Two years ago I kissed my 4 month old baby girl and watched her fall to sleep as they anesthetized her for her surgery. I was then escorted back to the room we had spent the previous week in to get our bags together and meet my family and friends in the surgical waiting room. Upon returning to the room, I remember collapsing in tears. One of the few times the reality of the situation had time to catch up with me.
Meanwhile, Ryan was already "asleep" in the operating room; a piece of his liver being removed to be placed into our beautiful baby girl.
We spent about 7 long hours in the surgical waiting room. My wonderful parents, Ryan's amazing Aunt Sue-Sue, our fantastic friend Janeth and I. An attendant came in every so often to inform us of the progress. I don't remember a whole lot about that time, now...
I remember going to visit Ryan in the ICU. He was so swollen and pale. Even his lips were white. He had various tubes and wires: IV's, breathing tubes, a tube in his mouth, a tube in his nose, a tube coming out of his side.
Kai was also swollen and very pale. Her body so tiny in the big bed, wrapped in three times as many wires as her daddy, tubes and bandages, like a web.
That night, in Kai's room, doctors and nurses rushed in and out all night. Machines beeped and alarmed. A tube coming from her side continually filled with blood and needed to be emptied. Blood transfusions were given repeatedly. I asked if this was normal and, though their mouths said that it was, their eyes told another story.
In the morning the surgeon told me another surgery would be needed to repair the cardiovascular system around her liver. She was bleeding out into her abdomen and the liver was not getting enough blood. He'd been up all night thinking about how to do it. He promised me she would be okay and I believed him. And, so, they took her into surgery again. I went to sit with Ryan until my family showed up. Hours passed and we had many wonderful visits from friends that helped pass the time. Then, the surgeon came out and told me she was okay!
It was a couple weeks before she would wake up. She was on a respirator because she'd suffered a collapsed lung. At first, when she did, she cried weakly. She was in a lot of pain. Eventually her pale body turned pink, her eyes brightened and she was smiling again.
The following months and year were a challenge. IV lines, feeding tubes, 20+ medications, twice-weekly trips to Georgetown for blood draws and clinics, home visits from a nurse...
I remember things in little blurry patches, like dreams. A lot of it all runs together. Sometimes a memory wells up out of no where and takes me by surprise and I have to stop and wipe away tears. I'm pretty sure I have some form of PTSD.
She has come so far. Sometimes I wonder if my constant reminders of what she has been through is tedious for my friends and family. But, then I think of how amazing it is and how amazing SHE is and I just don't care. I want everyone to know!
We were just released from yet another week-long hospital stay because she caught a tummy virus. The bruises on her arms and hands from the blood draws are a constant reminder of how fortunate we are. She has made it 2 years but there is always the threat of rejection looming in the background.
I think of the 6 year old boy, Zachery Elsenpeter, in Minnesota who is in rejection and only has a 3% chance of finding a match this time. That could be Kai. I am constantly reminded of how blessed I am, how fragile life is and how the generosity and compassion of others is so precious and necessary in this world.
On this, the 9th day of April, Kai's 2 year Transplant Anniversary and the month of
Organ Donation Awareness, coincidentally, I urge you to consider being an organ donor. Go to www.donatelife.org, find your state registry and sign up. Let your friends and family know. It's that easy to save lives.
Thank you to all who have supported us these last 2 years! We feel gratitude beyond words for all the love and kindness we've been shown. It truly means so much!
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