Sketches, Part One

The news was disappointing.  About two months after her Kasai surgery, Annaka’s bilirubin levels are almost back to where they were before the procedure.  Although she is gaining weight—slowly—and is fully capable of smiling and gabbing and seems very interested in the antics of both her siblings, the reality is that she is sick.  Her liver is not working.  The surgery designed to maybe fix what was never really broken but was just never really there in the first place—her bile ducts—is failing.  According to her surgeon and her G.I. doctor, she will most likely need a liver transplant before she is two.

It goes without saying that we were hoping and praying for much better news.  Many, many people were hoping and praying.  Now our goal is about nutrition.  Getting her to gain weight, however, which will make her a better candidate for a transplant, is much easier said than done.  For one, her liver issue means she metabolizes calories much quicker than normal, which is cool if you’re an adult but not so much in an infant.  Also, she does not have a good appetite anyway, which is then complicated by the excessive fluid in her tummy.  (This is an added symptom of liver failure and portal hypertension)  The goal is to get four ounces of milk into her every three hours, which is a particular challenge, since she takes about sixty minutes to drink those four ounces.

Despite all this, though, we are remaining hopeful, which is scary in itself.

Because we’ve been hopeful before.  We were hopeful on New Year’s Day, when we left the NICU two weeks after she was born.

We were very hopeful on January 28^th, the day we visited Childrens’ Hospital for her one month checkup, after getting great news from the cardiologist and the surgeon who fixed her who told us we could stay away for an entire year.

We left the hospital that day, believing, sincerely believing, that a difficult chapter in our lives was over; that we had made it out of a rough patch of wilderness and now we were walking in the sunlight.

But then that meadow caved in, and the bright blue sky became a speck leaking into a hole.

Despite the diagnosis of Biliary Atresia, we remained hopeful when they wheeled her into surgery for the second time, this time to connect her liver to her small intestines, and also when she came back out with a crescent shaped scar across most of her stomach.

So the question needs to be asked, and maybe even answered:  why keep hoping?  Aren’t you disappointed when things turn out bad?

Well, yeah.  We are extremely disappointed.  Our baby girl was born with a liver that hardly works.  If it isn’t healed, she’ll die.

But here’s the deal. Wouldn’t the news be just as disappointing if we hadn’t hoped?  Is the level of disappointment worse than it would have been had we just assumed the Kasai procedure would not have worked in the first place? 

On March 1^st, she had a surgery to fix her liver.  Four weeks later we found out the surgery might be working.  On April 26^th, we found out the surgery is not working.  That’s over fifty days that we chose to be hopeful, that we chose to be optimistic, that we chose to believe in the best possible outcome. 

Because the reality is, Annaka needs people smiling at her and singing to her, not crying in the corner of darkened rooms.

It just seems that trying to remain hopeful is an entirely rational reaction to what is happening.  As we continue to stumble around in the dark of this unmapped cave, hope becomes an essential response, almost like a flashlight getting us from point A to B, from Monday to Friday and back again.

Fortunately, we are not and have never been stumbling by ourselves.  We continue to be blessed with a providential peace; we continue to walk by faith, not always by sight.  At the risk of forgetting someone, we won’t mention names, but the outpouring of support from our family, friends, church, and colleagues (many of whom are actually friends we’re just fortunate enough to work with) continues to be overwhelming and humbling.  Just in the last week we have had relatives mow our lawn, clean our house, and pitch in for a much needed deep freeze to store the absurd amount of Annaka’s milk.  We’ve had a crazy amount of food given to us, often brought to our door steps, and we’ve had an embarrassing amount of medicine-money just placed in our lap.

Not to mention all the prayers, not to mention all the hours put in by both of our mothers, who have reminded us in a way we can’t quite fathom that parenting is not a part time job, nor is it something you someday outgrow.