Being patient

As most of you know well, patience ranks high on the list of valuable attributes I never quite managed to acquire prior to Vivienne’s birth, probably falling somewhere between tranquility and respect for others’ privacy.  I’m not just talking about waiting in long lines.  My impatience drove such extreme multi-tasking as playing tennis in a bikini with my sister so that I could check tanning, exercising, and bonding off my to-do list at the same time (I suppose I came full circle since I originally took up the sport in order to justify wearing tennis skirts).  The last five months of struggling to do my best by Viv, to minimize her pain when I can and console when I can’t, taught me patience.  Who knows if the effect will have any staying power, but for the time being I pour my all into accomplishing one goal at a time and feel satisfied when an entire day goes by and I can only credit myself with achievements such as “eat” and “feed baby.”  I’m trying my best to impart this new skill to my daughter, but Viv still struggles with the concept, even refusing to heed such reassurances as “just a minute honey” and “I’m doing my best here.”  Go figure. 
 
Of course there’s a bigger accomplishment of which to be proud:  managing to cling to my sanity despite five months of uncertainty, frustration, powerlessness, and, increasingly, fear.  When I last posted, milk protein allergy reigned supreme after replacing infant reflux as the medical theory of the month.  Our GI specialist (formerly known as Dr. Answer to Our Prayers, now more modestly termed Dr. At Least Tried To Help Us) told us to be patient and wait six weeks for Viv’s bowels to heal now that the elemental formula had removed any potential allergen from her system.  After two weeks with no improvement, she took a look up Viv’s bumkin and a biopsy.  We learned nothing from the procedure, and the doctor told us just to keep feeding Viv the super-duper formula and pumping.  We saw no improvement and thought our patience ran so thin that it would surely give way soon.  We didn’t know the half of it.

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.  

 
In just the last week and a half, she went back to the hospital for an abdominal ultrasound, a chest x-ray, an echocardiogram, and an EKG; and we saw a cardiologist, a GI specialist, and her pediatrician, twice.  While the doctors ruled out any heart trouble, a particularly nerve-wracking theory, they continue to look outside the GI track for an answer.  Next week we have a sweat test, an appointment with a neurologist, and an eating clinic with the occupational therapy department.  Before one of these appointments we must deliver a second sample of her poop.  In the meantime, Viv now takes a new medicine for her cramping, the efficacy of which has yet to be determined.  The process moves agonizingly slowly with multiple phone calls required to move the ball after each test or appointment still turns up no answers.  Our saving grace comes in the form of Viv’s grandfather’s med school roommate.  On multiple occasions Charlie has greased the wheels of the hospital machine by tracking his colleagues down in the hall, pulling up test results, and who knows what else.  Our parents also give our little family daily support in a variety of ways.   

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.

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2 thoughts on “Being patient

  1. Dearest Gail,

    I am so so very sad for all the pain and difficulty you have been through. I think of you and Ian and little Vivian all the time. You are an amazing mom and person and I know this whole process has to have been terrible. Please know you are so loved and supported. I wish there were more I could do, but for now, I will simply keep sending all my love and prayers your way.

    Big bear hug,
    Laura

  2. Shuja and I had no idea that all this was going on with you guys and little Miss Viv. I can’t imagine what you’ve been going through, especially considering the fact that I still worry up a storm and get tearful at least once a week even though Nas is healthy and fine. I hope that Viv continues to heal from surgery and that some good doctors find new, better ways to help solve the mystery of her pain. She is just lovely and looks so happy and sweet in your videos. Wish we could be there to smooch her and give the two of you hugs. Know we are thinking of you.
    Lots of love,
    *Emily (& Shuja & Nas)

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