My second child, Jared, was a preemie born at thirty weeks gestation and spent eight weeks in the NICU. Before even coming home we noticed how often he would spit up his formula, but the nurses kept reassuring us this was very common and normal. Our older son had reflux when he was a baby, often spitting up an entire feeding right after he had taken a bottle. It never affected his desire or ability to eat, and it was really just a nuisance that he finally outgrew at fifteen months. When we saw Jared spitting up, we kept saying, "Oh no, we hope he doesn't develop reflux to the extent Jake had it." If only we had known how severe reflux could get, we would have been praying that his reflux was exactly like Jake's had been.

Toward the end of his stay in the NICU, everyone noticed that Jared was arching backward a lot, especially with feedings. Because this is often a sign of reflux, he had a scan done, which confirmed he was refluxing. We were told that, like our older son, this was something he would outgrow around the time he was a year old. He was placed on two medications for the reflux and shortly after was discharged home.

At home Jared was doing very well initially, although we had to be sure to elevate the head of his bassinette and keep him upright for at least a half hour after feedings because of the reflux. Then, one Sunday afternoon, just two weeks after he came home from the NICU, my husband was holding him while I got a bottle ready for his next feeding. Although his last feeding was over three hours earlier, he suddenly and unexpectedly vomited. The vomit came out his mouth and nose and he was unable to breathe. As my husband continued to hold him it suddenly became obvious Jared was unable to clear his airway and was choking. I grabbed a bulb syringe and tried sucking out his nose and mouth but was unable to clear him. He was quickly turning blue and I called 911 while my husband attempted CPR. In the few minutes it took for the ambulance to get to our house I changed from calm and focused to nearly hysterical as I looked at my blue, lifeless baby, unable to believe that after all we had gone through with him already, that we were going to lose him like this. Just as the paramedics pulled up, Jared went completely limp and my husband was finally able to get a breath into him. He started to breathe and the paramedics gave him oxygen and took us to the hospital for our first of many hospital stays.

After the choking incident we were referred to see specialists at a Children's Hospital in our state. Jared's reflux medications were changed and we were sent home. Two weeks later he vomited and began choking again, so this time the specialist admitted us to the hospital for a few days. They changed his medications again, and this time he had no vomiting episodes while in the hospital. Everyone was pleased and ready to send us home. Before leaving, I pointed out to the doctor that the amount of his feedings he had gotten in the hospital was much less than normal and less than he needed, and that he had actually lost weight in the four days we were there. The doctor reassured us this was nothing to be concerned about and sent us home.

At home things continued to get worse. Jared would only take an ounce of formula and would refuse any more. What he did take he ended up vomiting anyway. We took him to our pediatrician and I cried as he was weighed and it showed he had lost more weight. The doctor put in an NG tube for feeding; telling us it would only be in a few weeks to build his weight back up.

With the NG tube in, Jared began refusing the bottle even more and his vomiting continued to get worse. We went back to the Children's Hospital, knowing that a G tube was going to be recommended. When we met with the GI specialist he recommended both the G tube and the Nissen fundoplication surgery. He sent the surgeon in to speak with us. Thankfully, the surgeon said he felt the Nissen was not appropriate at that time and we scheduled surgery for the G tube only.

In hindsight it seems ridiculous that even the G tube was recommended. Here we were putting feedings directly into Jared's stomach, which he would just vomit up anyway. He consequently developed a severe oral aversion from associating eating with pain and vomiting and completely stopped eating orally. After 6 months of poor weight gain, Jared had a week where he literally threw up every single feeding. I called the GI specialist who said the only option left was the Nissen. We decided to see our pediatrician, who agreed to send us to the other Children's Hospital in our state, for another opinion.

When the new GI specialist came in to see Jared, he immediately said Jared's problem was a motility disorder of his stomach and that he needed a GJ feeding tube to give him feedings into his intestines, bypassing the stomach. The next morning they put in the tube. After only gaining eight in the two months, Jared suddenly began gaining an ounce a day with the new tube. While we were so happy to finally have an option that allowed Jared to gain weight, we were kicking ourselves for staying with the first hospital and GI specialist for so long. The new specialist also said the Nissen was inappropriate for children with motility disorders. We thank God we got a second opinion before going through with a surgery that was not only unnecessary but would have made him even worse.

After a few months we changed the GJ tube to a more permanent J tube. While Jared continues to have excellent weight gain, he still continues to vomit throughout the day and night. It's almost unbelievable this is possible, as the only thing in his stomach is a small amount of gastric juice. He takes no nutrition orally. We're thrilled to see him thriving, but it is very difficult to watch him heaving and in so much discomfort.

Unfortunately there are no effective treatments at this time. We've been told this is a condition he most likely will not outgrow, so we hope and pray that new treatments are developed in the future so that someday he can learn to eat again and get through life without vomiting every day. In the meantime, it helps to meet other people going through he same thing to share ideas and experiences, and just to feel we are not alone in dealing with a condition that can feel so isolating.