June's Journey

Wednesday, April 20, 2016

8 Months

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

Monday, April 11, 2016

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!

Friday, April 8, 2016

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.

Sunday, March 13, 2016

Changes Galore

Our schedule has been relentless, so updates have been few and far between. My goal was to post before June turned seven months, but....Unfortunately, every one in our house has been ill (all with something different) this week, so we have been busy recovering and sanitizing. June has been in and out of her pediatrician's office three times. Last week, we noticed her starting to sound congested, so we used her nebulizer to give her saline treatments. By Tuesday, she wasn't getting better so the doctor started her on an oral steroid to calm the swelling in her airway. On Thursday, she was still struggling to breathe so they upped the saline treatments to Albuterol to help relax the muscles in her airway and increase airflow to her lungs. On Friday, they added a inhalation steroid. As long as we do treatments every four hours around the clock, she sounds okay. The doctor said to not necessarily expect her to sound better but that she shouldn't get any worse. At this point, we aren't really sure what she has contracted. The different doctors we have seen have mentioned croup or RSV coupled with another virus that is complicating her breathing, but her nasal swab came back negative (which would tell us it is RSV, rhinovirus, rotavirus, etc...). So far, she has only had a low-grade fever every so often, but if it spikes, they have warned us that a hospitalization might be in order. We are keeping our fingers crossed that is not the case because we have heard that the hospitals are full of some scary stuff right now.

Before June's upset these past two weeks, her pediatrician had been decreasing her continuous feeds every two weeks by two hours. Since coming home, June's continuous feeds have been reduced from 22 hours a day to six hours a day. With her illness, she has lost weight the past two weeks so her feeds were upped to eight hours a day. Two weeks ago, June weighed in at 14 pounds, 8 ounces. With her weight loss, she is now down to 13 pounds, 15 ounces (which drops her below the fifth percentile). The past two weeks we have also been working on moving her feeds to her G tube. We alternate the continuous feeds every other night between her G tube (the feeding tube in her stomach) and her J tube (the feeding tube in her intestines). We are hoping if we can get all her continuous feeds to her G tube that they will remove her J tube soon (maybe even at her March surgery follow-up). June can now successfully eat about 3 ounces in a sitting without vomiting. She still needs to be vented when she nurses because her stomach cannot handle the amount she takes. We feed the connector from her G tube into a bottle and the excess drains out while she eats. The bottle in the picture is 12 ounces - she usually has between four to twelve ounces extra.

June's therapist at Easter Seals comes to the house every other week for physical therapy. When we initially met, a goal was set for June to sit independently by the month of June. She is making amazing progress, and (since I started writing this a couple weeks ago) June has since started sitting up unsupported! We are also working on exercises that help her get in and out of the sitting position and stretches to lengthen her neck muscles. After looking right for four months in the NICU, June is very tight on her left side and "cheats" to look left (or just refuses to, in true June style). After last week, we started some strengthening exercises that have June getting into a crawling position.

In the beginning of February, we had a genetics appointment. We did not get a whole lot of information since we already had the Amniocentesis that told us June did not have a trisomy of the 13th (Patau Syndrome), 18th (Edwards' Syndrome) or 21st (Down Syndrome) chromosome. We could have a sequencing done of her chromosomes but the doctor told us that it is only 40% accurate. At this point, we are going to continue monitoring her development with Easter Seals, and revisit the genetics in the future.

We also had a follow-up with the neurosurgeon. The ultrasound of her brain is still showing that the ventricles are large (ventriculomegaly), but they are not overly full with cerebrospinal fluid. She will continue to see the neurosurgeon and has a follow-up in August. To be honest, we haven't really asked about how long June will need to be monitored/be at risk for the ventricles overfilling and putting pressure on the brain (hydrocephalus). Since her symptoms seem to be mild, we have been more focused on the more pressing issues.