Don’t you hate it when you actually have time to gather your thoughts? No one demanding anything of you, no one distracting you, no one. Everything around you stands still and you’re consumed by your own thoughts.
Today as I waited for Jason at the UCSF circle, I realized that I’d be there once again soon. Oh, how I dreaded that idea! But that thought was drowned out by the thought that it’s almost one year since Christopher was diagnosed with biliary atresia. The wounds are still fresh but yes, it’ll be a year on August 28th.
The boys were scheduled for their 2-month well-baby visit. But because of scheduling conflicts, the boys were approaching the 3-month age. We saw Dr. Breder on Thursday evening. The appointment consisted of the routine questions every pediatrician asked of babies at 2 months. We mentioned our concern that Christopher’s skin presented a yellow tinge that wasn’t there when we took him from the NICU. She assured us that it can be a number of things – we’d have to get blood drawn for labs to know for sure.
Come Saturday, we reluctantly took Christopher to the lab. I wasn’t quite sure how they would draw blood from a little newborn and they weren’t too sure either! They had to stick him twice and being Christopher, he screamed bloody murder! Poor baby didn’t know that’d be the first of many blood draws.
August 28th, 2006, a Monday afternoon, was a busy day at work for me. I had just returned to work when the boys turned 8 weeks – that’s all that was truly paid for (thank you LandAmerica for maternity leave!). Of course my return back was eventful. In the earlier week, I went to the ER because I had fainted due to dehydration supposedly. I think it was related to the bad hives I broke out in for two days. Who knows?
Anyways, Monday afternoon was busy. Then I received the call that would stop everything as I had known it. It was Dr. Breder. The results of Christopher’s labs were NOT good (his bili levels were elevated beyond belief) and I had to get over to UCSF stat – there were speciailsts there that could accommodate us. For what?
I left work, called Jason to meet me at home, and we took Christopher to UCSF. Dr. Rosenthal had waited for us and explained that he was THE liver doctor and that the word “liver” has the word “live” in it for a reason – you need it to live. He then explained that we would be admitted because they wanted to do a liver biopsy on Christopher – he suspected that Christopher did not have bile ducts.
They stuck the IV in Christopher’s top-hand, instructed me to stop feeding him at 5am, and that the liver biopsy was scheduled for Tues. afternoon. “Get some rest.”
Jason and I were floored. A million questions and emotions surged simultaneously. That was OUR baby! How? What? Why? Was it our fault? We decided that I would stay with Christopher as I tried to figure out how to keep a newborn (who eats every 2 hours) satisfied. This in itself was stressful.
Tues finally came. I had no sleep and my poor Christopher was starving. We had a ultrasound scheduled Tues morning and every time the technician gave me the eye for not calming down my kid, I could have lept across the table. “Don’t forget his organs are on the other side. He’s situs-inversus.” Counting down to the scheduled biopsy was like pulling my toenails off because my baby was screaming and could not be consoled. He could have eaten a horse and the barn!
We eventually got into the procedure room. They numbed the side of his body, stuck the stick through and collected a sample of the liver. We went back to our room and after more waiting, I finally got the approval to feed him. Can you starve yourself for 12 hours?
As suspected, the biopsy did not show any bile ducts but thankfully his liver didn’t show signs of cirrhosis either. His poo was acholic (off-white) because bile was not flowing out. He was yellow because bile was stuck in his body poisoning him.
Dr. Rosenthal took Jason and I aside to tell us the options. There wasn’t really an option – the Kasai surgical procedure had to be done. They were going to connect the intestines to the liver to drain out the bile. This had a one-third chance of working. I remember asking, “Why do this procedure with that kind of success rate?” “Why can’t you just transplant?” Their answer: the Kasai is the first step and that it’s difficult to get a liver donor. Makes sense I guess.
Weds was limbo day and the longest day ever.
Thurs was the supposed Kasai surgery day. Given that Christopher’s Kasai procedure was urgent and an emergency, we had to wait to see if the surgeons could squeeze us into the schedule. Christopher fasted again and surgery did not happen on Thurs. With all the emotions in those 2 days, I was pissed! Starve my kid for another 12 hours only to find out the surgery wasn’t going to happen?! If you could only hear me that day….
Friday came, Sept 1st, and this was it. Christopher was wheeled down to surgery and I could not let him go. I couldn’t fathom being without him. So tiny and yet so strong. I cry now remembering it.
The waiting period was a blur.
Surgery was finally done and we were taken to the Pediatric ICU. I didn’t wanna see my baby like that but he needed his mom. “Be brave for your son, Jenille – your baby needs you.” I walked over to his crib and didn’t even recognize him. He was swollen and fat. The nurse explained that when you open the body during a surgical procedure, your equilibrium goes out of whack. He had tubes coming from all his extremities. He was crying with his eyes open catching my eyes as they started to tear and not stop. I tucked into Jason and we cried together emotions ranging from fear to despair to anger.
It was the worse moment thus far and as I sat with my thoughts today, I knew that I’d have to relive that nightmare again. To see the hospital was not a good association. I associated the hospital with a dark time in our lives; ironically the same hospital where I gave life to all my boys. And the tears started rolling again.
Then I remembered that my Chris-Chris got through it the first time and that he’d do it again. He bounced back in no time and every day he improved surprising the medical team. They say babies are quick recoverers because their bodies are still “new” and Christopher was a prime example. My lil fighter!
I truly admire Christopher’s determined spirit. As I said before, I’m thankful it was Christopher and not his twin, Evan. Christopher reminds me every day to be strong too. He’s my lil hero.
