Chugging Along

POSITIVES: Kiera is coming along. She has ups and downs. She seems to be beating the c-diff infection and is very active and alert. Her vent settings are coming down and we are getting closer to trying her out on a "home" style ventilator (in hospital) to see how she does. Kiera's formula feedings through her new g-j tube into her intestine are going fine. It will be at least a month before we get to try breast milk and potentially two months before we can try G-tube (stomach) feedings. We have a Care Meeting with ALL her doctors scheduled for May 8.

CHALLENGES (this week): Kiera had a bronchoscopy today to view her airway, and her trach tube may be causing a "pocket" of scar tissue to develop in her airway that may be the cause of some intermittent episodes of dropping her heart rate. She's had 5 in the last week and a half and they seem to be increasingly worse. She has a new, longer, tube ordered that will hopefully be here by the weekend. This tube will bypass the scar pocket and allow it to heal. Then we'll see if this corrects the heart episodes. The cardiologists are also considering that her beta blocker may be causing the trouble. Hopefully, they will be doing another echocardiogram and reviewing her dosage. A relatively minor development has come up with her eyes. Her opthalmologist says her gaze is exotropic--she has 2 lazy eyes caused by the muscles actually letting them set too wide which is common in neonates. It is not interferring with her vision or development, but will need to be corrected by surgery after she is discharged from the hospital, or at least once she is able to be on a home vent to visit his office.

ON A LIGHTER NOTE: She's cuter every day. I took her swing to the hospital which puts her right to sleep. She loves watching her mobile and toys in her bed. Her favorite toy, besides the long time favorite mobile, is a heart shaped toy called a "Whoozit" that was a shower gift from my friend Shannon Olfers in Arizona. It is an absolutely crazy looking toy, and she is enthralled by it. :) She also likes to hold on to her alphabet links that I hang over her head. She's maintained her weight while growing a little longer so the nutritionist now thinks she ranks in the 10th percentile for her adjusted age of 5 months and her length and height are more appropriate for eachother. Previously, she was a bit fat for her length from the steroids and pumped up calories in the NICU. She was also ranking in the 3rd percentile before. I guess that sums it up for the week.

Love,
Tree