Daddy really enjoyed holding you!!
Currently, she is on the vent still, but breathing room air. It gives her a little air now and then because it's like breathing through a straw and if she forgets to breathe (apnea) it reminds her. She has an arterial line through her umbilical area. Also, she is hooked up to several other monitors to watch her O2, her blood pressure, heart rate, and respiration. Kara had been having a lot of seizures which is very common with her diagnosis. She is on phenobarbital which initially caused to be very sedate. Yesterday, she seemed to "wake up" and was moving more normally and it was an exciting thing to see! Her phenobarbital level was 38.5 which they wanted it no more than 40, so were happy with that. We finally got her off the EEG study yesterday, so she is free of all the wires and I was able to hold her last night for more than an hour. Sweet time, that was!
CURRENT MEDICAL PLAN FOR KARA:
Dr. Morse (our neonatalogist) has decided that the first procedure we will do is to get Kara a G-Tube (gastrointestinal tube) placed for feedings. Currently, she is scheduled to have this surgery on January 25th. Recovery is 4-5 days. We will need extended childcare for that day as we would both like to be present at Shands while she is undergoing this surgery.
The pediatric ENT, Dr. Collins, spoke with us. He looked at the CT scan of Kara's nose and there is no way to do an airway through her nose. It is closed and there is no connection through for any possibility of breathing that way. He wants to try to extubate her and see how she does before he would do a tracheostomy surgery. Dr. Morse says we will give this a try, but that babies are nose breathers and she would have to "learn" to breath a different way, so it may not be successful. We will do this after her g-tube surgery is healed. If removing Kara from the vent is not successful, then we will proceed with doing a trach and that is the way to get her home. Kara has good lung functiion and Dr. Collins believes there is no more risk to do the trach procedure on Kara than any other patient. Praise the Lord because we were previously given other information! Recovery from trach surgery is about 1 week. All things considered, I believe we are looking at around 3 more weeks in the NICU if all goes well.
In addition, Kara had an endocrinology consult. One of the scans done showed that Kara is missing half of her pituitary gland. She is currently getting hydrocoritisone to replace that hormone which is lacking and caused her cortisol levels to be off. They are watching her thyroid function, also, and may add synthroid if she needs it. Kara is taking 50ml feeds of mom's milk and tolerating it perfectly. No reflux or anything! She's peeing and pooping just like any normal baby does. I am doing amazingly well with pumping every 3 hours and she is totally on mom's milk. I am hoping to keep this up as the antibodies this provides is best for her as she goes through surgery. Kara was 5 pounds, 14 ounces at birth and as of this morning is 6 pounds, 1 ounce. We are praying she gains weight appropriately as I usually have trouble with supply and fatty content of my milk. (I am wondering if they will call to supplement her if her weight gain doesn't pick up...)
We have been impressed with the nursing staff at Shands. They have been very friendly and helpful and caring with our baby. Also, we've been approached by many of the staff members that had known of Kara and had been praying for her before she arrived. God is so good!
So currently we are in a holding pattern for the next week awaiting Kara's g-tube surgery. Pray we can hold it together at home, at work, and with our sweet daughter. Stuart is going back to work this week. I am hoping to be able to drive at one point. My truck is in the shop and we are praying it's a minor repair... This race can be exhausting. I feel torn because my family needs me and my baby needs me. I am praying for God's grace one day at a time. If I seem scatterbrained, I am! Sometimes I am tired. Thank you for all of your prayers!