Kailey's Progress

Today I feel very tired and almost exhausted. I went down at midnight to deliver a bottle of freshly expressed liquid gold (also known as my breast milk) and the nurse told me that the baby had lost some weight and was at 6 lbs. 14 oz
In the morning I asked that they take the catheter out of her hand (she wacked herself on the face with the connector that was hanging off of her hand) and they did! So nothing is poking at her anymore. She is no longer taking antibiotics, her oxygen level is at 40 cc and she started at 150 cc. The goal is to turn it off so she is getting close. Dave and I met with the doctor and she said that Kailey's progress was amazing and it has surprised her. She is very surprised at how well she eats, how fast she has moved in the oxygen and how well she responds. They are still trying to figure out how much oxygen flow she needs (the reason she has it is because she has pulmonary hypertension) and there may be a possibility of sending her home with an oxygen tank in case she gets stationary in her progress. They tried lowering the flow again but it was too hard on her so I hope that in the next couple of days they can lower it more as she adjusts to all the changes she is going through so fast. The doctor is going to take a look at the baby’s belly button because it appears to be an umbilical hernia but hopefully it is not one that will require future surgery. The doctor also told us that she received a preliminary summary on the chromosomal testing and that the full test is still in process and full results will return next week. The preliminary results are supposed to be very accurate and Kailey tested positive for Down syndrome. Next week we will know which kind of Down syndrome she has.
We also met with the case manager for the NICU and with a social worker regarding resources in our state for children with special needs. We did not get a lot from them but will be referred for some services that are available. I hope this helps us become better educated in understanding Kailey’s needs and how to help her achieve her potential and help her develop the skills she will need as she grows.
I was visited by a friend and family and felt well fed both physically (I got a yummy lunch and dinner) and emotionally. I feel the Lord is taking care of our needs at this difficult time and feel grateful for the support, prayers, calls and emails from friends and family. As I was walking in the scorching heat of the afternoon (taking a break to breathe some fresh air) I was thinking that what we have to do is to move onward, look upward and rise heavenward so it shall be done.