Just lounging around. Not doing much of anything. But as time winds down and I go back to work soon it is time for the check ups, dentist appts, molar removal, etc etc.
Jillian had her well check last with her wonderful pediatrician. Love him! He hasn't seen her in two years, since her last well check, well because.....she's been.....HEALTHY. As much as we love him there has been no need to see him.
So...she's tall. Growing well. No complaints. Still dealing with leg pain, but that is more of a cardiac issue.
At the end of the appointment he gushed. Yes, he gushed. He told me when he saw that Jillian was on his calendar the other day he was so excited and couldn't wait to see her. He talked about where she was, where she's been and it just makes him so happy to see how well she is doing. He ended with she is a story that makes a doctor happy. Love that guy.
On Tuesday we took her back to UCSF. Nothing surgical. No interventions.
She went to have a follow up evaluation by a neurologist and a developmental psychologist. She has been a part of a cardiac MRI study since she was diagnosed with severe congenital heart disease as an infant.
You can read about the study here:
Basically they are researching the link between more severe heart defects with brain injury. What they have found is that through MRIs these babies brains look more like premature babies and that the thought is they risk more problems with brain development thus the "brain injury". The thought was there was risk of brain injury during surgery but they're finding that with the more serious heart defects the brain injury may already be there.
We agreed to be in this study after the doctor who runs the study came by after Jillian was admitted to UCSF. It's funny - at the time I was rather angry - and I called the nurses and staff associated with the study vultures. They were looking for certain defects so not every child was asked to be a part of the study. It seemed I only saw these "study" people when - what I referred to as fresh meat - had been admitted. At first I told Russ I wanted them to stay away...like I said, I was angry. But then I figured as long as it didn't hurt her and cause her any more suffering or pain and might help babies like her in the future, why not.
So she had the MRIs before and after her surgeries. Then she was asked to come back when I think she was almost two for a battery of developmental tests. Over the years we have had some questionarries.
Then about two weeks ago UCSF called and wondered if we might bring her in to do those developmental/psychological and neuro tests. Why not?
I explained to her beforehand where we were going and why. I told her that she was helping the doctors to learn more about children like her and how to better help them. She thought that was cool. But then she had more questions about what exactly they were going to ask her. I tried to explain as best I could. So she stressed a little because she wanted to make sure they knew she was smart. She even said she hoped they asked her why the stars are on the flag because she would so nail that question.
But she was a rockstar as usual. Did just fine. They don't tell us anything but I know that developmentally she is doing great.
We visited the 7th floor which is where the cardiac ICU is and saw a few nurses who are always happy to see her.
But as we waited for her during her testing I had some mixed emotions. Going to San Francisco is not a pleasure trip anymore. It's not something we will wake up and go "hey, lets go visit San Fran". Bad memories. And definately pulling into the UCSF parking garage, walking through the doors, waiting for the elevator, walking through the halls....brings so many emotions back to the surface. We waited in the waiting room on the 6th floor, which is mostly the children's oncology floor and where the playroom is. I walked down the hall to use the restroom and had a smile on my face because of something Russ said as I left the waiting room. I was passing the playroom and looked in and saw a little girl sitting at a table coloring. She was hooked up to an IV and was obviously sick. I stopped automatically at the window and just stared at her. The smile left my face. I felt guilty that I had been walking happily by with a smile. I looked over and saw the weary, tired, overwhelmed parents bravely smiling at their kids.
Being in that hospital brings such a mix of emotions. The familiarity. It almost feels like a homecoming when we go. The fear. The smells. The blank faces. The beeps of the machines. The overwhelming despair and sadness that I felt there. But also the hope and happiness of having Jillian to bring home. The tears, the laughter, the depression, the solitude.
It's all there, waiting for me every time we return.
And what a relief it is when we leave, after a short 3 hours, our Jilly intact...smiling, laughing and absolutely sure that she nailed those questions that lady asked.