Wednesday, March 08, 2006

Fill 'er up

You gotta fill her up with light!
You gotta fill her up with spirit!
You've gotta fill her up with faith You gotta fill her up with heaven!
You've got the rest of life to face ...
You've got to fill her up with love!

The first time I saw Baby Mia, she was more tubes and wires than baby. At 6 months old, she weighed barely 6 kilos. The very first thing you noticed was her enormous, brown belly. She looked like a python that swallowed a pig. Her arms and legs were little, dry twigs. She lay motionless, a tiny speck in a hospital bed, intubated and sedated.

I was still on orientation to the PICU when I met her. It was the first time I had taken care of anyone so small and so sick. In the beginning, it was all I could do to manage her lines and tubes. She had a broviac catheter in her chest, an A-line and endotracheal and naso-gastric tubes plus several IV's and a foley catheter. Following her surgery, she had a draining T-tube. You see, Mia was born with several disadvantages, some medical and some social. Her mother was a drug addict who never received prenatal care. Mia was born addicted and placed in foster care shortly thereafter.

At a few months old, she became increasingly ill and jaundiced. She was diagnosed with Biliary Atresia, a condition where bile flow from the liver to the duodenum in obstructed. Bile accumulates in the liver causing scarring and liver damage. Without surgery a child will die. In addition, half of all these patients will need a liver transplant by age 2 and 70% will need a transplant by age 20. Mia had had her surgery and was now bombarded with complications: pneumonia and infection. When I met her, she was at her sickest.

Fate, luck or angels had given her one break, and she was named Teresa. Teresa was an older, married woman who had already raised her kids and was now a grandmother. For years she had been taking in medically fragile foster children who were hard to place. Nurses with more experience told me how several of her foster kids had died from AIDS. Now she had 2 children she had adopted, both with developmental delays and multiple medical problems. She sat at Mia's bedside day and night. I remember her as always calm. She was in the middle of embroidering a complicated baby blanket for Mia. In the middle was Noah's ark and the border was made up of all the animal pairs. I can see her now, just sitting in the window seat, pushing her needle through the fabric. She'd look up and when we came in and ask about Mia's progress.

I hadn't taken care of Mia for a few weeks when I was assigned to her again. By this time she was extubated and awake. The change was profound. The minute I walked in the room I was greeted with the biggest smile I had ever seen on a baby. She still had a million things in her or on her and her belly was still the size of Rhode Island, but she was happy. Slowly, as the days progressed, we saw less lines and more Mia. One night my preceptor said she needed a bath. She was still so tiny that we just filled up a wash basin with an inch of water and sat her in it. She loved it. Teresa would help out, go home to her family for a few hours and come back for the night. By now she could hold her and give her snuggles and Mia always had a smile. Sometimes, her siblings would come for visits. She adored them and they couldn't get enough of her.

I couldn't get over it. It made me think about all the little complaints I'd have in a day-my feet hurt or I didn't get a dinner break or whatever. Here was a baby who had only known hospitals and surgery, fevers, being intubated and stuck with needles-I don't know if I'd even want to go on after all that, but here was little Mia smiling through it all. Eventually came the day for her to get transferred to the regular floor. She was listed for a liver transplant, but would be stable enough to go home. She was about 9 months old and still couldn't sit up or crawl and she didn't really make any sounds but she could light up a room with that smile. I didn't know if I'd ever see her again.

Eventually, I left the PICU to become a transplant coordinator, a job I had wanted since nursing school. One day I went back to the hospital to pick up some things. I ran into Teresa, Mia and the whole brood on the elevator. Mia was then 6 weeks post transplant. Someone's gift had given Mia a new life. She looked like a new baby. She was chubby in all the right spots and her huge belly was gone. She was sitting up and reaching for things and cooing. And she still had that radiant smile.

There are days my glass is half full and days it's half empty. There are even days when I think my glass is dried up and I remember Mia, whose glass is always overflowing.


Vinc3nt said...

Wow... that's a wonderful story!

Anonymous said...

What a beautiful story.

Impatient Patient said...

I am crying right now! My sis has a personality like that- over eighty operations, and the sunniest personality on a teenager ever. Like WInston Churchill said- NEVER NEVER NEVER Give up!!

Keith, RN said...

Wow is right! This is a profound story, wonderfully and compassionately told, and I feel blessed simply to have read it. Thank you!

Anonymous said...

That is wonderful. Today's problems seem substantially lighter. Thank you.

Kim said...

You know what? I have no problems at all. Thanks for a beautiful story and a new perspective.

Anonymous said...

Ohhhh the memories that story brings back my Caden was thought to have BA and had 2 Kasai opperations done. He was just transplanted in April for PFIC 3...he's always smiling.
Christi & Caden

Jonah said...

Thanks for your post, quite worthwhile material.
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