Stacie was born on April 11, 2001 by c-section, because she had inhaled amniotic fluid she was on a ventilator for the first day. She weighed 7lbs 13oz, was very puffy and would not feed for the nurses by bottle, with formula or breast milk. She was brought to me so I could attempt to feed her, she fed from the breast but was a very sleepy baby. We needed to strip her down and use wet wash cloths to keep her awake to eat. She began refluxing after her first feed. I woke to Stacie’s arms and legs banging against the sides of her bassinet, her feed was flying out of her mouth!

At two weeks she continued to lose weight, she stopped nursing and we began bottle feeding Enfalac formula, she would only take one to one and a half ounces every 2 hours and we had to wake her for her feeds as she rarely cried for food. Stacie would guzzle her feed within minutes, burp and then refuse to eat more.

At one month she was diagnosed with failure to thrive and was seen by a pediatrician who sent her to the hospital for CT scan to check for hydrocephalus as she had a large head. The scan showed none, and we began feeding 24cal formula. One of the nurses was helpful with trying different nipples to encouraged larger consumption and we could sometimes trick Stacie into a few extra sucks.

At two months she started taking Zantac and she would take about two ounces every 2-3 hrs. We still needed to set the alarm clock as Stacie would not wake to eat. Actually feeding her was most successful when she slept.

At three months Stacie was referred to a sick children's hospital for a possible metabolical disease as she only gained 1lb since her birth and would only consume a maximum of 17oz daily. At this time an NG tube was inserted as she refused to eat completely. Many tests were done including xrays for bone age, blood for degenerative genetic disease, CF sweat test, and a CT scan. We went home after one week with a team consisting of a dietician, an OT, and a nurse waiting to help care for Stacie, eventually we lost all oral feeding and she began to gain weight slowly but surely. She was fed Similac 27cal. and her medicine was changed to Losec and she was throwing up a lot. She was still unable to hold her own head up at three months old.

At six months she had a dopler ultrasound done as she has prominent veins and hemangiomas. She also saw an eye specialist to rule out infection from early infancy. Stacie has quite a few anomalies, a large head, low set ears, appearance of a wide space between her eyes, two hemangiomas, very prominent veins on her head and face, extreme feeding difficulty, as well as a flat forehead. Specialists were certain the feeding difficulty was neurological therefore suggested a g-tube be inserted before an MRI. The MRI showed a healthy brainstem, large ventricles, and an enfarctment, the same as in her CT scan.

Stacie will eat minimal amounts of smooth textures, tries to eat other food but will not swallow it and will gag & retch. At 18mths still has reflux problems and weighs under 19lbs 4 oz. she understands that the tube and pump mean feeding time and will cry if it takes too long to hook her up. She walked at 15 months, at 18 months we began to use sign language to help communication as she did not form words. Stacie really enjoys trying to feed self, is excited by the sight, smell and taste of food but does not seem to understand that she needs to eat it. She also sucks a soother and puts toys in her mouth.

In November of 2002 Stacie had a video fluoroscopy done to assess her swallow. It showed she can swallow, just chooses not to most likely due to the pain or discomfort from reflux. We may be making a change in her medication and are continuing the tube feedings while offering oral feeding. Stacie won't take textured foods as of yet. We have recently changed her formula to a pre-digested type called Peptamen Jr and there has been a huge change in her disposition. She is much more sociable, active and verbal.