We took both of the kiddos in to see the cardiologist and to have echocardiograms last week.
First, Bailee. After talking with a genetics counselor, Dr. P, and between ourselves, we decided to take a look at Bailee's heart. She obviously doesn't have any major heart defects, but with the family history of 'left-sided' defects there is a chance she could have a valve defect. We were specifically looking at her aortic valve to be sure it has three working flaps. As I've mentioned before, Luke has a bi-cuspid aortic valve, which means it has two flaps instead of three.
Bai was pretty nervous about the whole thing. It's been several years since she's been to one of Maddox's appointments, and she didn't feel comfortable. We talked a lot about what an echo is, how they do one, and even what we were looking for. The ech tech was awesome with her. He alleviated her fears, he talked to her about what to expect, and he read her cues well.
It was quite different to see her heart. I've seen Maddox's so many times. It was fascinating to see four seperate, distinct chambers with blood flowing in the right direction. Blue and red blood seperated and circulating. The heart is miraculous! When he was checking out her aortic valve I could see the three flaps, and that they were working. To my untrained eye, everything looked perfect.
When we met with Dr. P. she confirmed that Bailee's heart is working just as it should be. That should be her first and last echo. I could see that she was relieved as well. As much as I was trying to prepare her and not worry her, I'm sure she was nervous. She was happy to be able to take a new blanket home and to be done with that adventure.
Now onto Maddox. I swear this kid has the strangest reactions to the hospital and doctors in general. I believe it must be one of his innate gifts. An ability to cope with situations and remember the good parts. He has been looking forward to echo day for the last six months. When he heard that Bai got to have an echo too, he couldn't wait to tell her. He thought that was the best news ever.
Like the sweet little brother he always is, he wanted to share this with her. He told her that you get to bring your own movie to watch, and helped her pick one out. He chattered all the way to Primary Children's about how great this day was.
Luke, bless his soul, was able to take the day off to go to these appointments with us. It was a blessing in so many ways. Especially because the did the echos at the same time. He was able to go with Maddox so I could sit with Bailee.
When we all came back together in the examine room, Maddox declared that 'this was the best family day ever!' He really couldn't have been happier. Back to his coping skills, I really think his mind blocks out the 'owies' and the anxiety that most kids associate with the doctor and the hospital. He remembers watching movies, unlimited slushies and sprite, and ordering whatever he wanted to eat. He got to see Spider-man every day, have puppies visit his room, and play with all kinds of cool things in the playroom. It was like the best vacation ever.
As far as his heart goes, things couldn't look better. His function is normal for a post-Fontan heart. It's working beautifully. In fact, it's working so well she decided its time to come off one of his medications. We will be weaning it over the next month. It's so crazy because he's been on this one since he was a month old. It's a med that helps the heart squeeze. I can't believe he doesn't need it any more. She did increase the other med he's on. He started it a year and a half ago in hopes it would decrease the pressure in his heart. Dr. P felt that he should stay on it awhile longer and the dose was increased to match his weight gain.
She was so pleased with how he's growing, how he looks, and how he sounds. It's truly mind blowing to look back over the last four years and see how far Maddox (and the rest of us) have come. This was an appointment I didn't dare hope for, the one at the end of the plan.
So that's where we are. We are at the end of the plan. There's nothing specific to expect. There are no more planned surgeries. There is life and a million possibilities. This miracle boy can do anything he sets his mind to. He can be anything, go anywhere, play whatever he wants. (Please, please, please pray he gets over his obsession with playing football. He might be able to handle that, but I don't think his momma can.) He doesn't go back until next September. 8 months! And them we'll go to a yearly appointment. I truly believed that would never, ever happen.
I feel so blessed to have been a part of this miracle, and to have witnessed and experienced a life I never knew existed. At the same time I feel anxious about the lack of a plan and expectations. As a mother, I've had that plan to guide me over the last four years. It feels so strange to be stepping away from that part of our life.
Many have asked, 'what's next?' I have often replied 'Transplant, when he needs it.' It's felt inevitable for the past four years. My new answer is going to be, 'Life. A wonderful, full, happy life that we'll take a day at a time.' My little guy is going to grow up. He's going to school. He's learning and thriving. My hope is there will be a dozen new things to try to help his heart last a really, really, really long time. Until the Savior comes again and heals this perfect heart. And if the time comes that Maddox needs an angel heart, we'll make a new plan. Until then, we'll see what adventures he finds himself on. I have a feeling it'll be a lot.
I said we don't go back until September. I left out the little part about baby #3. In January we will have a fetal echo and check out this little ones heart. After birth, I'll request another echo. As much as I've learned to love this heart journey, I don't want another surprise. I don't feel line anything is wrong, and I'm not stressing about it, but I want to know. It's so funny to me to be more interested in that ultrasound than the one where you find out the baby's gender. Maybe because I already know the answer to that? Defintely because now I know gender isn't really what we're looking for. 11 weeks and counting!
