Sunday, April 11, 2010

Day 2- Sunday, August 9th

Kris works every Sunday. Even though Jonas and I were still in the hospital, Kris had already missed one day of work, so he decided it was the best decision for us financially. We kissed each other goodbye at 7:00a.m., and the baby boy and I began our day. I spent the next hour or so dozing off, cradling him in my arms. Around 8:00, a nurse came to take him to the nursery for one more round of check-ups. I bode my time checking facebook, watching the morning news, and sending Kris text message updates. A doctor came in around 8:45, stating that Jonas looked a little ashen, blue even. He told me Jonas would be transferred to NICU, and put under an oxygen hood to "see if he would perk up a little bit". I hadn't noticed anything wrong, and the doctor assured me it was probably just an infection that many mothers have and pass to their babies during delivery. Hours went by, and I struggled with whether to ask Kris to leave work. It could be such a minor thing, and I didn't want to overreact. Kris decided it was best to just come back to the hospital. I called NICU to get an update, and a nurse told me they were going to check Jonas's heart. I didn't think much of it. If something was wrong, wouldn't it have been caught on the ultrasounds during my pregnancy?
Kris finally arrived at the hospital, and NICU asked us to come up and speak with the cardiologist. That's when I knew something was seriously wrong. My own heart sank to the floor. Kris tried to reassure me that it was probably no big deal. But I knew that if the cardiologist wanted to speak with us directly, something was wrong with Jonas's heart.
We scrubbed up to enter NICU, and there was Jonas, laying under an oxygen hood. His tiny chest was rising up and down so rapidly, and he did indeed look pretty blue. I stroked his arm and leg, and talked with him while we waited to speak with cardiology.

She began by telling us that Broward General was not equipped to handle Jonas's condition. It was called Hypoplastic Left Heart Syndrome. It is a rare congenital heart defect that basically means he was born without a left ventricle. The symptoms are often not seen until 24 hours after birth. Kris and I were floored. We both broke down in tears as she explained everything, drawing out a diagram, handing us paperwork detailing his condition, and answering our questions. We held onto each other as tightly as we could, then asked to see Jonas again. We cried long and hard, staring at our beautiful little boy as they hooked him up to a ventilator to support his breathing. We talked about what it would be like for him, for us, and hugged and cried some more.

We decided to take lots of photos, even as I cried through each of them. We wanted to document all of this experience, no matter how painful, so we could show our son when he got older exactly what he went through.

In this one, you can see me wiping tears away and Kris manages to still be the proud daddy that he is.

This is one of the only photos we have of Jonas up-close pre-surgery:

We talked to our son gently, explaining to him that he'd be taking a helicopter ride to Miami Children's Hospital. We told him that most people don't ever get to ride in a helicopter, and daddy said he was jealous. We knew he couldn't understand what we were telling him, but it felt better just the same.

LifeFlight came and introduced themselves, and we sat and looked on while they got Jonas all packed up for his flight.

Around 6:00 in the evening, our families stood by the window to my hospital room, and watched Jonas's helicopter take off for Miami.

The hospital room we paid for came with a fancy dinner with white tablecloth service, and so I tried to focus on eating and taking care of myself to be strong for Jonas. I had rack of lamb, lobster stuffed baked potato, something else that escapes my memory, and cheesecake. It was actually really tasty for hospital food.

I was discharged early, and we went home to gather up clothing and toiletries to take to Miami. We decided to sleep at home, not knowing how long it would be before we could do so again. We talked a little, and I curled up with the boppy pillow, staring at the photo of Jonas's face on my cell phone as I cried myself to sleep.