Bergman's Bruisers

My brother, Justin, told me a long time ago I should blog about Harrison's story. As the saying goes "if it could help just one person not go through the same thing...."

This is taken from Harrison's baby book. I letter I have written to him. It's lengthy and personal, but there's little I don't share.

I remember taking you to your 4 month well child check-up. Dr. Gomez was looking you over and commented on how healthy you looked. He told me if I wanted to start offering you food I could. As he was walking towards the door he stopped and said, "I have a feeling he's going to be a great eater!" I was so proud of myself driving home from that appointment, such a feeling of accomplishment. I had a beautiful, healthy baby in the 90% for height and weight and I felt it was my success.

I immediately went to the store and bought rice cereal. You took it like typical babies your age--more out than in. I knew to expect this so I wasn't surprised. I kept offering because I was told by moms much more experienced than me that you would start to like to eat. I read books and searched the internet learning how to make baby food. I went to the grocery store and took ideas from Gerber on tasty food combinations. I even ordered special containers to store your homemade food in the freezer. Your dad watched me with the food processor making food that I couldn't wait for you to try and grow to love.

But you never grew to love the food. In fact, most of the food in the freezer that I was so excited to feed you ended up in the trash because it expired. By the time your nine month check-up came I was frustrated. I struggled with nursing and feeding you was torture. Dr. Gomez came in the room talking fast, giving me a speech I know he had given ten times that day already. "So mom, everything's great? Feeding well? 3 times daily? Washing it down with milk after?" He was talking so fast, not allowing me to answer, I finally cut him off and said, "no, everything's not great! I can barely get him to nurse for 4 minutes and my husband and I fight over who has to feed him it's so miserable." I told him I wanted some lab tests done. You had now dropped to just under the 50% in height and weight. He tried to brush me off and when I persisted he stopped and said "you should enjoy your baby and being a mom. You want tests? Fine. Let's order a CBC, electrolytes, upper GI and an ECI referral." I felt shamed. He made me feel like I was making you sick. I told him I wanted to start with the least invasive and only had the lab work done. The lab work came back normal. I was told I just had a picky eater.

Yet by the time your one year check-up came, you were only in the 10% for height and weight.

By 15 months you only had gained ounces and by 18 months you lost weight. Finally Dr. Gomez agreed something wasn't right. Again, he ordered more tests. This time your sodium bicarb came back abnormal so this sent us to the renal clinic at Children's Medical Center of Dallas. It was there that I met with the first nutritionist. She had me keep a dietary log of everything you ate. She was amazed at what I was adding to what little food you ate. Green beans saturated in olive oil, pancakes with butter, peanut butter, and syrup, whole milk with carnation instant breakfast and corn syrup. At one point I even fed you half/half! She said "he doesn't eat much, but what you're feeding him is so calorie dense he should be gaining weight." Your kidneys were fine. But still with no weight gain we were referred to the gastro clinic.

It was in the gastro clinic that you had a battery of tests done. Celiac disease, cystic fibrosis, testing your stool for fatty malabsorption, endless bloodwork. Nothing happened fast. The test took a long time to get results. No one seemed to be overly concerned about how little you were becoming. No one except me. I knew something was wrong. I knew from the time you were six months old something wasn't right. It's unfortunate for you that it took you getting sick for me to hone in on my instincts and learn to trust myself. Everyone from my coworkers, aunts, mothers and grandmother told me I was just a 'first-time mom' and everything was "fine" They would say "he'll eat when he's hungry. You're such a worrier. He senses your frustration. Make meal-time fun!" "If you didn't feed him so much milk he would eat." Even your Great-Uncle Mark called G-Jo to share his opinion of what I was doing wrong. At an appointment in September Dr. Mittal and Shabina, the nurse practitioner, labeled you 'failure to thrive'-a knife to my heart! Failure to thrive?! I immediately pictured an Ethiopian child on TV asking for food and money. Not my baby. My baby whom I desperately wanted to have. My baby that I have given so much to thrive and now has failed. I cried. Shabina comforted me saying we would find out what was wrong. Next on the list of tests was an upper endoscopy. She said we would get it scheduled quickly.

It like felt as soon as we left the office, you left their mind. "Quickly" to Shabina meant over a month later. Again, I cried. I begged for an earlier date but was unsuccessful. I pleaded for at least an appetite stimulant in the meantime to help with the day in and day out of helping you eat. You started on Periactin and it worked. You finally ate (albeit still by most toddler standards lite) but you actually ate! This eased the wait until your final test.

You had your upper GI in October. I was three months pregnant with Gavin. We arrived early to the hospital for your pre-op, your Dad and I laughed endlessly at your reaction to Versed. You slurred what little speech you had and wouldn't lay down. Dr. Mittal came out from surgery with pictures of your intestines. He said your gut looked very healthy, but was sending a biopsy for final results. You had a difficult time coming out of anesthesia, inconsolably crying. The nurse pulled out your IV, quickly dismissing us, still wearing your surgery scrubs! Assuring you would calm down soon. You stopped crying at some point on the car ride home. And life resumed as normal.

Weeks passed without results. To be honest, I had almost forgotten. On the day we found out your Dad and I were in a fight and not talking. The nurse, Kimberly, called and told me your biopsy results showed you had giardia. I said, "okay, what antibiotic do we treat that with?" She said, "no, giardia is a parasite." I called your Dad and our fight was instantly over. Perspective is an amazing thing. I was stunned when I googled giardia and saw a picture of what had been feeding on you for over a year. This disgusting parasite stealing your growth, making you feel awful. I instantly thought about the places all over the house I changed your diaper. I felt giardia was everywhere and on everything. I just wanted it gone. Dr. Mittal wanted to try a new drug that was only a 3 day treatment. Three days to kill a parasite that had been growing for over a year? I should have known better. You felt good for about a week. Until the parasite grew its strength back and attacked you stronger and harder. It was Halloween weekend and we had friends from out of town coming to 'Boo at the Zoo.' You were miserable. That weekend you ate nothing and only barely drank. I emailed Dr. Mittal telling him the medicine didn't work and we needed something else. He insisted he needed stool samples to confirm the diagnosis before he would treat. I know had you been his own child, watching you struggle to eat and clearly in pain, he wouldn't have waited for confirmation. Days later the culture confirmed what I already knew. You then started on 14 days of Flagyl. A ten dollar prescription started a new chapter in your life.

By the time you were diagnosed, you were in the 5% for height and weight. It took a while for you to heal. It was amazing over the following months to watch you grown physically and mentally. Giardia robbed a year of your life. Seeing you come out of the haze was thrilling. At your 2nd birthday you spoke 15 words, 5 months later you spoke sentences. Your started to feel hunger! I remember the first time you went to the refrigerator and asked for food we jumped for joy. Anything you wanted to eat you got! You loved chocolate covered raisins. I finally was able to do what Dr. Gomez said, "Enjoy being your mom."

I love being your mom. I love being in your life. I'm so thankful for the lessons I have learned. I love you. Mom.