It was relatively smooth sailing for a little more than a month. We brought Jonas home, eased our way into parenthood, relishing the sweet moments and groaning over the rough ones. Just like any other parents since the beginning of life.
I've often said, in hindsight, that I didn't really realize how poor Jonas's health was until after his second surgery. We didn't have anything to measure it against, and we were just trying to take it one day at a time. He seemed ok, or as ok as he could be.
He slept a lot, but I thought that was normal for a baby to do. I would really only worry if he slept for the better portion of a day and night, but even then I just let him rest. I think it's probably a good thing he is my first child, as I didn't know what was "normal".
One day in early October, we brought Jonas back to Miami Children's Hospital. It was just supposed to be a regular checkup, to assess his health and progress, and schedule a date for a catheterization.
After an EKG and an echocardiogram, it was determined that Jonas needed to be admitted for further testing, including an emergency catheterization.
The concern was that, due to the results of his preliminary tests, his heart was not functioning well enough to support the rest of his body functions.
That night, Kris and I slept next to Jonas's bed. At 6:00a.m., nurses came in to prep him for his procedure.
This time, we remembered to ask the nurse to board the hand he doesn't suck on
They took him away around 7:00, and we went downstairs to have breakfast and await the results of the procedure.
A couple of hours later, he was returned to his room. His breathing tube was removed, but he was having difficulties breathing on his own. He was greyish-blue, and several doctors and nurses crowded around him and quickly placed an oxygen mask on his face.
As for the catheterization, the results did not show anything abnormal. Doctors told us that his heart function was weak and decreased, but this was to be expected prior to his second surgery.
He stayed at MCH for another day or two, to recover from his procedure and to have his health monitored.
He seemed to be doing well enough to come home, and so once again we were discharged.
In the months that followed, I would get this sinking unsettling feeling just before I knew we were going to have to return to MCH again. There was one more time about a week or two later that we were readmitted for an overnight stay. Jonas was vomiting and his breathing was labored. All symptoms that we're supposed to take him to the hospital for immediately.
Every day that passed felt like we were biding time until the next surgery...