Susanna's Journey

Most of you know about our emergency return to the States on November 31st to seek healthcare for Susanna. Since then it’s been quite a ride, and because of all the craziness, I wasn’t able to write any entries about it. But now that she’s better I thought I’d catch you up on her journey…
…So there we were in Asia, settling in, making friends, learning the language. Two happy kids who were adjusting well. And then one started being not-so-happy. At first it was just ever so often, and then it was more and more—fussing, wanting to be held, not wanting to play… Teething, I thought. Or gas. Or something I ate that didn’t agree with her (and man, that could have been anything over there!). You know how it goes. It could be a thousand things with a baby, so you just go through the list in your mind. And you give Tyelnol. Or you give gas drops. Or you just chalk it up to a bad day and hope tomorrow’s better. But as time went on, and there were fewer and fewer “better” days, I grew more and more concerned. We felt how tiny she was, and in light of all her other symptoms we decided it was time to have her checked out.
So we took her to the one resource we had—a clinic run by American doctors as a charity to the locals. She was 8 months old exactly, and weighed 12 lbs. 10 oz. fully clothed—had gained only 2 oz. in the last month. The doctor ordered some blood work, and I took her to a local hospital—quite an experience—thankfully an Asian friend was able to go with me and translate. The doctor at the clinic analyzed the test results and said she’d possibly had a bout of Hepatitis A. Made sense to me, all things considered. I felt relieved and hopeful that she would gain weight as we followed doctor’s orders to increase her food intake, just as we wrote in our last November entry.
But over the next couple of weeks, as she ate more, her symptoms worsened. She was so lethargic and cried sooo much. She had no desire to play and was smaller than ever. I held her all the time (the only thing that seemed to ease her) and my arms never got tired. When we would change her diapers or put her clothes on, we would just break down in tears as we looked at her. She was so pale and pitiful—you could see every little bone. She looked like a baby on the Save the Children commercials, literally. My heart breaks even now as I remember her—so precious, so sick—and the overwhelming feelings of fear, frustration and dread, not knowing what was wrong, not knowing what to do, and not having the resources to help her get better.
So I did the only thing I knew to do and took her back to the clinic. My heart sunk to the pit of my stomach as the doctor weighed her; in spite of eating more she had lost weight—1 ½ pounds in 2 weeks. He ran a couple more tests, and then he advised us to seek aggressive medical care either in another part of Asia or back in the States. We were more than willing to do whatever we needed for our precious little girl, and so the whirlwind began… Emotions, decisions, arrangements, sorting, packing, saying goodbye, traveling, traveling, traveling, and then there we were in the ER of the children’s hospital, only 2 days later.

There is nothing more terrifying than holding your sick child and wondering how much longer they will be there to hold. Fear, anguish, panic, helplessness—words can’t really describe it. We’d spent the last 48 hours nearly numb with shock as we said goodbye to our new home, our friends, our lives, not knowing whether we'd be coming back. But as they placed Susanna—our 8 and a half month old precious joy, who should have rolls of fat and boundless energy to crawl and play and explore the world—on the scales and she weighed only 10 lbs and 12 oz, an overwhelming dread came over us. She was starving, right before our eyes. Our once smiling, plump, contented little girl was now terribly gaunt, pale, lethargic, and so very, very fragile. Yes, it was absolutely terrifying.
That night in the ER was so long. Soooooo long. Especially for Susanna. It took three nurses, four blown veins, and over an hour to finally end the excruciating quest to draw blood; and after several more hours of poking and prodding, x-rays and ultrasounds, she was admitted to a room at 5 am, where we tried to get a bit of rest between visits from doctors and nurses.

That room was home to Susanna and I for a week. I treasured the time I was able to spend there with her, rocking, nurturing, and holding her ever so closely.

They ran test after test, and as the days passed, I began to feel more confident that we were closing in on a diagnosis.

Wednesday and Thursday, however, were difficult days. Though Susanna had shown some improvement, the doctors were not satisfied with her weight gain, so Thursday she had an endoscopy and was put on a feeding tube.

But Friday brought good news—a diagnosis that was easily treatable and most likely temporary. The preliminary results of the endoscopy showed that she had an allergy to dairy protein—that it was damaging her intestines so that she could not absorb the nutrition that she was taking in. Just a simple change of diet would send her on her way to health. What an incredible relief!

It was surprising how quickly things progressed from there. She responded very well to the feeding tube and the new formula, and Friday evening they released her from the hospital.

The tube took some getting used to for all of us—she had to adjust to having something in her nose constantly, and we had to adjust to feeding her around the clock—mixing formula, running the pump, managing her feeding schedule, cleaning up leaks, and putting the tube back in when she pulled it out (not fun!). It was quite a job, and a time-consuming one at that—we pretty much arranged our lives around her feedings for that month.

But week by week she gained more and more, and her strength and energy returned. On January 5th the doctor said she no longer needed the tube. She was eating enough on her own, her system had recovered well, and she was doing great. Wooooo hooooo!!!

Susanna is now a totally different baby than when we left. We never imagined that not even three months later we would be returning to Asia with a 16 ½ pound, totally normal, energetic, healthy baby in our arms. We will never, ever take that for granted.