About a week later, Viv’s routine of beginning to eat eagerly and then arching her back and screaming after a few minutes increased in frequency. She began to refuse most feedings after an ounce or two. A baby her size needs almost thirty ounces a day. By two weeks after the procedure Viv was down to ten, and she’d gone from wetting about twelve diapers a day to one. We called the GI specialist whose staff sent us to the emergency room. The folks at children’s hospital admitted Viv that night for observation, hydration, and testing. They assembled a team including two general pediatricians, two cranial facial pediatricians, two endocrine pediatricians, and two new GI pediatricians, leaving us feeling like we ought to pair up and find Viv a mate before the flood. Two days later V and I found ourselves in radiology waiting for a pretty cool GI exam. The radiologist feeds the baby liquid containing an isotope, straps the baby to what is essentially a spit, and then rotates the baby as the liquid makes its way through the GI track, taking x-rays periodically. Before the technician even offered Viv the bottle, he took a control x-ray. It revealed that a length of Viv’s bowel resided in her chest next to her left lung. The rest of the test showed that a portion of Viv’s stomach got sucked up through a hole in her diaphragm (a Morgagni diaphragmatic hernia, for the curious) and into her chest each time she ate. The radiologist immediately beckoned a surgeon who assured me that they’d found the cause of Viv’s problems, that the operation to fix it carried about the same risk as an appendectomy, and that V would be eating like a normal baby within five days. As you can probably guess, I couldn’t hold back sobs of relief. Within four hours E and I dropped Viv off in the operating room, scared but almost giddy with the belief that she’d soon be cured.
For about two days we cared for a groggy but pain-free little angel. Then we stopped the oxycodone, and all her problems returned. The attending surgeon assured us that had her hernia been the primary cause of her discomfort those symptoms would now be gone. To our dismay the herald of this news was none other than the husband of our terrible first pediatrician. A-w-k-w-a-r-d!
We thus began our second week in the hospital with no more answers than we possessed in the ER waiting room. The doctors ran a few more tests while Viv recovered from her surgery but came back with nothing. After a brief bureaucratic dust-up (since the surgery department refused to let Viv leave until she gained weight but the attending GI doc wanted her care continued as an outpatient, they transferred her to the medical service which promptly discharged her), they sent us home with the drug that benadryl rendered obsolete, hoping that the side effects of sleepiness, relaxation, and increased appetite would be enough to get Viv eating. Would that it were. The medicine we termed “pot drops” only made Viv drowsy, and within a few days her weight fell to a new low: the first percentile of weight for length. Since the third percentile apparently marks the threshold where failure to thrive threatens neurological development, we had to return to the hospital for placement of a feeding tube and observation.
Viv now eats almost all her meals through a feeding tube which Ian heroically replaces whenever she pulls it out, weathering her screams like a medical professional. She’s gaining weight like a champ, recently passing the thirteen pound mark. Preserving Viv’s brain development certainly takes priority, but Ian and I find little cause for celebration. Viv continues to writhe in pain, her feedings take as yet unparalleled effort (we have to offer the breast, put away rejected breast, offer bottle, pour rejected bottle milk into feeding tube pump, prime pump, check placement of her tube, start her pump, set up my pump, entertain Viv while we’re both tethered to machines, attempt to stop her pump before she vomits, clean up vomit, and wash all necessary parts before we start over – not to mention the constant surveillance and re-taping necessary to keep V from pulling out her tube between feedings), and we now alternate sleeping since Viv wakes up at least once an hour and often every ten minutes or so at night.
Only one person outdoes Charlie and the grandparents: the little darling herself. Throughout all the pain and procedures, Viv offers huge, gaping smiles with a determination akin to those people paid to give out fliers on the streets of big cities. She charms every doctor and nurse, listening intently to their speech, offering her additions, and flashing that huge, ruthless toothless grin. The day after Thanksgiving she laughed for the first time, issuing a surprising dolphin-like cackle that Ian and I now seek out like drug addicts going after a fix. Effortlessly, my little patient replenishes my reserves of patience.