Surgery - Day 1

Florence's surgery was April 9, 2008. We did pre-op labs the day before which basically included a history and a blood draw. Then we showed up around 11:30 on April 9 to begin our process. After checking in, we met with the anesthesiologist and the neurosurgeon. Our surgery was scheduled for 1:30, but they wound up not even taking her back until about this time. This made our wait difficult since she had not eaten since 9:30 that morning. She did sleep a little while waiting, but also fussed at us when we didn't offer anything to eat. My husband, Tony, was fabulous with her, rocking her to sleep. When it was time to go back, around 1:30, we carried her to the operating room doors, and at that point, they took her from us. She was actually smiling and happy and went willingly with them. Tony and I walked the other way to the waiting room. I cried a little, but actually felt pretty at peace about the whole thing. We were able to kill some time trying to figure out where I could pump and also find some lunch. They came to tell us at 3:00 that they were beginning the surgery. Our nurse told us that she would come to update us at 4:00, but not to panic if she didn't. After lunch, Tony did some work on his laptop while I listened to music and read through a prayer book my sister had made especially for me and this day. I even managed to take a small nap. We watched 4:00 come and go, but I told myself that they were probably just finishing up and figured they'd be able to pass that news on shortly. Sure enough, but 5:00, both Dr. Joganic (ps) and Dr. Moss (ns) came out and told us she was finished. They escorted me back to her room while Tony packed up our stuff. She was taken to the PICU where she would do her recovery. Here we were introduced to some of the daytime staff and nurses. I watched from the door while they got her connected to everything. She looked positively normal except for being asleep with a green turban wrapped around her head. After removing the turban, we could see her incision with about 50 staples from ear to ear. She also had the most round smooth forehead - the beak was gone. There was almost no swelling at this point, and when she woke up you could see her beautiful eyes. She didn't seem to be in much pain, but they were keeping the morphine pretty steady for that first night. After she woke up, we were able to feed her some pedialyte from a bottle - a miracle since the previous week she had been refusing the bottle. I did try and nurse her by leaning into the bed; however, it was difficult for her to get a good latch and it was extremely hard on my back to lean over her. So I pumped milk for her and as long as she was "drugged", she seemed content to get her nourishment this way. My sister Eileen, who happens to be a PICU nurse at Phoenix Children's came by to make sure that I was comfortably settled in. She didn't really need to worry - all the nurses there were doing a fantastic job - but it was wonderful to have her there to make sure I had everything I needed and that I felt comfortable asking for whatever I needed. We felt greatly relieved to be on the other side of the surgery, even though we knew we had a long road ahead of us, we thought the worst was over. Everything was so good, Tony actually left to take Charlie to karate that evening, though he did come back and check on me later. Our room had a pullout couch where I would spend the night and the Family Center of the hospital had showers and a kitchen area where we could get coffee or use the fridge, a microwave, etc. We had a phone, a TV with a DVD/VCR player and even a CD player. We were set up pretty well and ready to face the first night.

Florence - metopic diagnosis

We had noticed that Florence had sort of "pinched" temples, but my sister (for whom she is named, actually) also had this characteristic, so we didn't think anything of it. It was at a Dr. visit for my other daughter (strep, bummer) that the Doctor asked if we had had Florence's head evaluated. At first I thought she was talking about the cradle cap, but she clarified it was the shape of her head and the "beak" that was forming down the middle of her forehead. The two pediatricians we saw didn't think it looked that serious, but they did want that confirmed by a neurosurgeon. I did a little research on the internet, but resolved not to worry until someone told me to. I went to the see the neurosurgeon on March 5, expecting to hear that we would monitor her head shape, but that we wouldn't do anything.

Unfortunately, he walked in and immediately knew that he wanted to recommend surgery. He explained the procedure to me, but told me it was still sort of optional. He wanted to get a CT scan to confirm there was no brain involvement and wanted me to meet with a plastic surgeon as well. He warned me about some of what I would find on the internet, explaining that the endoscopic procedure was available for metopic babies, but that he had found that the old-fashioned version had better results with a lower likelihood of another surgery.

He wanted me to get the CT and come back with my husband to discuss any questions. We did that and met with the Plastic Surgeon as well, both at Phoenix Children's Hospital. Once they looked at her scan, they noticed that the front sutures were fused together and were not allowing the brain to grow correctly in the front. It was also forcing the brain to grow backwards and they felt the back sutures were farther apart than normal. We decided that surgery was no longer optional. More research, more web searching...the surgery was scheduled for April 9. It is tough to find any pictures that show her ridge on her forehead, but it was there from the beginning. It's easy to see from the top how she had something of an eggshaped head.

Florence Kathleen - the beginning

Florence Kathleen, my fourth child, was born on November 26, 2007. All three of my other children had arrived a week or so late, having been induced by the doctor. Florence, already trying to set herself apart from the others, arrived a few days early in the middle of the night. Fortunately my mom was still in town from the Thanksgiving holidays and was able to come and stay with my other children while my husband drove me in. In true "rush to the hospital" style, he got pulled over by the cops for running a "no right turn on red" light, but after seeing I was truly in labor, he let us go on. She was a tiny thing, 6 lbs 12 oz., but healthy. She did, while we were in the hospital, have to be under the bilirubin lights, but otherwise she was nursing well and a healthy baby. We came home after two days and she slid right into the family as if she'd always been there.

Florence's new page

I'm creating this page as a place to display Florence's pictures from her surgery. Her full story will follow soon!