June's Journey: March 2016

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.