March 24, 2010

Kiera is finally back to her "old" self.  When she was discharged from Children's Hospital on Tuesday, February 9, she was a happy and relatively easy to care for baby (minus the NG tube). Something changed on Friday, February 19 that made her miserable until Thursday, March 18. On Friday, February 19, Kiera was consuming about half of her caloric intake orally and it was also the day that we started giving her ranitidine for her gastric reflux. We believed that this medication would help her be more comfortable and then she would be able to consume all her feeds orally. Over that weekend, she slowly started taking in less until she consumed nothing orally by Friday, February 26, 2010.

We were stumped as to why Kiera could have taken such a giant step backwards. Even the team at the feeding clinic could give us no explanations - they said it could be anything. Soon we discovered that Kiera had thrush so we dealt with that. Then she caught a nasty cold and 10 days later it was finally gone. During this time she was constipated and had painful gas which we are still dealing with by giving her prune juice. In addition, she had the following symptoms: swollen eyelids, sleepiness, skin problems, vomiting (which she had never had with her reflux), and general discomfort. These symptoms are known side effects of ranitidine along with headache, nausea, dizziness, and blurred vision. We stopped giving Kiera the medication on Thursday, March 18 and by the next day she was much happier and has kept improving as the days go on.

In the middle of all this, we asked that Kiera have her 7-day NG tube replaced with a 30-day NG tube. At first, we thought this was a great thing. The tube is much softer and it moves out of the way when Kiera vocalizes. As a result, her cry is much louder and she is much more comfortable with cooing. On the other hand, because it is so flexible, it tends to curl up inside Kiera's esophagus and throat and she is gagging much more than she did with the 7-day tube. We called Kiera's surgeon today to schedule surgery for a gastronomy (insertion of a G-tube). The feeding clinic pediatrician was surprised that Kiera didn't have a G-tube placed during the surgery to repair her esophagus as this is the typically done. Unfortunately for Kiera it wasn't done when she was 10 days old and will likely only occur when she is 4 months old. Operating room time is booked up until May so Kiera will have to have the NG tube in her throat for another 6 weeks.

Yesterday, Kiera had an appointment with a women who makes prosthetic eyes.  For Kiera, this means that she will have a very thick "contact lens" made especially for her.  On May 12, Kiera will be sedated and an impression will be made of the space between her existing smaller eye (microphthalmos) and her eyelid.  I should make it clear that her smaller eye is not diseased and the tissue is healthy so her eye will not be removed.  Rather, this contact lens like prosthetic will just make her right eye look the same size as her healthy normally developing left eye.  Kiera will be fitted with her new eye on May 13 and we will take it out each night and put it back in each morning just like regular contact lenses.

Today, Kiera had an appointment with an OT at Boundary Trails hospital.  Kiera seems to developing just fine.

It seems that we are doing a lot of waiting for the next appointment.  So while we are waiting for appointments and for Kiera to gain some feeding skills, we have to remember not to let life pass us by.  This past weekend, the four of us ventured out together and Keith, Kiera, and I watched Piper perform at her first ballet recital.  Piper had so much fun and Kiera fell asleep.