Tuesday, May 3, 2011

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.

19 comments:

  1. He's gorgeous. So thankful it's treatable! Where can I mail you a camera? I am serious. A post office box or hospital? (don't give your home address to weirdos on the internet)

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  2. Kakos, you are so brave and so strong! I know that one day there will be a glorified ride home with rainbows and clouds parting and sun shining and everything you deserve! Maybe it won't be until the day you're all driving home after a big game when Sam was the MVP, but one day it will happen just like you've imagined! Between now and that day, I hope that your hospital visit is short and that life gets better soon so you can have more snuggle sessions watching Scrubs on your own couch! Make sure that this time though, you hold the camera and take pictures of the wagon and the crowd of nurses.... document every moment of your grand departure so that you never have to come back to document it again! Sending lots of love and prayers from Chicago.... xo

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  3. Praying for your little guy and your family.

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  4. Those pictures are adorable!! He looks like a real boy with a personality now (not just a cute little baby)!

    I can't wait to see you all again, but for now I have a cold, so it will have to wait. But I am thinking about you guys! Hopefully I can see you at home soon :)

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  5. Keep fightin' the good fight Sam!

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  6. As usual, Kris, your writing makes us laugh out loud at times, and cry at times. We're thinking of you guys constantly and hoping that enterococcus gets the heck out of Sam as quickly as possible. Miss you!
    Love, allie and julie

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  7. Sweet, sweet boy - loving how despite all the ups and downs, and how sick he is, that he just keeps on plugging along, determined to make the best of all life has to offer him right now, and smiling through it all, he will come out the victor in the end. You go, Wolfie, you go.
    Continued prayers for a speedy recovery, and peace and strength for the both of you. NKL

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  8. I am praying so much for little Wolfie/Sam. He is such a strong little fellow, I wish I could have his strength. Sending lots of love and positive thoughts!
    -Sabrina

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  9. Wolfie looks adorable in the photos. That poor kid has gone through a ton in his short, short lifespan; more than any human would willing put on himself. I know everyone at the hospital has a lot on their plate since the growth was discovered and, while I know it was an inconvenience, at least the doctors discovered it before all hope was lost. I hope that the antibiotics have the desired effect and nothing more. Then, when you finally can head home for the last time, I hope the car ride is the epic journey you envisioned the first to be.

    I cannot stress enough the impact that hearing of your triumphs and heartbreaks both through this blog and through the time I've been with you in class has had on me. As sad it can be to read about the many setbacks that have occured the past few weeks, the snail-in-a-well analogy holds true; no matter how far the snail falls back, the snail always presses fowards in spite of these pressing odds. No matter how deep the well and as much as he's fighting a literally uphill battle as it seems, the snail will eventually make it to the top of the ledge and be freed from its cylindrical prison. The strength the entire Leclaire clan is truely awe-inspiring and I hope that it pays off as you continue to ensure that Wolfie lives a healthy life.

    At approximatly 8 AM tomorow the entirety of your AP Lit class will enter the Easter building to take the AP exam that you have worked so hard to prep us for. While I know its tempting to add this to your already full plate, do not let us worry you in an already stress filled time of your life. You have done everything in your ability to get us ready for the exam and we can handle whatever the College Board decides to throw at us. That said, I know I speak for the entire class when I say that we wish the entire Leclaire family luck in dealing with Wolfie's ordeal. Throughout the damage I shall inflict upon the exam (or, though I hope it is the other way around, the exam will inflict upon me), Wolfie will constantly be in the back of my mind, remind me of the strength, courage, and perserverence I need to ace this exam.

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  10. Jason and Kristin - this is the first opportunity I've had to view your blog since Sam's birth, and I have to say that I am very touched by the incredible journey that your family is enduring. It sure puts life into prospective. I wished I could have had an opportunity to say goodbye in person Jason, but my family and I desperately needed to be together (as you can understand all to well). I hope to be able to meet Sam sometime when I venture back out that way for a vacation. Please take care of your adorable family and yourself!

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  11. I can't believe how much Sam seems to have grown in the last two weeks! I wish I could come hold him again. Here's to antibiotics - and to more big smiles. :) Thinking of you guys.
    Love, Carolyn

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  12. I have to agree with everyone else that he is really looking like a little person. I have tear filled eyes as I read the news of the antibiotics doing their job. Thanks for letting so many of us be a part of your journey~and I thought our first night home with each baby was rough, man was I wrong. You guys are truly rock star parents! Can't wait to see the mouth open smile pictures.

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  13. We think of you all often and continue to pray that the antibiotics do the job they are designed to do and eliminate the infection slowly but surely. Sam is looking so cute...5 weeks seems to be the turning point between unresponsive newborn to smiling, happy baby aware of the life going on around him. Love it. And, I had to laugh at your story about Jason dropping the camera. A few years ago, a week after I got my brand new canon, my husband proceeded to shoot it with a bb gun (accidentally of course). I can only imagine what the repair men thought when they open up the package and saw a metal bb lodged in the LCD screen...

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  14. just wanted to say that you're always in my thoughts.

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  15. Your writing (both of yours) is "almost" as beautiful as your precious Sam...truly, it is gift you give us all! The focus, the reflection, keeps us hitting the refresh button wanting another update. Like the good teacher you are, you encourage us to write, to tell our stories (Cara, yours made me laugh out loud), and to connect. With love and prayers to little Sam!

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  16. Hi Kristin I've been following your blog with such a pendulum of emotions . . worry, love, and pride at how you and Jason handling all of this. Watching Wolfie grow is amazing. he's becoming such a little person.
    Love
    Aunt Sharon

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  17. Tammi T. (mom of an HLHS boy)May 5, 2011 at 1:08 PM

    I love the vivid descriptions of the "photos-that-should-have-been". I also enjoyed the photos with the new camera, especially the ones from the "blanket series". I can't wait until you're able to capture the elusive smile. ;-)

    We continue to pray that the antibiotics will do their job in the best way. We're also praying for you.

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  18. Dear Kristin,

    Well, you fooled the doctor into thinking you were a member of his profession, but I'm so proud that you're a member of the teaching profession. You bring all of us such honor. Your writing is vivid and succinct and makes me laugh and cry.

    Also, Sam looks so much like you!!! Here's hoping that all three of you continue to smile and to thrive.

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  19. (From your students at CT)we are more than glad to have you back!

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