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Madeline was born very small. She had problems almost immediately after birth. She didn't latch very well right from the start, and after that initial feeding session, we couldn't really get her to latch at all. Her blood sugar dropped severely low, and she wasn't maintaining body temperature either. Four hours after birth, she was taken from us, hooked up to an IV, and placed in an incubator. Thankfully, she stabilized in time for us to take her home two days after her birth, but our troubles didn't end there. Eating has become the single biggest struggle we've had with Madeline since the hour of her birth. Otherwise, she is a bright, active, beautiful child that Matt and I love more than we can say. We only pray that she'll become healthy as well soon.

Failure To Thrive
By four days old, Maddie's weight dropped to 4lbs 13oz. That was the first day the words "Failure to Thrive" were written in Madeline's medical record. We began to see a lactation specialist that day as well, and both she and the pediatrician felt it was imperative for Maddie to begin eating. I could barely get her to latch, even after my milk came in. It was hard for me to accept, but I did agree to start feeding Madeline via bottle. The lactation specialist felt we still had every chance of success at breastfeeding, but I felt sure we were doomed. Nevertheless, I was concerned with her weight loss, and thus began my life as a slave to the breastpump. By 8 weeks, I made the extremely difficult decision to give up trying to breastfeed at all, as weekly visits to the LS had proved fruitless, and Maddie and I were both frustrated at the lack of success. I would continue to exclusively pump for her for 10 months.

Maddie took to the bottle right away, fortunately. It definitely gave the added benefit of letting us know exactly how many ounces at a time she would eat. She started off as any normal baby, and in the beginning, did finally begin to gain some weight. She had been born in the 2 percentile, and at her 2 month checkup, was up to about the 2.5 percentile, weighing in at 8lbs 1oz. At her 4 month checkup, she was up to just below the 4 percentile, weighing in at 11lbs 2oz, and I was really starting to be hopeful. I was concerned about her eating though, as she would still only drink a couple oz of milk at a time at most, and be done. She was taking in at most 24oz a day, and I knew that most babies her age were closer to 30-32oz a day. She was still gaining though, so we weren't too concerned yet.

At 4.5 months, I began to introduce cereal to her with absolutely no success. For the next six weeks, I would try it for a couple days, and then give her a good week break and start over. She absolutely would not take it, and would start crying every time and occasionally choke and vomit. It was very traumatic. Plus, she was still drinking very little at a time, and I was anxious to get to her 6 month appointment to talk about how to get her to eat more. When she was finally weighed again at 6 months, her growth had slowed considerably. She was back down to the 2 percentile, weighing 12lbs 10oz. She'd gained only 1.5lbs in 2 months, and I was concerned. The pediatrician wasn't too concerned, as she'd always been small, but gave me some tips on feeding, and tested her again for anemia (and again the results were fine).

I gave up trying to feed her cereal, and moved on to vegetables. The first time I even got the smallest taste of carrots in her mouth, she vomited. I tried vegetables for only two weeks before switching to fruits, hoping that the sweeter taste would at last tempt her to eat. We had absolutely no luck. We tried every fruit, and she refused them all. Her mouth closed shut tighter than a steel trap, she would scream and cry, and still occasionally gag and vomit if I did manage to get any in her mouth.

By 7.5 months, I was absolutely fed up. Plus, I still wouldn't take much milk at a time. I called the doctor and spoke to a nurse, saying I was absolutely frustrated trying to get her to eat, and did she have any new tips I could try. She suggested bringing Maddie in to be seen again, and at that appointment, the pediatrician finally showed some concern. She sent us to a nutritionist, a geneticist, and a speech therapist, and told us to come back when we'd seen them all.

The geneticist appointment was the least interesting. She was very nice and asked us a million questions, and finally came to the conclusion that Maddie's weight issues were probably not genetic. She didn't think running any tests was necessary at that time, and told us to explore other venues, and she'd run tests if we didn't have any success. She commented that Madeline appeared in every way to be a normal, healthy child. She said most Failure to Thrive babies she sees are lethargic, unresponsive, and developmentally behind. By contrast, Maddie was bright and active, and if not for her weight, you wouldn't know anything was wrong with her. We felt encouraged by this.

The speech therapist began by evaluating Madeline's behavior while playing with toys. It was apparently immediately obvious that Maddie would never ever stick anything in her mouth past the tip of her tongue. Any further, and Maddie would gag. The therpaist said she'd obviously not lost her gag reflex as most babies do, and the first thing we needed to do was get past her severe "oral aversion". We began weekly therapy sessions, and a daily routine of getting her to stick toys in her mouth, gag, and then control the reflelx. It was surprising (and relieving) at how fast her initial progress was. After a few weeks, we could finally get her to eat bits of solid food. We skipped baby food altogether, and moved on to chunky stuff that she could "feel better" in her mouth. Bread, cheese, cereal puffs, etc. She would take bites of things about half the size of my pinkie fingernail, but after maybe two pieces, she was done. It wasn't much, but it was a start at least.

The nutritionist ultimately felt as out of her league as the pediatrician.  She asked us to videotape Madeline eating a bottle. She found the video very interesting, and was the first person to mention the word "reflux". She said only eating a couple ounces of milk at a time is a classic sign of a reflux baby. When it came down to it, Maddie showed several signs of reflux, including hiccuping often. Just not the extreme crying. The nutritionist had us start adding formula to her breastmilk, to up the calorie content, and said there wasn't any more she could do for us. She said we needed to see a GI specialist, and said as much to the pediatritian, who agreed. We added another doctor to our roster.

The first GI specialist we saw was the worst experience with a doctor I've ever had. She flat out told us she didn't believe such a thing as "silent reflux" existed, and told us to go home and make her eat more. Despite my mother, Matt, and myself making multiple protestations that we've tried and tried, and she simply won't, the doctor finally gave us the brilliant answer that we just obviously need to "try harder". It was that, or feeding tubes. End of story. We left the room vowing not to go back, and the pediatrician agreed to give us a new referral for someone else.

By this time, Maddie had flatlined in her growth. She hit 14lbs at 9 months in December, and stayed there no matter what we did. The pediatrician, acting on the nutritionist's word that reflux was a strong suspect, prescribed Zantac for Madeline. We began it in February, just a couple weeks before seeing the new GI specialist. It seemed to have some immediate, though limited, success. For the first time, Maddie started drinking more than one or two ounces at once.

The new GI specialist we saw in February felt that silent reflux was the obvious answer. The fact that she'd responded to the Zantac even slightly only offered more proof. However, she didn't think the Zantac was strong enough. She started us on a compounded form of Prevacid. The response was immediate, and for the first time in months, Maddie began to gain weight again, albeit slowly. At her one year checkup, she weighed in at 14lbs 9oz, and finally hit 15lbs soon after. But the GI specialist felt it wasn't enough, and wanted us to see her specialized pediatric nutritionist. And so we added doctor #7 to our roster.

We saw the new nutritionist in May, and she felt the same as the geneticist did. Maddie, in all other respects, was a normal, active, bright, inquisitive, and responsive child, who didn't seem at all developmentally behind. She felt we might have good success if we concentrated Madeline's formula, so she could get her daily calories in the amount of milk she would drink. Wonder of wonders, Maddie began to quickly and significantly gain weight, to everyone's relief. She gained over a lb that first month alone. She continued to gain, though not quite so fast, and so we are keeping up her daily routine of meds, concentrated formula, and prayers.

Maddie finally hit 20lbs at 19 months old. She had an endoscopy in September '08, and biopsy results confirmed the presence of esophogitis, the first concrete and irrevocable proof that Maddie has, indeed, been suffering from reflux. Our poor little angel just never complains. It makes me sick to think of how long she went undiagnosed. Eleven months of her learning that eating hurts, and we pay the price every day. Maddie still will not eat enough solids to qualify as "eating". With her reflux under control of meds, it's purely behavioral now. She is progressing, but heartbreakingly slow. She is finally eating bites big enough to be called bites, but still only five or six before quitting. Not enough to fill her nutritional needs. Getting her to take bottles is still a struggle. She will drink at most 4-5 oz at a time. We're lucky to do 25oz a day. She is showing interest in everything we eat, and asks to try bites all the time. She still refuses to let us put any food in her mouth. She must do it herself or not at all. She rarely vomits anymore, and we have great hopes she will continue to improve with time.

In the meantime, we adore our beautiful, precious little girl more than we can say. She is a blessing in our home and still a miracle I give thanks for every day.