Off the rack

With only one exception, my wedding dress, I shop off the rack.  Budgetary constraints certainly serve as a motivating force, but mostly I find that what works for most people suits me just fine.  Apparently the medical academy follows a similar rule:  the most likely diagnosis is the most common one.  In recent months, a conflicting canon – that one ailment usually explains all symptoms – created great consternation.  Viv’s doctors searched for a unifying explanation for her troubles, but much to our delight, five gastroenterologists, four radiologists, a cardiologist and his two technicians, two neurologists, one opthamologist, and a partridge in a pear tree couldn’t find anything amiss.  Most recently, blood testing eliminated a host of metabolic conditions as well.  After another hospital admission and set of biopsies, we finally got a positive test result – drumroll please – allergy.  Viv’s primary GI doctor (the aptly named Dr. Burpee – when Viv burps I’ve taken to putting on my best pitchman’s face and saying, “Burpy:  it’s not just a doctor”) and her fabulously attentive new pediatrician (the contradictorily named Dr. Con(n) – self-entertaining mommyism:  “Docta Conn Docta Conn” to the beat of “I Feel For You”) now operate under the assumption that all of Viv’s troubles stemmed from the combination of her hernia, infant reflux, and an allergy to my breastmilk.  It looks like our little medical mystery just suffered from a grab bag of fairly mundane ailments.

As a result of the positive allergy biopsy, Viv is permanently off the rack.  I lament that she and I didn’t have the breast luck with feeding.  For the first few months, I felt totally let down by my boobs after repeatedly hearing that their laziness caused Viv’s failure to thrive.  When every sip gave her searing pain, our breastfeeding experience sucked.  Rather than nursing this wound, I’m focusing on the much larger upside:  the hernia surgery and hypoallergenic formula gave us a pain-free, nutrient-absorbing baby girl!  So long as we administer her medications on time, Viv stays happier than a lark (when Dr. Burpee asked me, “Just how happy is a lark?” I did some research; apparently, singing causes dopamine release in birds).  Viv’s joyful temperament finally shines through in the form of endless coos, giggles, and shrieks.  Moreover, at her six month check-up Viv weighed in at fifteen pounds, four ounces, putting her at the eleventh percentile of weight for length (and apparently making her big enough to throw my back out).  We now rejoice over normal parenting struggles like stubborn refusal to nap and frequent waking at night (okay, “rejoice” might be a bit of a stretch).

Unfortunately, a new issue looms large, dampening our lifted spirits.  Though we ultimately succeeded in eliminating the pain caused by Viv’s primary conditions, we created a new one in the interim:  tube dependency.  We placed Viv’s nasogastric tube on November 20, after V had become so skinny (first percentile of weight for length) that terms like “impaired brain development” got bandied about.  Her oral intake immediately and consistently declined.  Two months later, she refused to allow a bottle anywhere near her mouth.  On New Year’s Eve, Viv worked a minor miracle by starting to drink small amounts from the bottle at every feeding.  We thought the secondary malady would soon be remedied.  Much to our disappointment, we learned that weaning could require six months of intensive therapy.  Once I dealt with the disbelief and self-pity, I began to circle the wagons, calling all our doctors and scheduling the recommended appointments.

Three weeks later I’m still watching in horror as the wagons roam aimlessly about the plain.  The GI clinic sent us to a therapy session at the hospital before the holidays.  That therapist referred us to a pediatric therapy non-profit, because the hospital “doesn’t do” long-term therapy.  We dragged Viv to a pre-intake appointment during which the program director told us that paperwork would be required before we could receive any guidance, that “rapid weaning” isn’t possible for a baby as young as Viv, and that we ought to schedule placement of a g-tube (a more serious, surgically-installed tube that feeds directly into the stomach); a week later, filled out the documents at our “rush” intake appointment; and, yesterday, finally got a visit from the actual therapist only to learn that Viv doesn’t need to be taught eating skills (which we could have told, and did tell, everyone), she requires a medically monitored rapid weaning plan which, of course, the non-profit doesn’t do.  Without such a program, V might start drinking more spontaneously, or she might remain on this tube-necessitating plateau for many months.  The therapist essentially sent us back to the doctors (actually, she suggested the nutritionist who no one told me Viv should be seeing), but only after I called and specifically asked if she possesses tube-weaning experience or a game plan of any sort.  Ready for the kicker?  It seems that the one and only organized infant weaning program (which promises a tube-free baby after only three weeks) is in Austria and costs tens of thousands of dollars.  Let the circling continue.

To make a long story terse and pseudo irreverent, Viv is off the boob, she’s stuck on the tube, and – like a cheap dress that ends up needing expensive alterations – her care is as frustrating as a rubiks cube . . . yet she’s smiling and growing, and that makes the rest melt away.

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4 thoughts on “Off the rack

  1. Gail, I am DYING to meet you. I am also very intrigued after reading this!!! An allergy to your breastmilk? Please explain! We never really got to the exact bottom of what is was in my milk that bothered Stella. The theory was cow’s milk protein, but dude, I gave that UP! Didn’t help!

  2. greetings! i arrived at your blog thanks to amber. most well put: the wagons rolling aimlessly around the plain. we’re currently weaning our little guy off his G tube (which he needed desperately due to an unfortunate mistake of development that caused him to aspirate rather than swallow. silly real estate there in ye olde trachea/esophagus sector).

    anyhow, our boy had gotten up to 50% oral intake no thanks to the “wagons” but due to my decision that tube feeds would comprise no more than 50% of what he needed. (our journey from a 22-hour/day feeding pump to all-oral intake is a long story involving excel.) when we finally stopped all tube feeds three weeks ago, lo and behold he upped his oral intake to match what was missing. the medical community could never have taken such a step, instead telling me that “no worries! he’ll do it himself at some point” (how exactly? by refusing tube feeds? by eating 50% more than he needed?)

    anyhow, this long ramble is just a way to say GOOD LUCK and imho chances are excellent your girl can be tube free, as long as you don’t count on the medicos. they are hemmed in by a lack of coordination among themselves, time, CYA thinking, and algorithm-based practices. and i *heart* dr burpee. he’s young and he’s learning, but he’s a good guy.

    cheers!

    – olga

  3. Gail, I’m really excited to hear where you and Viv are at now! I heard through the grapevine that Viv is off the tube now. You are really in our thoughts — my son will do a home-based wean here in Seattle soon. All the best to you and thank you for sharing your story!!

    • Thanks, Jenny, but unfortunately, Viv is still ng-ing (“ng-ing? ng-ing. nobody else is seeing.” – freaks of the industry).

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