The day that G was born was a long one for me. I was impatient to meet him face to face, and he was determined to delay our introduction as long as possible. When he finally arrived, he surprised everyone with his size. 9 lbs - not colossal, but not what anyone was expecting. I was immediately impressed with how perfect he was. Ever since, he has amazed me everyday with his persistence, curiosity, intelligence, and strength.
During our hospital stay, the pediatrician noticed a heart murmur, the loud whooshing sound of turbulent blood in the heart, but said not to worry right away. Many babies are born with murmurs that go away on their own within a few weeks. I was one of those babies, so I was not overly concerned. When the GP could still hear it five weeks later, the process was set in motion to have G checked by a pediatric cardiologist. Once again, the doctors indicated that many persistent murmurs do not cause problems, and can resolve on their own.
While we waited for G's appointment, he didn't show obvious signs of being sick. He was growing and eating well, and was reaching all of his milestones early or on time. He learned how to roll front-to-back at three weeks - much earlier than the average of four months. He was very strong, active, and playful. We had convinced ourselves that he was fine, and were more concerned about his behaviour during the two hour drive to the specialist than the pending diagnosis.
As soon as G arrived in the pediatric ward, he had a melt down. It was likely caused by too much time in the car. The nurse who was checking us in called over a student to show her the hue of his skin, explaining that it was something to look for in pediatric cardiac patients. Bad sign number one.
G had an echocardiogram (ultrasound of the heart) to give the specialist enough information to diagnose his condition. She took almost 80 images and videos, and was insistent that she get shots at even the trickiest angles. She had the doctor come to evaluate the images before she had even completed the set. Bad sign number two.
The cardiologist quickly diagnosed G with Tetralogy of Fallot (Tet), a collection of heart defects that, if left untreated, is fatal by age 1 in 25% of patients, and by age 10 in 70% of patients. G would need open heart surgery, and soon. There was no chance that his heart could repair itself. He had a very dangerous disease.
My husband compared that diagnosis to being hit by a bus. It's an accurate metaphor. The news was sudden, severe, and devastating. The baby was oblivious; we were in shambles. For the next 24 hours, we cared for G in shifts. One of us would play, while the other would try to process our new reality. One of our new responsibilities was to keep the baby calm as much as possible, since crying spells could send his oxygen levels dangerously low. He picks up on the attitude of those around him. All I needed to do was cry, but it was not an option in front of G.
Now, two days after our initial visit with the cardiologist, we are adjusting. The surgeons who will be performing the operation have been described as "Gods" and "among the best in the world." Pediatric open heart procedures have a very high success rate, and G is not among the most severe Tet cases.
So we sit, and wait, and play, and smile, and cry, and worry. Most of all, we live. 100 years ago, this would be a death sentence for our little boy. Today, he will live. Tomorrow, he will live. If we are lucky, in 100 years, he will still live. We live as passionately as we can, because our days together are a gift. We hold each other, and focus on the warmth of that embrace. When G smiles, we record it in our minds; we will need to have it with us when we are waiting for the surgeon's updates, or when we are sent home for the night while G recovers in the ICU.
It's been a rough two days, and the months to follow will be even more challenging. I would love to end on a positive note and write something inspiring, but I just don't have it in me. The wound is too fresh. The best I can do is to point out that with surgery, G has an excellent chance of living a long, full, normal life. Furthermore, he is not currently suffering any cognitive, emotional, or physical delays. For that, we are so grateful.
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