The Missing Pictures

A post from Kristin:

The day that we first left the hospital, Jason and I were so anxious and excited to go home that we dropped the camera and broke it. Actually, Jason dropped it and broke it. When he gets stressed, he tends to drop things, especially his cell phone and Sam’s binkies. But this time, it was the camera. Since we were subsequently unable to document Sam’s exodus from the hospital, Sam’s two and half days at home, and Sam’s return to the hospital, I would like to try to use my words to recreate some of these missing photos:

The Day that We Left:

Jason and a hospital volunteer packed our 6-week-lifetime into the red Children’s Hospital wagons. They’re just like regular Radio Flyer wagons, but they have IV poles rising up from the back. I stayed with Sam as Jason and the volunteer wheeled our hospital life to the newly washed and vacuumed car, complete with a carseat base in the backseat.

The room emptied out little by little until it was finally just the three of us—Jason and I looking around, feeling as though there must be some piece of us accidentally left behind and the room, and little Sam buckled safely into his brand new carseat. We knew it was safe by the way, because we (A) watched a video on carseat safety, (B) read a packet on carseat laws, and (C) had the nurses check the straps repeatedly. As we walked out, the nurses and doctors played the “So long, farewell” song from The Sound of Music. I had them gather around the desk and tried to take a picture, but as aforementioned, the camera was broken.

The Moment We Stepped Outside:

Sunlight found Sam’s face for the first time. He flinched and squeezed his eyes closed. For the first time in six weeks, I paid attention to what the hospital looked like from the outside.

Sam’s First Car Ride:

He fell asleep. His chubby little cheeks rested on his brown and green striped fuzzy pajamas as I repeatedly checked to make sure he was breathing.

I have to admit that I had envisioned our first trip home as a glorious voyage—an epic homecoming in which the clouds would part, a rainbow would stretch over our little townhome, and the three of us would enter our sunny living room and breathe a sigh of relief to be home.

Instead, it went like this: The pharmacy that was supposed to have his heart medications was inexplicably empty handed, forcing us to rush to three different pharmacies before they closed. Like dominoes, the pieces of my perfect imagined homecoming knocked each other over one by one. As Jason argued with the pharmacist inside the Kaiser building, I tried to console an increasingly anxious Sam. Discovering that he only stopped crying when I drove the car at least 35 miles per hour, I had to exit the parking lot and drive around the block about 15 times, singing the alphabet song.

So by the time we actually got home, it was a half hour past Sam’s feeding time, it was almost time for his meds, we had a car full of our hastily packed stuff, and Sam had pooped himself.

The next four hours were a whirlwind of chaotic bottle preparation, med pulling, and G tube pump set-up. The rest of the night consisted of Sam waking up crying every 30 minutes, and Jason and I taking turns having mental breakdowns.

When I “woke up” (did I ever actually sleep?) the next morning, I turned to Jason and said, “That baby just kicked my ass.”

Sam’s Second Night Home:

I wrapped him up in a fuzzy blanket, no wires or tubes tethering us to anything, and snuggled him as long as I pleased while the three of us watched my favorite episode of Scrubs. It ends with the song, “Somewhere over the Rainbow.”

Sam’s First Clinic Appointment:

After reviewing Sam’s heart echo, the doctor said, “I’m going to couch the conversation like this: We’re going to have to readmit you to the hospital.”

“Today?” I asked.

She nodded and showed us a video of an ugly little vegetation that swung back and forth like punching bag outside Sam’s heart valve.

Sam’s First Night Back in the Hospital:

The nurses took sad and loving care of us, as did our friends. Tears rolled down one of our favorite physician’s cheeks as she described the dangerous potential of this growth in Sam’s heart. I cried into Sam’s smooth little neck because I had promised him—I promised him that life would get better, and now here we were, facing days and days (if we were lucky) of IV pokes and trying to snap his pajamas around so many wires…

But Sam, the little fighter, slept peacefully on my shoulder, letting out little smiles in his dreams.

And Now…

We’re waiting for many answers, and we’ll be waiting for a long time, but the blood cultures have at least told us that the very rude bacteria that has obnoxiously invaded my son’s tricuspid valve is called enterococcus faecalis, and luckily, it’s responsive to three different antibiotics. But these antibiotics do have their own side effects, including permanent deafness, so I asked for an infectious disease consult.

I have to brag for a moment here: As I asked the infectious disease doctor questions this morning, he asked me what field of medicine I was in.

Anyways, we’re hoping that the antibiotics do their job without wreaking havoc on the rest of Sam’s cute little body. In the meantime, we’re enjoying every single minute with him.

Here are some pictures of the fun the three of us have been having for the past few days (taken with our new camera):

Sam's onesie in this photo is a gift from Susan (and a favorite among the doctors here):

Self portrait:

These next photos are from what I call "The Blanket Series."

Big yawn!

Sam and Wubbie:

Most important update of the week: Sam has started smiling--big, open-mouthed smiles. I have yet to figure out what prompts these unexpected grins, but I'm working on it. As soon as I capture one of these elusive smiles on camera, I'll post it. In the meantime I'll describe this missing photo like this:

His blues crinkle a little as his milk-crusted lips curl up like a wide and slightly crooked heart, exposing pink gums and naked happiness.