10 Month Photos

May's Update....In June

We are long overdue for an update. Things have been a little hectic with Jason's new shift assignment and wrapping up at my current job and preparing for my new one - not to mention the purpose for this blog: June's medical care.

In April, June had another evaluation by her developmental therapist through Early Intervention. She noted that June was starting to fall behind in her speech milestones - actually, she is falling behind in all of her milestones except for her social skills. Her social skills were developmentally ahead of her age. After a speech assessment in May, her case manager added speech therapy twice a month to her care plan. There are only a certain number of EI speech spots in the area, so June has been on a waiting list for the last month until a therapist has an opening. We will start therapy with Easter Seals soon, and we are very happy she did not have to wait too long for her services. June was also suppose to have a feeding evaluation in May, but it was a week before her airway procedure so we had to reschedule. When she has her evaluation, the therapist will determine what feeding therapy services she will need and how often.

Back in March when June lost weight and was struggling with breathing, a scope showed that she had cysts on her trachea from being pulled on and off the ventilator. In May, we headed back up to Lurie's Children's Hospital to have the cysts removed. June has tracheomalacia, which is where the support cartilage around her trachea is not as strong, allowing the trachea to collapse. The cysts only blocked her airway further as it collapsed so removing them would help with her ability to breath. The procedure took about an hour, where her ENT doctor removed the cysts and soldered where they were so the cysts wouldn't grow back. Because her airway was altered, she had to spend the night in ICU. By the time they brought her up to her room, she was awake - groggy but awake, which was a very nice change. She had a good rest of the day, resting and cuddling. No matter what she goes through, our June Bug has one heck of a positive attitude. She laughed and smiled with her nurses, doctors, mom and grandma all day long.

We were discharged the next day, but had to return a week later for another scope. They used a bronchoscopy to make sure her cysts had not grown back and the structure of her airway was sound. Since they did not have to alter her airway, Jason was able to bring June home after an hour of observation. After the procedure, June's loud breathing decreased significantly. She is still slightly loud on her exhale, which is a characteristic of tracheomalacia and something she will eventually grow out of.


With June's weight loss, her feeds have been increased. She is now being fed continuous through her J tube (placed in her intestine) for 21 hours a day at a rate of 43 milliliters an hour, which is about 1.5 ounces. We had to add Elecare back into her milk to fortify it. After increasing her feeds and fortifying her milk, June finally started gaining weight again. At the end of May, she weighted 16 pounds, 8 ounces - we finally made it to nine month clothing! Unfortunately, we had to go to the doctor this past week, and she has started losing weight again. Her breathing is getting loud again, and she started grabbing at her chest and holding her breath until she turns bright red. We are concerned her acid reflux is getting out of control again. Our doctors now have us alternating her two antacid medications so she is getting a dose every six hours, and they have increased her dosage amount to the most she can receive on both. The reflux could be causing her loud breathing because as her esophagus expands to accommodate the reflux, it puts pressure on her trachea, causing it to close more. It is definitely a concern that she is refluxing up to her neck when she gets fed all the way down in her intestine and her stomach is drained all night.

June should also be getting a new accessory soon. Our PT noticed that the shape of her head has started to change with her recent hospital stays. We were referred to Comprehensive Prosthetics and Orthotics to get her head measured. We are still waiting insurance approval, but the doctor felt confident that June would be approved for a helmet to help shape her head as she continues to grow. Basically, the right side of her skull has shifted forward.

Sawyer turned 3 this month

Helping big brother celebrate - June loved the balloons

9 Months

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.