Words seem so inadequate to express the last four years with you in our lives. You caused excitement from the very beginning. Our first baby in over four years, your constant flip-flopping from breech, to transverse to head down and back. Your cord prolapse when I was alone in the bathroom at home. A call to 911 and your emergency c-section.
They said you were “perfect”.
At three months you developed stridor and quit gaining weight. You had the doctors stumped. X-rays, CF sweat test, feeding evaluations, adenoids removed, bronchoscopy. You were hospitalized for RSV and pneumonia. We were told you were “much sicker than most RSV babies”. Then another call to 911. This time you choked on a piece of food. The incident went on for ten minutes or more, until you passed out.
Enough was enough. Your dad and I agreed to call the doctor every day until he agreed to refer to a cardiologist or order an MRI. It only took four days and four calls.
You were diagnosed with a double aortic arch and your heart was “repaired”. Only you didn’t get better. More tests were done and your g-tube was placed. We spent the summer recovering, researching and asking more questions.
In October we took you to Texas Children’s Hospital. Your heart was repaired again. We were told you would probably be tube-free within six months. A year and a half later you are still dependent on it. I love and hate that tube at the same time.
Your life has been a serious of questions, struggles and tests. Your dad and I have worried endlessly. Would we lose you? Would you come through this with your spirit intact? So much pain, so much fear for such a little boy.
But that is not who you are. Your are not a series of medical conditions. You are a precious little boy, a treasured son. At four you are gaining confidence. Your struggles aren’t over, but you are hitting your stride. You love LEGO and Mr. Potato Head and books and swimming and exploring. Your spirit is intact, if a bit battle weary.
Words and photos are not enough to describe who you are.
Apollo XIV, you are loved.