Hi, my name’s Melissa. My husband Alex and I are blessed. In 2012 we were happily raising our three beautiful children. We ate pretty healthy and other than my youngest daughter, Miah needing ear tubes and being a little overly moody, which we just attributed to her introverted personality, we were all healthy. Little did we know how much one year would change our lives. For me at least, it all started when I found out a big unplanned surprise. I was expecting our fourth child.
Miah 2 years old, September 2012
Just as the morning sickness of the early weeks of pregnancy with our very unexpected fourth child were wearing off a new sickness was settling in. Since sometime around Christmas and New Year (2012) my youngest daughter, 2-year-old Miah had become sick. At first I thought it was just a seasonal bug brought home from school by one of the older kids. As the severe diarrhea and occasional vomiting continued going on three weeks without any signs of stopping and her former energetic self and happy smile faded to a scowl and listlessness, I knew something else was wrong.
We went to the insta-care one night. Miah has a very special caterpillar stuffed animal appropriately named, Caterpillar, whose fuzzy little legs Miah would rub with her fingers to keep her from being scared. Caterpillar came with us to this visit and everywhere else from then on. At the insta-care they couldn’t even get an IV in to administer fluids because they were ill prepared for such small veins that were flat from dehydration. So after $75, a stool sample taken, and a handful of popsicles they sent us home saying it was most likely a virus and to wait it out.
She didn’t improve, but steadily grew worse. A few days before valentines I was trying to hold back tears as we drove to the hospital. Depressed and frustrated, we sat in the emergency room of Primary Children’s hospital while they took more stool samples and told us it was probably just a virus and in a week tops she’d be back to normal.
A week later we were back for more IV fluids. She had lost more weight and her belly was so swollen the skin was tight. Her eyes were sunken, her skin was dry and pale and she could barely walk across a room without being exhausted from the effort. Again, holding in my emotions I told them to draw blood and perform every test they could think of. I sternly informed the kind ER doctors that it was NOT a virus!
I had employed every homeopathic treatment I could find to kill any virus and encourage her body to recover on its own. I had spoken to doctors and been scolded for feeding her a hotdog when she obviously needed toast and soup. But it had been nearly two months and my baby girl was slowly starving death. If she asked for a hotdog, she would get a hotdog! If there had been a virus it had only stuck around long enough to serve as the catalyst to a bigger underlying problem. The truth was no one knew what was wrong or what to do to get her better. Every stool and blood test done had come back negative and inconclusive.
After the third visit to the ER for fluids they sent us home with a number for a gastroenterologist, Dr. Harnsburger. I scheduled the appointment for a week later which itself was a miracle since the GI office at primary children’s is usually booked for months in advance. We took our pale, limp baby girl in. My two year old had lost 8 lbs. and at first glance Dr. Harnsburger just said, Celiac disease. People with celiac disease who eat foods containing gluten experience an immune reaction in their small intestines, causing damage to the inner surface of the small intestine and an inability to absorb certain nutrients.
Our first visit with Dr. Harnsburger
I had researched every on of Miah’s symptoms online and had read about the disease so I was relieved that it would only take a gluten free diet to get my daughter back. They did some more blood work and suggested an endoscopy to see if it was in fact Celiac. An endoscopy (biopsy of the upper GI) is really the only way to know for sure if someone has this condition, since the intestinal walls will be damaged from consuming gluten. I couldn’t bring myself to consent to putting her under anesthesia when she was so weak. So we agreed that a little time on a gluten free diet to get her stronger before doing the procedure.
It took a week or so of “What? There’s gluten in that?” and “opps” to realize what I could and could not feed her. But she was still not improving. This was made even more difficult by having two other children who, in an attempt to be helpful would point out everything Miah couldn’t eat and what they could.
That was when we decided as a family that the only way to support Miah and get her well again was for everyone to be gluten free. So we de-glutened the whole house, replaced the toaster and wooden utensils to avoid cross contamination and tried to stay positive. All the while, all I could think was that my daughter was slowly dying right before my eyes and all my best efforts were doing little if anything.
To make matters worse, when family members who hadn’t seen her in some time saw how gaunt and lifeless she was, they all wanted to help feed her every gluten free food possible to get her healthy again. Unfortunately, it had the opposite effect and she refused to eat anything.
Back to the ER we went. Miah, with her caterpillar, whose fuzzy little legs were nearly rubbed off by now, was tougher than anyone I’d ever seen. This time they didn’t send us home. We spent five days at Primary’s with her while doing everything from IV fluids, stool samples, blood work, an endoscopy and a partial colonoscopy. They concluded what we already knew. She was one sick girl.
She was experiencing a Celiac Crisis.
Our first hospital stay. March 2013
Celiac crisis is a rare, poorly understood, but potentially deadly condition in which patients with celiac disease suffer from severe diarrhea and other serious metabolic changes.
Celiac crisis is specifically defined as acute onset or rapid progression of gastrointestinal symptoms, together with signs or symptoms of dehydration or malnutrition that may be attributed to celiac disease, and which require hospitalization and/or supplemental nutrition.
The severity of Miah’s condition was the worst they’d seen in a child her age for more than 20 years. Her intestines were swollen and completely void of the vili or carpet-like fibers that absorb nutrients, which was the cause of the diarrhea and vomiting, weight loss, and edema of her lower legs and feet which I had noticed the week before. Her body was lacking in vital proteins along with a dozen necessary vitamins and minerals.
The nurses and doctors were amazing and helpful, but again after five days they sent us home. This time it was with a better plan for what and how to feed her and encourage recovery. Again, a week went by that was no different than the last two and a half months. Most of my time was spent preparing food that she would nibble and then throw up or flush down the toilet. She would sleep and cry, and I’d carry her around like an infant. All the while I was trying to care for my other two children and myself and the baby I carried.
Each night Alex and I would lie awake in bed trying to encourage and comfort each other, my tears wetting the pillow. Every day I’d struggle to muster up enough faith and energy to care for my family. I was just waiting for Miah to show some sign of her old self. I hadn’t seen her smile in weeks. Then I got a call reminding me of an appointment with Dr. Harnsburger a month before the appointment I had scheduled. I called and the office confirmed it. This would be one of countless miracles, because when the doctor saw that she had lost another pound and a half in the last week she admitted us again. This time the stay would be much longer.
Feeding tubes (four, because she kept pulling them out), blood draws, doctors, a central PICC line placed, tacicardia (fast heart rate) due to her becoming anemic, EKGs at 4 a.m., catheter placed for a clean urine sample, more doctors, blood transfusion of a few ounces, lots of little red wagon rides around the hospital halls and weeks later we sat together as a family on Easter morning listening for the first time, in what seemed like an eternity to Miah giggle and play with her brother and sister.
We had come terrifyingly close to loosing our daughter, but thanks to amazing miracles, doctors, nurses, prayers and Miah’s own strength (and her caterpillar J) her body was healing! She had lost a third of her body weight and still had a long way to go, but she was smiling again.
Easter egg hunt at the hospital
We were still at the hospital, but after nearly a month at Primary Children’s, Miah was recovering! Alex and I had spent that time spreading our selves thin trying to be home with our older two and at the hospital with Miah. I would get the kids off to school in the morning and then go the hospital to relieve Alex who had been there all night. He’d go to work, then head home to eat dinner with the kids who were being taken care of by family, then come back to the hospital, I’d go home and put the kids to bed, then we’d do it all over again.
Lots and lots of wagon rides
I remember the first time Miah walked down the hall of the hospital. It was only about 20 feet, but doctors and staff who hadn’t even worked with her, but who knew her from our countless laps in the wagon through the halls smiled and cheered her on. She was discharged in April, a week before her third birthday, still with the PICC line in place for intravenous supplements. We hauled her heavy bag filled with lipids and fluid that were still supplying most of her nutrients through the PICC line for another few weeks at home, but once her intestines recovered enough to start absorbing nutrients on their own, the line was removed and she just bounced back!
On our way home! April 2013
It’s incredible to see how quickly she returned to her silly, smiley self. We had to re-potty train and she had to get used to being on a regular eating schedule again, but she was singing, twirling, and playing with her siblings. It’s also incredible to see how quickly her mood and demeanor can change if she does accidently get gluten. She becomes anti-social, tired and overall very grumpy.
A year later and the only evidence of the traumatic events of last spring is her beautiful red hair. From the malnutrition and medication her hair started falling out and became very brittle. So it’s shorter and a little less shiny, but her hair will be back to health soon enough too.
My husband Alex and I are blessed. We are happily raising four beautiful children. We eat gluten free, whole, healthy foods and treasure every moment we have together as a family.
Our Story: One Year Later
I’ve been thinking about how to write this post for weeks now. I still don’t know how to write it. So much happened a year ago that has changed me forever. So much has happened since. It feels strange running into old friends from before. I feel like I should be reintroducing myself, like “Hi, I’m New Melissa. I’m pretty close to Old Melissa — just…different. Better I hope. Stronger, I think. A little more refined…definitely.”
It’s been one year almost to the day that we walked out of Primary Children’s Hospital and took our little Miah home – less than a week before her 3rd birthday 2013. We had just spent nearly a month in the hospital after months of a dizzying downward spiral in her health, struggling to keep our daughter with us who was experiencing a severe celiac crisis. At her lowest she weighed 18 pounds. As we walked out of the hospital that beautiful April day she didn’t weigh much more than that. A year ago at her best she was listless and weak. At her worst she was emotionally closed off, tantrum-prone, and slowly dying from starvation.
Now she is a vivacious, determined, hilarious, loving, smart, almost 4 year old! She has nearly doubled her weight from a year ago. She loves playing with her brothers and sister, sings and dances everywhere she goes, and is healthy! She’s still reserved and thoughtful and often reminds us of the time she spent in the hospital.
“Daddy had a sleepover with me when I was at the hospital.”
“I got this blanket from the hospital. It’s special.”
Her hair that started falling out from malnutrition and medication a couple months after we returned home has been slowly growing back in and is the copper curls it was when she was a baby.
It’s been a little crazy getting used to four kids, difficult with a couple job changes, a move, and..oh yeah, eating completely gluten free. I have spent the last year cooking nothing, but gluten free, healthy food and it hasn’t just benefited Miah. It’s benefited our entire family and those around us who want to eat better or who need to be gluten free. I’ve been blessed to share our experiences, what I’ve learned, and lots of yummy recipes off and online. Thanks everyone for being part of it!
We are blessed!