Knowing Wednesday would be our last quiet night without the assistance of a babysitter, we went to one of our favorite restaurants in Gainesville, Manuel's Vintage Room www.manuelsvintageroom.com, for a great dinner. Rachel's favorite is the lobster ravioli with the truffle cream sauce. We highly recommend it if you are in town.
Thursday morning we went to NFRMC for the big event. Obviously, nervous and excited are understatements. Apparently we weren't paying attention to our instructions, because when we arrived at 7 am, they didn't have a room for us. They had delivered 8 babies the night before and we forgot to call ahead to let them know we were coming. No worries. We went to Starbucks and then came home until they called us back at about 10. We got settled in our room and I warmed up my repertoire of completely inappropriate humor. Watching someone check your wife's cervix can be pretty entertaining if you know how to do it. Rachel was given Cervidil at about noon and we were told to just chill out. I had no problems with that. By 7 pm, however, Rachel had a real problem with that. The Cervidil was causing some pretty painful contractions at about 90 second intervals, but not dilating at all (maybe 1 more cm). At midnight, she had the Cervadil removed and was given some pain medication so she could sleep, and we would see Dr. Delker in the morning.
Friday morning (May 28th), Rachel was given Pitocin to try to get Ginny to come out and play. Ginny did not respond well to the Pitocin. Each time the nurse (also named Ginny, and a very awesome lady) would increase the dosage, baby Ginny would lower her heart rate, which was not a good sign. They decided to back off the dosage and see what happened. Ginny responded well, so we tried again, and again she was not happy. At about 10 am we decided with Dr. Delker that we would perform a Cesarean at about 2 (immediately following the scheduled C-section at noon). This would prove to be a wise decision.
Some of you might know that I had imposed Liquidated Damages upon the child for her tardiness in the amount of $100 per day, payable on her 18th birthday. By the day she was born she was up to $1200. Since we had to go in to get her, my friend David Weintraub reminded me I would probably have to go after her bonding company. Then I came to the realization that I AM HER BONDING COMPANY. So much for that idea. (Just a little nerdy construction law humor for those of you that get it.)
Rachel went off to the operating room for the C-section a little after 2 pm on Friday. I put on one sexy hairnet, a gown, mask and booties and followed a few minutes later. It's a scary sight to see your wife strapped down to an operating table with a room full of people. Rachel was pretty scared too. Luckily Tony, the nurse anesthetist hooked us up with the iPod speakers in the OR, so Ginny was born to a soundtrack of Bob Marley & the Wailers. By the time we were done everyone was ready for an island vacation - except Ginny, of course.
Ginny was born at 3:21 that afternoon. Right after removing her from the womb, Dr. Delkershowed her to us for just a few seconds, and then handed her off to the neo-natology nurse. She was a blue baby. I'm told that's normal at first, but when she didn't "pink up" right away, we kind of thought something was wrong. Dr. Delker told us that she had the umbilical cord wrapped around her neck twice and that she had a bowel movement in the womb (called merconium). She hadn't been out long (maybe 10 minutes) before she was brought to the special care nursery. They brought me back to Rachel's room to wait for her to get stitched up and said that maybe Ginny would be able to come to the room if she got good color. Rachel was wheeled into her room a few minutes after that, although it felt like an eternity. Very shortly after a doctor from Shands, a neonatologist came in and explained that Ginny was still having trouble breathing and she needed to be transported to Shands very soon. I had to go break the news to Doug and Wendy in the waiting room, which is one of the hardest conversations I've ever had. Wendy was able to come stay with Rachel while I waited to go see Ginny.
Seeing my daughter for the first time was at once a wonderful and heartbreaking experience. She had been intubated, and she had lots of IV's and sensor leads stuck to her. The transport nurses were awesome. We took a wild ride in the ambulance from NFRMC to Shands. Its amazing that some people just won't move out of the way for an ambulance with lights and sirens and horns and a really sick infant in the back. Please, if you hear a siren, get the hell out of the way... it could save the life of someone you love. And for the love of God - HANG UP THE PHONE!
Once Ginny and I got to Shands, she was taken immediately to the NICU Level III. The nurse there gave me a cup of coffee and I sat in the waiting room for what seemed like an eternity. I was the only one there for a while. I felt really lonely and had quite a time trying to keep it together. Eventually my friend Matt made it there, and he was a real hero that night. He's also a doctor at Shands, and he was able to go in and get the doctors treating Ginny to come out and talk to me. I owe Matt big time.
The doctors at Shands are some of the best in the country. Add that to the list of reasons why I'm really glad I live in Gainesville. They diagnosed her with two major problems.
The first is her cardiac problem - Transposition of the Great Arteries (TGA). TGA is a congenital heart defect where the blood vessels that carry oxygenated blood between the heart, body, and lungs are switched around causing oxygenated blood to circulate in one closed loop between the heart and lungs, and un-oxygenated blood to continuously circulate through the body. For us engineering nerd types, its a cross-connection problem complicated by the fact that its inside a 9 pound human. You can check out a lot more information at www.americanheart.org/congenital. The cardiologists tell us that this is something that is serious, but it is fixable with surgery and considerable aftercare. They've been doing this type of surgery on infants for decades.
Ginny's other big problem is pulmonary hypertension. The blood pressure in her lungs is so high that it is restricting the blood flow through those vessels, making exchange of oxygen really hard for her. Right now they have her on a high frequency oscillating ventilator trying to get her enough oxygen and open up the blood vessels so that she can breathe with a lot less mechanical assistance. That oscillator is pushing air that is 75% oxygen (as of this afternoon), but we can't continue to do that much past seven days without risking serious damage to her little lungs. The doctors need that number to come down to 60% or below, or they may have to do a much more invasive and risky treatment called ECMO. If there is something you want to pray about - THIS IS IT.
Ginny is in a big room with lots of other really sick babies. She might be one of the sickest, even though she's one of the biggest. We are allowed to touch her, but not hold her, which is hard because we love her so much. She is very sensitive to light, noise, and any other commotion including changing her diaper or turning her head. If anything bothers her she lets us know by dropping her blood pressure and oxygen saturation levels and generally freaking out the nursing staff. Because she's so sensitive, we've really tried to refrain from touching her at all. We spend most of every day with her and watch patiently as she makes small incremental improvements. We are allowed to bring people in to see her one at a time and we don't mind if you come to visit, but we haven't figured out a way to get it into a workable schedule so there isn't a parade through the NICU. We'll figure that out in the next day or two and let you know.
Our good friend Rebecca Hammond has set up a schedule on the internet for those of you that might like to help us by bringing food so we can maximize our time with Ginny. http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=837bb21b-1aff-46a4-88a1-2b7b9d48bb8a
We really appreciate all the help that many of you have offered and hope that someday we will be able to pay it all forward. We'll try to keep this blog updated with Ginny's progress a couple times a day, and share with you some of the great things that the people at Shands are doing. We love you all, and Ginny can feel the love too...