Happy New Year (Thurs 1/1/09)

I woke up Thursday morning with a plan of attack. I needed to pay attention to the doctors and the information that they were sharing with me. I needed to ask questions...make them spend as much time as they needed in order to make me understand what was wrong with Kenzie and how they planned on attacking this disease and helping her get better. I started a journal to monitor the tests and their results to monitor our progress. I felt stronger and more involved in her care.

4 am - blood gas and chest x-ray: Blood gas numbers monitor the amount of oxygen in her blood and the acidity. These numbers have remained stable from the previous tests, however they are still not optimal. The chest x-ray shows that the nemothorax appears to have resolved itself, as there is no additional air in the chest cavity leaking from the lungs. This is positive news and we are very happy.

11 am - Blood gas: They remain stable, therefore, no changes will be made to her pressure settings on the ventilator or her medications.

2 pm - Again, blood gas is stable, no worse or better from previous readings. While this is good, the neonatologist is hoping to see some improvement soon. Also, an echo cardiogram was performed this afternoon. There are 2 valves in the heart that close soon after birth, and the tech thinks that one of them may still be open. We need to wait to hear back from the cardiologist to confirm.

4 pm "Touch Time" - Since Kenzie's condition classifies her as "low stimulation," they are only "touched" a couple of times a day. During this time, their diapers are changed, turned, adjusted, etc. and the family is allowed to help. Nonnie, Daddy and I went down to the NICU for this one. Daddy was able to take her temperature and Nonnie and I changed her diaper. It was good to be able to interact with her, even though she was still hooked up to all of the machines. In a small way, it felt like caring for a normal newborn.

5 pm - Another visit from the neonatologist. The cardiologist believes one of the valves in Kenzie's heart is still open, thus creating the pulmonary hypertension. Time is needed to see if the valve will close on it's own as well as give the lungs more time to develop. The original plan was to start to try weaning Kenzie off of the respirator, but this will have to wait until the valve closes and the lungs get stronger. Very disappointing news.

8 pm - Blood gas tests return numbers that are the highest so far! We are happy to get some form of good news. The nurse reminds me that this is how it works in the NICU...sometimes you get steps forward only to take steps back.

11 pm - Blood gas numbers stable.