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.

8 Months

Just in time before June turns nine months....

Our Stay at Lurie's

Since March 2nd we have been concerned about June's increasingly loud breathing. We first suspected it was caused by a virus, so we immediately started saline nebulizer treatments over the weekend. The next week our doctor called in an oral steroid and did a nasal swab for viruses, which came back negative. Later in the week, June was not improving so they upped the nebulizer treatments to albuterol. Her oxygen levels had also dropped to 90%, which is the lowest they like to see before they admit to the hospital. By the end of the week, she also had an inhalation steroid.

                                      

We continued to not see an improvement. She was not running a fever, but our pediatrician took an X-ray of June's lungs to make sure she did not have fluid in them, which could lead to pneumonia. Her X-ray came back fine so the next step was to head to the surgery team in Peoria to check out her surgery sites.

                                    

In Peoria, June had another upper GI study to check her surgery sites. The study didn't show any leaks, but they were concerned about the narrowing of her esophagus and a possible narrowing where the blockage in her small intestine was repaired. Since June had lost close to a pound in this two-week time period (dropping from 14 lbs. 8 oz. to 13 lbs. 10 oz.), they increased her feeds from six hours to eight as well as the amount she gets in an hour from 33 milliliters to 40. A week later we checked back in. June had gained some of the weight back to put her on the growth curve. The surgeon wanted to give her two more weeks to gain weight and look at her again. It seemed like June's breathing had quieted some, but really, we had just become use to it.

Last Sunday morning around one, I was awaken by June gagging and choking-she was gasping for air.mWhen I picked her up, she instantly threw up some saliva. We want to avoid the ER because of the exposure risk, so I called the on-call doctor to check in. He said that as long as I was comfortable caring for her, I should keep her at home as long as I could. At this point, June had thrown up more saliva or mucus and seemed able to breathe easier. I sat with her sleeping upright on me for the rest of the night so I could monitor her. On Sunday night, the same thing happened, only earlier in the night. Thankfully, Jason was off so we rotated staying up with her. Every night of the week, June continued to have these episodes.

On Thursday, our pediatrician referred us to Lurie's. We were scheduled for an appointment on Friday. After meeting with the doctor, she felt we should be admitted to run some tests on June and figure out what exactly was going on. We got to our room on the twentieth floor at about seven that evening. Over the weekend, June had some fluoroscopic  studies done on her tubes and X-Rays of her chest, airway and abdomen. From those, the doctors ruled out a narrowing of her esophagus causing the problem, but the studies did show significant acid reflux. They also sent a scope down her nose to look at her airway. From that scope, they decided to do a bronchoscopy today. It was a short procedure where they took a camera down June's airway. They also looked down her esophagus at her repair. From the X-rays and dye studies, they didn't think their was a leak or reformation of a TE Fistula but wanted to be sure.

The bronchoscopy confirmed that June has tracheomalacia, which means the airway collapses or closes so much that it makes it harder to breathe. Pressure on the airway from acid reflux can cause the airway to collapse more. They also found that June has some cysts on her airway from being on the ventilator for so long and so often. She will need to have those removed in a month to also relieve any pressure on her airway. At that point, we will also have more tests and pictures taken of her insides to see if the fistula repair in her small intestine is narrowing and if she may need another nissen to help control her acid reflux.

We are all worn out and ready to come home!

A trip to Lurie's

After a very rough week, we headed to Lurie's Children Hospital in Chicago to find out what is going on with June. For the last month, June has struggled with gaining and keeping weight on. Her breathing has become very loud (imagine Darth Vader gargling salt water through a megaphone), and she's choking and sputtering at night, making it difficult for her to breathe. For the last week we have had to hold her upright the whole night in order for her to catch her breath. 

We had a consult this afternoon, and after listening to what was going on and examining June, the surgeon felt that admitting her for tests was best, with a possible procedure next week. We don't have a lot of information right now, but we will update once we get a handle on what's going on. We appreciate all your thoughts and prayers for our little Wonder Woman.