Over a month has now gone by since my last entry, and it is almost unbelievable. I just crept in to the kids' bedroom to find Ada soundly sleeping. Peaceful. Normal. I don't know how many times in her life I have crept in to see how she was doing as she slept... checking to see that she was still breathing, still alive. Yikes. Seems a little morbid? Yet I have talked to many other parents about this habit, and it seems to be a pretty normal thing- though my assumption is that someday, some year I will be able to sleep through the night again?! To lie down and sleep in peace... what a dream come true!
Ada's Fontan procedure has become a part of her history, praise the Lord. The looming event is now past, and it really seems now like a crazy dream. Tomorrow it will have been five weeks ago. Aaaand it feels like a lifetime ago. A huuuuge part of that is the fact that our house is now half packed and we are 2 weeks from becoming Minnesota residents. Yikes again.
The short story is that Ada's second and final open heart surgery went as planned on June 22, with little to no major complications resulting. She had a stay at Children's Hospital of 12 days, which was well within the realm of normal. Twenty-four hours after surgery was completed, the nurses had Ada up and WALKING. As the days went on, she was able to take less pain meds and showed more of her personality (it was a celebration to hear her feisty self return!) The last few days we were simply waiting on her chest tubes to slow their draining of fluid so that they could be pulled. Since being discharged, Ada has gradually weaned off oxygen as well, and is only given a diuretic once a day.
She can run.
See, this is the thing. Ada is four, and our eldest child. So we have compared her activity level with other kids, but also have not known what is just her personality, and how she has been affected by her heart anatomy. Before the surgery, Ada would run - maybe a half a block? - and whine and ask to be carried. Or she would start to walk - saunter, really - but would get winded fairly easily or quickly. Now she can run and run and run! (We may have spent more than we should have on a pair of toddler shoes that will only fit her for a few months, because CELEBRATION, that's why.) And she can dance and dance. She has not had a shift in her behavior or attitude or personality, which I was wondering about... wondering how she had been affected by perhaps feeling somewhat crummy all the time... but we are so thankful anyways to have our spitfire of a daughter back home. Her spunk was so evident in her hospitalization, and I have to think that the strength of her character has served her well these past years. I paraphrase Napoleon (?) when I say, "Let her sleep... for when she wakes, she will move mountains." Watch out, world.
This parenting thing is not for the faint of heart. I remember how scared and overwhelmed I felt when we walked out of the hospital for the first time with Ada, feeling as if we were certainly breaking some law, and that I was going to majorly mess something up for her. The first year of her life was a struggle first to get her to grow, and then post-surgery to keep her healthy. And the next cold and flu season was the same story. And this winter and spring was laughable (I wasn't laughing though, let's be clear) with how much of the time we had sickness in our home. Seems as if a certain young family member liked to touch every germy thing and put everything in his mouth. And then another young family member could not not kiss her brother. Figures. Oh, the work of it - the work of caring for my children. And the work and worry and avoidance and effort involved in protecting Ada and keeping her healthy for the surgery that would change the trajectory of her life.
And there I was, a few days after surgery, sitting in Urgent Care, receiving the news that I had a 103.7 degree temp (that is Fahrenheit... for those of you looking for a Celsius conversion, I am pretty sure I was at about 9,000 degrees.) Strep, perhaps. The doctor forbade me from going back to Children's to be with my daughter until I had been temperature free and on antibiotics for over 24 hours. Suddenly, I was the danger. I wept as I drove home, knowing that as much as I wanted to be with Ada and felt that she needed me in the days of recovery, I also knew that I could put her at great risk if I ignored the warnings and showed up at her bedside. Two days later, though, I was back. Nick was a rock star, staying at Ada's bedside throughout, night and day. It was exhausting, for sure. We were relieved to finally be released as it meant that we wouldn't be interrupted in the middle of the night for checking vitals, etc.
We had been able to meet with the surgeon prior to surgery, and he talked us through our consent forms we needed to sign. We watched as he filled in the blank for our other options... none. "You don't have to do this surgery, but if you do not, Ada's oxygen levels will continue to drop." He was honest about possible risks and complications. It was very solemn, yet we knew that this Terrible that was looming in front of us was necessary and couldn't be side-stepped. Our Ada-girl would have more energy for life. Four and a half or five hours later, a team of excellent surgeons, doctors, nurses, and assistants had finished an amazing, miraculous surgery that is unbelievable and that has already helped my daughter to RUN. Perhaps later I will write more of the particulars of the surgery and of Ada's heart anatomy for those who are interested. But for now, I sit amazed that we are on the other side of this thing. Hugely stressful, scary. But so amazing. We are so thankful for all the prayers and support and love from so many of you!
