Update on Kara

MEDICAL STATUS INFO FROM YESTERDAY...

We finally got to meet with Dr. Morse to discuss our baby girl when we were at Shands yesterday afternoon. Kara, evidently, has a very difficult airway. Her lungs are functioning fine, but her airway is so small. If they remove the vent, it will collapse. I believe this has to do with her anatomical structure and it's part of her "mid-line" defect which is related to HPE. In order to get her home we would need to do a tracheostomy. I was thinking we would need to do this... What they are trying to determine is what the risk of doing this procedure is with little Miss Kara. Because her anatomy is so difficult the risk may be too great. We don't want our little girl to pass away in the OR...
**Our prayer is that the risk is minimal and that she would be able to have a trach.

She was still hooked up to the eeg study when we arrived. They upped her phenobarbital to a higher dose for "maintenance" so that she would not have seizures. Some of them are sub-clinical meaning you can't see them, but they show up on the monitors. We don't want her to be over medicated and Dr. Morse agrees. The Neuro Doc wants the seizures ALL gone, so I think Dr. Morse took the middle road on her dosing and they were watching overnight to see how new dose worked. I am hoping when we return this morning that the eeg machine is gone. Suzanne (NICU nurse we love) said she needs a bath. I would love to see that!

Another condition they found on Kara yesterday is a problem with her heart. It's called Tetrology of the heart which is a narrowing of one of the arteries (?). She has what is called Pink Tet. Dr. Morse said it is not a problem right now. Normally, a baby would have surgery at around 6 months to correct the condition. If she is still with us in one month, the cardiac team wants to see her and re-evaluate this condition. So currently this area is not an immediate concern.

Dr. Morse says she is stable. The MRI shows very underdeveloped eyes (optic atrophy). She has not opened them, but she cannot see with them based on the MRI. (I do have a friend whose daughter has the same thing and opened her eyes at 4 weeks old...) Kara is taking 32 ml of formula (or the breastmilk project I am currently working on) at every feeding. This is about 1 ounce.

Right now we just want to spend time with our precious daughter. We don't know what her future holds. We are trusting in God and thanking Him for the miracle of her life. I treasure every moment I have with her. Stuart has been going up in the late evenings and reading books to her and praying over her. Our immediate needs are people to come care for our children so that we can be in the NICU. Yesterday when I went it had been 24 hours since I had seen her. Right now I would like to go twice a day if I can physically handle it. Jamie is probably going to be watching the children in the evening hours when we go. I just don't want to overburden him. The 5 youngest seem to listen best to an adult, not their own sibling.Thank you for ALL of your prayers! We covet each and every one! We know that God can move in Kara's body (and he already has) and make things possible. I am trusting in His plan for her and just offering my praise and thanksgiving for Kara Faith's life so far.