Magdalena Mae “Maggie” was born on 11 Aug 2003 at exactly 37 weeks. I was induced early after a long hard pregnancy with Hyperemesis Gravidarium and Maggie pressing on my kidneys. Despite being on bed rest the pressure on my kidneys was causing me to loose kidney function and form kidney stones. She seemed to be a normal healthy baby: perfectly round head, gorgeous brown eyes, ten fingers, ten toes and quite the set of lungs.

At first she didn't want to eat at all but I didn't think anything of it because my son was the same way. The day we came home from the hospital I went to check on her in her cradle. Her face around her lips, nose and eyes was blue. I grabbed her and she started coughing and spit up milk everywhere. I immediately called the pediatricians and I was blown off for the first of many times.

Throughout the next few weeks we knew something wasn't right with her. She spit up all the time and always wanted to eat. I thought maybe she was getting too much milk from me so I tried pumping and giving her a bottle. She would suck and then let all the milk fall out of her mouth without ever swallowing. So we thought it was the bottle nipple and went through literally every type of bottle out there. Then she started doing it while nursing too. She screamed non-stop, wouldn’t eat, wouldn’t sleep. I was losing my mind. All this time the pediatricians are blowing me off. I later learned that they thought I was overreacting and had post partum depression.

When she stopped gaining weight and started losing they paid some attention to me. At 6 weeks her pediatricians decided that she was severely allergic to something in my milk and to give her soy formula for a few days. That weekend she seemed to improve so I let my milk dry up. This was also the same weekend she became constipated. The pads contributed it to the new soy formula. Tuesday morning she started puking again. Arching her back and screaming like I’ve never heard a child scream before. The pediatrician said to put her on Nutramigen formula and add some prune juice for the constipation. No improvement. So we tried AR formula; nothing. Added straight cereal and nothing. Maggie started projectile vomiting. She would vomit a good 4 feet across the room. The entire content of her stomach was on the wall in one shot.

Finally at 8 weeks we saw a different pediatrician who was out on maternity leave. I actually heard her take the chart from a different doctor in the practice and said she wanted to see me. Our children were born on the same day. She immediately ordered an ultrasound. The earliest we could get the U/S was the next morning at 7 am.

That night was one of the scariest nights of my life. Maggie had given up. She just laid there propped up on her boppy pillow. She didn't cry, she didn't move, she just stared off into empty space. My husband and I did not sleep that entire night, we just watched her to make sure our precious little girl didn't stop breathing on us. The next morning the ultrasound confirmed our fears, Mag had Pyloric Stenosis, the valve/muscle connecting her stomach to her small intestine had closed and hardened. She was immediately rushed an hour away to Rainbow Babies Children's Hospital in Cleveland, Ohio. She was so dehydrated that they could not do surgery until the next afternoon. She had lost a pound in less than 24 hrs.

Post op we were told that this was a perfect fix and she would be problem free from here on out. The first days after surgery Maggie ate NON-STOP, we could not satisfy her. We later learned it was because she had dumping syndrome, her stomach was emptying directly into her small intestine and would do this until the pylorus had time to heal. After she started eating more normally she started vomiting again. This was the second time she was diagnosed with reflux, this time they got it right. She was put on Zantac. Her ped GI that did her surgery wanted to do a Fundoplication at one year. I blew him off and we never went back.

At 6 months we started baby food much to Mag’s dismay. We still persisted though. A couple weeks later I put Maggie into her high chair gave her a few bites and she started screaming hysterically. She pulled her knees up to her chest and became stiff. I rushed her to the ER. They believe she had an Intussusception, where the intestine telescopes inside of itself, luckily it corrected itself.

We assumed Maggie would outgrow reflux by six months. Then a year. Then 18 months. It never went away. We were in denial. I tried to convince myself that she just didn’t have a hearty appetite. She’s petite. She never finished a 6 ounce bottle, could never finish a single stage 2 jar of baby food.

At 18 months things went downhill pretty fast. Maggie stopped eating altogether, she rarely slept, started vomiting more and loosing weight. We sucked it up and made an appointment with a new GI in a new state. He made us realize that Maggie isn’t just petite. She was malnourished and labeled failure to thrive. We started 15 mg Prevacid/day and started testing.

Her upper GI showed severe reflux with no physical abnormalities. After a few weeks on Prevacid she started eating! It was amazing to see her eat. Her sleep was still horrible and she was still vomiting at night. So we she was upped to 30mg/day.

She was then scoped. She had Esophagitis and Chronic Duodentis, her small intestine was damaged, inflamed, enlarged and eroded. She was upped to 45mg of Prevacid/day. Things were going great. She gained weight. I really thought this was the perfect solution and the cure.

She still was fighting us on eating. Chewing and spitting, hiding food, throwing it away… meals were dreaded in our home. We couldn’t go out to dinner, it was too embarrassing. It was a constant uphill battle. At times Maggie would beg for food and then wouldn’t eat it. I realized things were getting worse when Maggie was so excited to get a happy meal. She sat at the table with her brother and friends watching them eat. When they were done, she scrambled out of her seat with them to go play. She didn’t touch a thing.

Sure enough she slowly stopped eating once again. She lost weight. She didn’t weigh enough in the first place so we scoped again and did a pH probe. Despite 45mg of Prevacid a day there was still acid damage but not bad enough to be overly concerned. The pH probe showed she was refluxing hundreds of times a day; her longest episode was over 40 minutes long of pure acid. She slept right through it.

Our ped GI said he can’t do anything more for her, he feels she needs a fundoplication and G-tube. He referred us to a pediatric surgeon. We also decided to give feeding therapy a try. After only a few sessions the therapist said there wasn’t anything she could do for Maggie. In her opinion she needed to be tube fed and eat for pleasure only. The surgeon agreed. He threatened us with CPS and a court order. Fortunate for us her labs came back that she was only slightly malnourished so CPS wasn’t involved.

Now at 3.5 years we are still on the reflux roller coaster. She’s slowing gaining and her eating is improving for the moment but the reflux is still there and raging. She still doesn’t sleep through the night regularly. Gulping, arching her back or stiffening her body as she stares at the ceiling in an attempt not to vomit occurs hundreds of times a day. Often we see her leaning over the arm of a chair etc. or lying on a cold floor attempting to relieve her pain. What we, including Maggie, perceive as normal everyday life has been noted by her doctors as one of the more extreme cases they have ever seen. Maggie comments in a nonchalant manner on how she’s ‘fluxin, she just threw up in her mouth or her lunch is coming back up. We don’t leave home with a bottle of Tums. She recently had another episode of turning blue because of a Sit N Spin. She is devastated that we had to throw it away but we just can’t take the risk of her aspirating again.

Maggie doesn’t know a normal life. She’s never lived a life without pain. She doesn’t know that eating isn’t supposed to be miserable. She has such a high pain tolerate that she doesn’t cry when she scraps her knee, has an ear infection or even when she dislocates her elbow.

As long as she’s not falling off the charts again we have full support of her doctors to hold off on surgery. We know surgery is more than likely in her future but we will not stop the fight until it’s absolutely necessary. She’s a happy energetic toddler and that’s what really matters.