Team Meeting

On June 29^th we met with the neurologist who had reviewed the MRI scans of Lilly. She said that everything appeared to be normal except for her cerebellum. The cerebellum has three parts. The middle part is called the Varmus. It appears Lilly’s Varmus is either too small to appear on the MRI or is does not exist. The neurologist feels that Lilly will just struggle with her motor skills such as her movements will be choppier instead of flowing like you or me. Lilly may struggle to roll over, crawl, or walk on schedule. We said that’s fine. We are a clumsy family her sister has already knocked out her two front teeth so grace doesn’t run in the family. As for her learning we will have to wait and see but that portion of the brain appears to be normal. There also appears to be some extra fluid on her brain. At this point it doesn’t require surgery. When she arrives they will test everything again and decide on whether or not she will need a shunt in her brain to drain the extra fluid. The doctor was very informative and even showed us the MRI scans.

On July 2^nd we had a BIG team meeting. In this meeting we met with the Neurologist, Neonatal doctor, and Cardiologist, Cardiac Surgeon, and Case manager. In this meeting we discussed Lilly’s problems, what to expect over course of the next few months, and what we are facing for the future. All the doctors were very positive on Lilly’s prognosis. They say at this point she will make it and we need to get ready for her birth. It is the total opposite of what we were told 3 months ago. So here is the rundown of what is to happen in the next few months. Over the final 8 wks of pregnancy Lilly will be closely monitored. We will visit with a DR twice a week from now until delivery. We will deliver at St. Joseph’s hospital in Phoenix. When that exact date is we don’t know. We are hoping to get a date next week. It will be a schedule c-section. They feel this will be a safer route for Lilly and me. At c-section the room will be filled with doctors and nurses from the NICU to help stabilize her when she arrives. Once she is stable I will get to see her for a moment. Lilly will be moved down the hall to NICU where she will endure several hours of testing such as ultrasound, MRI, blood test, breathing test, blah blah. It will be several hours before she will be able to receive visitors. OF course Josh will be with her the entire time. Once I am out of recovery I will get to see her. After 24 to 48 hours in the NICU she will be moved to the CARDIAC ICU. She will remain in the cardiac unit for at least a month. Between day 5 and day 7 of life they will perform the surgery to repair her aorta valve that appears to be too small. At this time this is the only surgery she will need during infancy. She might need a “tune up” later in life. Her other issues will be address while she is in the cardiac unit. We have to wait and see what she show us when she gets here to determine what do about the brain, kidneys, and if there is any other heart issues.

After the meeting we toured the hospital. We went into the NICU so we have a mental picture of where she will be and what to expect. We also went through the Cardiac Unit. In this unit she will be in a private room so Summer and Bryson will be able to come and visit for longer than 15 minutes. The cardiac unit is beautiful and the staff is so nice and positive about what is to come.

So that’s the run down for now. Could change as always. Check back late next week for a delivery date. Thank you again for your prayers and support.