Wednesday, September 7, 2011

Even Sick Babies Are Perfect





Not even a year old and our little Ewan is facing the pharmaceutical regimen of an octogenarian.

My Friend Jackie and I both have four children. The last two (mine and hers) were born three days apart from each other. She and I have many times sat in the unladylike manner of two women very large with child and spoken of the charmed and bless-ed nature of our lives thus far. Though neither of us inclined to pessimism, we mutually admitted a growing sense of dread that with each child we add to our family there is a greater likelihood for tragedy - or hardship - illness- death - disease - something that doesn't feel quite so easy as a healthy newborn.

And newborns are SO easy.

Her fourth was born early and spent a fair bit of time in the NICU while she went back and forth from home to hospital trying to mother all of them in her postpartum delirium. Except Jackie doesn't actually suffer from delirium, or anything like unto weakness. She's kind of like the female Chuck Norris - you know, her tears cure cancer. It's just too bad she never cries.

I wanted to help her family while she was jockeying this trial, but as luck would have it my own very pregnant body was in the throws of a painful and protracted prodromal labor. And I am no Chuck Norris so I mostly kept to my bed.

Plus it was Jackie's fault because she fed us barbecued garlic chicken which produced nearly identical results just over two years before. Wives and husbands talked and laughed and ate more garlic than is healthy for intimacy of any kind. Kids played in the sandbox - then badda bing - Jackie's got a baby by morning and my Cecily comes three days later. 26 months later we do the whole routine over again - barbecued garlic chicken, badda bing, Jackie's baby by morning and my Ewan three days later.

Ewan came healthy. Ewan came big - 8 pounds, 10 ounces. He ate fine, he smiled, he slept, he grew, then he stopped growing. For five months Ewan not only gained no weight, but lost 10 ounces. He was diagnosed Failure to Thrive, which in medical mumbo jumbo is really just code for "this child has . . . ?????"

After many tests, including a full endoscopy at Primary Children's Hospital where I saw his pretty, pink insides we got more than a question mark.

"Eosinophilic esophagitis" said the very kind and hurried pediatric gastroenterologist on the phone just a week before we left Salt Lake City for a new home on the east coast. "Pick up this prescription, give it to him once a day, and good luck out there."

I gave it to him. He woke up. Ewan had a latent personality that emerged when suddenly his pain was suppressed and he could EAT. He gained five pounds in two months - which still leaves him soundly off-the-chart-small, but it is better than wasting away to nothing.

We finished Ewan's meds two weeks ago and I was feeling a bit liberated until we saw a new pediatric gastroenterologist last week. He sent me home with a new phrase - "chronic disease", and a slew of new meds that I have been afraid to start because they are so many and so specific in their requirements that I need a detailed chart of when and how much and before or after food and gargling with water to prevent thrush after this one.
Cause every one-year-old can gargle.

I'm pretty hopeless with a medically pedestrian round of antibiotics. Administering medication of any kind with consistency is for sick people - not me. But my son is sick, all 17 pounds of him, all 12 months of him, all the cherubic yumminess of him is chronically sick. I am the only person on this earth that will make sure that his mouth is rinsed out after taking budesonide to avoid an oral yeast infection. I have to do it.

So there it is - my diminishing returns on the ability to produce procreative perfection indefinitely. It is my "tragedy" which, for reasons unknown, seems more frightening at night when every one else has gone to sleep and I am left to eat massive helpings of worry all by myself.

My Mom pointed out to me today how lucky we are it is not something worse.
"It could be so much worse" she said.
"It could be," I agreed.
She was right. There was my little boy smiling at me, trusting that, come bed time, I would rinse his mouth out after the budesonide.
And I did.



9 comments:

k_laurelle said...

suzanna was failure to thrive. I don't know that they ever found out what was wrong, but she got better, or at least so we thought (she has a whole slew of gastrointestinal issues to this day). I'm glad he's doing better.

Emily said...

Ewan IS perfect. He is the most beautiful baby. Benjamin and I pray for him nightly that he will grow and feel better. Maybe I need to add something more specific, like "do a good job gargling."

Maren said...

How does one exactly go about rinsing out a baby's mouth?

camjackieward said...

Jessica, you always leave me in tears. I wish that my tears did have healing powers like those of Chuck Norris, but I'm saddened to say they don't, for I have cried plenty of them to no avail. But I can say, thay my "earth ups" are pretty impressive.
I still think you should try the NAET stuff. Here is info for the one closest to you.

Amy Lichonczak, CNHP
Approximately 51.84 Mile(s)
Contact Information
Network Chiropractic
108 5th St. SE, Suite 207
Charlottesville, VA 22902
USA Phone: 804-814-0266
Webpage: Official NAET Practitioner Site

She is not very close, but if she could help get rid of the problem and Ewan didn't have to be on meds, what a blessing. At least find the book and read about it.

Say Good-bye To Illness
(By Devi S. Nambudripad)

We sure miss you guys!

Les said...

Jessica!

I had no idea. I can't recall if Christy and I ever gave you the many detailed accounts of my choking experiences. Some of them intensely scary, and near life threatening. My throat is about 8mm. Which is about 1/3 the size of a normal throat. I've choked my whole life. The hospital did take a biopsy of my throat and diagnosed me with...Eosinophilic esophagitis. In my frustration to find the solution to the problem I signed on to be a guinnea pig at the Univeristy Hospital to try out new drugs for treatment, but landed on the placebo. I've had several throat dilations done, which can't be continued because that just thins the lining of my throat to the point of serious danger. I'm sure you've done your research, alergens, etc. But my path led me to the waiting room of an Acupuncturist in Midway, UT. She follows a NAET regimen.

I haven't gone through the whole treatment program yet...because of various scheduling issues. But I've gone through two seperate periods of treatment and can genuinely say that for 6-8 months following my acupuncture, I don't have ANY choking episodes. Where as it is common for me to choke weekly, or multiple times in a week. I've followed western medicine about as far as I dared, and I'm glad I've expanded my horizon.

I feel so badly for Ewan. I don't know if it is Eosinophilic esophagitis, or "chronic" whatever. But if you are willing to look at maybe more non conventional options, I'd encourage it.

Les

camjackieward said...

Les,

Have you done any of the NAET stuff? Our baby had an allergy to the sun, he would break out in a severe rash all over his face whenever we took him outside. We did 8 treatments with the NAET and he is perfectly fine. We go to a doctor down in Orem. He charges per allergen instead of per treatment. My sister-in-law has used it extensively for herself and two of her children who have heat allergies, and my mom is working through rheumatoid arthritis and neuropathy with it.

Jackie

JaeReg said...

Thank you Jackie and Les,

Yes, I am open to looking outside traditional western medicine. I am going to call the number you gave me for the NAET person in Charlottesville and find out what kind of cost it would be. It's fifty miles for us to see an allergist/immunologist anyway. And she's not on our provider list so . . . it could be a better deal anyway.

We had no idea you had such problems with choking, Les, or an EoE diagnosis. I'm sorry. Perhaps we could question you a bit about it sometime. One of my biggest concerns is that Ewan is in pain all the time.

Thank you for the information, Jackie. Here's Hoping. I'm glad Brooks is doing well.

justin + camille said...

Poor Ewan! We are praying for you guys! I hope his troubles melt away. :( I wish I could do something more than just read your blog and hope for better things for you.

Christina said...

Oh Jessica! I think about your family all the time, but I'm only now finally reading your blog and writing. My sisters-in-law lost their 5th babies (one from a severe genetic defect--he lived 45 minutes) the other from a miscarriage at 18 weeks. So I tell myself "I'm safe at 4" although my nephew (2nd of 4) just finished intensive chemo for "childhood leukemia." We're not meant to be safe from tragedy and I wish for cumulative heartache to "count," so I can selfishly go along unhurt. Yeah right. I hope so much that alternative treatment gives Ewan relief from pain.