave in an hour."

I arrived at the hospital about 9:45. Lauren was just finishing up labs and x-rays, but still didn't know what was happening. We knew that if we told her, she'd never go to sleep, and she'd need her rest with the trauma to follow. Cristi did read her the transplant "storybook" from Child Life, though. Lauren liked reading that book. They read it several times that night.

It was great getting to hug Lauren before the big event. After putting her to bed, Cristi and I went and hung out with some dear friends from New Jersey that came over to keep us company. It was nice to be able to think about other things for a while, but strangely, neither of us had the uncontrollable wave of emotion we expected. We also talked to Lauren's doctor, who was away for the week at transplant camp. He told us the heart was not good -- it was perfect! Awesome! Then it was worth the wait! At midnight, we sent our friends on their way. We knew it was going to be a long night, because, at that point, the Philadelphia team still hadn't arrived at the origin to pick up the heart. The adrenaline was wearing off, too. I was getting tired. Cristi and I went back to Lauren's room to get a nap. At this rate, it would be morning before Lauren was out of surgery.

At 1:30, we woke up to find anesthesia in the room. I guess that heart travelled quicker than we thought. Cristi quickly woke Lauren up, who took one look at the anesthesia team and said, "My new strong heart?" Cristi told her, yes, it was time, and as Lauren's nervousness came on her, the anesthesia team sedated her. We walked her all the way to the OR. Her eyes were open, but no one was home. I suppose that was good. Well, here began the journey into the unknown...

We went back to Lauren's room to get some sleep. After just a few minutes (about 2:15), a nurse came in, introduced herself, and told us she'd give us hourly updates, but to expect the surgery could go 4-6 hours, possibly up to 10. At 3:30, she came back and said that they were ready to put the new heart in. At 4:30, she told us they were just finishing up -- after only 2 hours! That could only mean good news! At about 5:00, the surgeon came in and said that everything went extremely well and he was going to go extubate her (take her off the ventilator). We were shocked! That usually takes at least 24 hours! We found out later that that surgeon tends to be very conservative, which makes the extubation that much more remarkable!

At 5:30, we were finally able to see Lauren. She kinda woke up -- enough to mutter a little bit, but stayed pretty much out of it that whole day. The doctors said that they couldn't be happier! We couldn't have been either! So much culminated in that one moment: Joy over a successful surgery and transplant, the realization that the end of this portion of the journey is finally in sight, and the realization that it had only been a few short hours since a family had seen through the grief of losing their child to give ours the gift of life.

We continue to think about the donor family and to be thankful for their generosity. We received a package yesterday that allows us to send an anonymous thank-you note to the family. We can't wait to relay our thanks, tell them about our wonderful little girl, and how many people have been touched by her story.

Lauren continues to do well, and we've passed a major hurdle...but this story is far from over. As Lauren's cardiologist explained to us, we've essentially traded one disease (heart disease) for another (transplant disease). Obviously, one is a better option for life than the other, but she will be on a large drug cocktail for the rest of her life. Her immune system will be suppressed, which means it will be much easier to get sick. And, transplanted hearts don't last forever. We don't know how long it will last. What we do know is that hearts transplanted 15-20 years ago are failing now. Doctors have learned an enormous amount over that 15-20 years, but it's still fairly safe to say that she may have to go through this again. Wow! Hard to think about...

Lauren still has all of her other issues, too -- or at least we don't know how they've been impacted. We're not sure if her pulmonary hypertension has resolved with the new heart. Her cardiologist told us beforehand he believed it would resolve. We should have a good idea about that before Lauren comes back home. She still has poor muscle quality (i.e., not all her muscles are formed correctly). We can hope the new heart will at least give her more stamina that she can pair with her physical and occupational therapies to get stronger. There's also an on-going study that may give us some insight as to potentially helpful treatments. Finally, she's still completely tube-fed. We had a few weeks of working on eating prior to transplant. Unfortunately, Lauren didn't cooperate with the two swallow studies and they terminated the feed-a-Lauren program. Who can blame her? Who likes barium, or having a camera shoved up your nose and down into your throat? We're hoping to start working on that again before discharge. There are so many unknowns...so much to think about...so I won't right now.

Instead, I will rejoice in the answered prayer of a hugely successful surgery and our family being reunited. We don't have an exact date yet, but we have a target timeframe. Lauren will remain in the ICU for 1-2 weeks, then she'll transfer back to the regular cardiac ward for another 1-2 weeks. During that time, they'll be constantly monitoring her progress. After discharge, she'll have to remain in the local area for another couple of months due to the high number of appointments. She'll have doctor appointments twice a week and several heart caths during that time. But that will taper off, and our family will once again be whole again -- probably around Halloween. That's about 10 months of being apart. In that time, our family has changed a lot. Lauren talks all the time now. She's like a little person with her own personality. Addison has turned into a full-fledged Tween while Cristi's been gone. Brennan's grown up, too. We've moved and Cristi doesn't know where anything is in the new house. There will be challenges reintegrating, but I'll take it. We have a date!