April Update

Since our five day stay at Lurie's, the interventions/approaches to June's care seem to be helping tremendously. June's tube feeds were increased from four to sixteen hours. We were skeptic because her J tube feeds were causing trouble for June at night. She was having such bad reflux that it was putting pressure on her trachea, causing it to close. However, we now have June propped up at night so she is sitting upright. We also have her G tube set to gravity so when her gastric juices build up, they are draining out instead of refluxing up her esophagus. June is also now taking Prilosec and Zantac for her acid reflux.

Last Friday, we headed back to Chicago for a swallow study and follow-up appointment with pediatric surgery. During the swallow study, they tried feeding June barium (the same consistency as milk) and sweet potatoes while taking X-ray pictures of how she swallowed her food. June had a swallow study before she was released in November and again when she was hospitalized in December; however, when we were at Lurie's, we had two speech therapists watch June eat. Both were concerned how "wet" she sounded when she was nursing. We were told to limit oral feeds for the week and a half between her discharge and swallow study. June was only allowed to eat once or twice a day by mouth in the late afternoons. Since there was a concern with how noisy June got during and after eating, we asked to repeat the swallow study.

June was all smiles, bashing of her eyelashes and laughs, until the swallow study began. We had not yet started feeding June solids since she had just started sitting unsupported. She was not a fan of the sweet potatoes or the barium (which is a chalky consistency). They found that when June drank the barium, she was aspirating or inhaling the milk into her lungs. They also noticed that she had a bubble of air coming up her esophagus as the food tried to go down. Since inhaling foreign objects (like milk) can cause pneumonia, they decided it was best if June stopped taking any liquids by mouth. All of her milk will be given to her through her J tube - no more nursing or bottles, which was a big disappointment. We are in the process of getting speech therapy set up with Easter Seals through Early Intervention, but in the meantime, the speech therapists wanted us to try giving June solids. Instead of giving June vegetables first, they want us to start with fruits so June would enjoy solids. We are also suppose to work in avocado in as much of her food as possible because of the healthy fats.

This weekend we worked on giving June solids for breakfast, lunch and dinner. Unfortunately, we noticed that her breathing got loud and wet when she ate. She was also having gagging and coughing fits. After consulting with pediatric surgery today, we are not allowed to give June solids by mouth either until a speech therapist is present.

After the swallow study, we headed up to meet with June's pediatric surgeon. Unfortunately, June did not gain any weight between her discharge and the appointment. And now that she cannot consume any calories in liquid form, her tube feeds needed to be increased. June is now up to continuous J tube feeds 21 hours a day (she was at 22 hours a day when we first brought her home). They are hoping to slowly increase the rate that she in fed so we can eventually go down in hours. We also had to add Elecare formula back into her milk to increase the calories she is getting to 25.

We have weight checks every week between now and her next surgery in May and will continue to communicate with pediatric surgery to determine June's feeding schedule.

Today Easter Seals came to evaluate June's progress in her development. Overall, June scored in the six-and-a-half month range, so slightly delayed. When they evaluate June, they consider her to nine months old but eight months corrected since she was born a month early. Her social skills were rated at ten-and-a-half months, feeding at four months, and communication and physical development between four and eight months. We will have another evaluation before her first birthday.