KT's Story

For such a little girl, my CurlyGirl has quite a long story. Most of the pregnancy was fairly normal, just a few hints of what was to come. Induced labor, just like her big sister, no big deal. After 9 1/2 hours of "pre-labor", I still hadn't dilated beyond 3 cm but they were moving me to the labor room, any way. (not the delivery room). In fact, the nurse asked me if I wanted to walk, (I didn't) and was swiftly wheeled to the new room where my water broke. Ken and I were the only ones in the room, the bed hadn't even been made yet. KT was born 11 minutes from the time I left the induction room.

From this room KT was taken to the Neonatal Intensive Care Unit. Unrelated to KT's "unusual" entrance, she was born with a condition called PPHN (Persistent Pulmonary Hypertension). This condition causes the pressure in the blood vessels leading to the lungs to increase to the point where the baby's blood continues to bypass the lungs after birth, like it does in the womb. These condition is often temporary and reversible; most children who survive PPHN have no lasting effects beyond a possibility of developing asthma or hearing problems.

KT was in NICU for two weeks before the condition reversed itself on Thursday; she was going to come home on Monday...but on Sunday, she developed jaundice and a necrotizing infection of the digestive system. Two more weeks in the NICU...KT came home. At this point, our only concern was that the physical therapist in the NICU noticed that KT was "floppy". Her muscles weren't "tight" enough and her tendons had pulled her legs into an unsual position. At the time, the doctors thought this was due to the strong sedatives and medications she had been on for the first month of her life. We are very grateful to Vickie for arguing with the doctor that KT at least needed physical therapy for her legs. Because of her willlingness to adovcate for us, we had therapy and follow-up doctor's appointments scheduled before we left the hosipital. Within a month of coming home, we had therapists coming to the house.

There was never a point where anyone said "There's something wrong here." The closest was when her neurologist said, "You've known for a while that something's not right here." Even now we don't know exactly what that is. As KT missed more and more milestones, she gained more and more therapists and doctors. For over a year, she had three therapy appointments at home and five at Sparrow each week.

"So what's wrong with your daughter?" is what my students usually ask. I'll answer that next time I post

Afternoon of Day 1

We're back. Today we met with Dr. Marc Patterson, the infant neurology specialist, CurlyGirl gave a urine sample and we met with the surgical team for tomorrow's procedures. Dr. Patterson interviewed Daddy and I for about an hour and we received the first scheduled version of our week. Dr. Patterson is going to run some more extensive DNA tests which will be looking for genes with missing, moved or extra sections of genetic information. (This is why we study genetics!)

In order to run these tests, they need more DNA samples. So, tomorrow KT will be sedated so the surgical team can 1) Draw blood 2) Remove skin and muscle samples 3) perform a spinal tap. We won't know what time she is scheduled for surgery until after 8:00pm (CST). Some of these samples are being sent to New York and Georgia for testing and analysis.

Thursday, we meet with a genetic historian, a genetic counselor and then again with Dr. Patterson at the end of the day. And we should be done; however, we have already paid for the hotel room and our schedule could change.

This is the end of the today's blog for family, friends and students. Later tonight, I'll write a posting for people who are bringing toddlers to the Mayo Clinic describing the types of things we wanted to know before we came.