Clean bill of health

Here she is with her big brother Charlie. We went to the Doctor yesterday, two weeks plus a day after the surgery. There is still a little swelling to go down, but otherwise, we are starting to really see what she is going to look like for the rest of her life. They took out her 52 staples and gave her a clean bill of health. She cried while they removed the staples, but was fine right after. Here are some close up pics of her staples, and her with her nurses Mary and Joyce.
We've been given the ok for summer travel and said that she is out of the woods unless I drop her on her head or something. She is a happy baby with lots of laughing and smiling, and we are so happy to be this far out from the surgery. Here she is with Dr. Moss, her neurosurgeon.

13 days

Florence is still doing really well. It's been one week since our ER trip, and she's run no fever or showed any signs of anything being wrong. Friday evening, we went to my sister's for a birthday party and all her nurse friends were there. They kept commenting on how pink she looked (as opposed to pale and anemic) and how good her incision looked. That made me feel better as I'm still a little inclined to believe the worst about anything. Her swelling continues to go down and while she still has some bruising on her head, her eyes look normal. She has started doing this funny thing with her mouth where she sucks in her bottom lip when she smiles. This little trick has showed up about the same time as her recovery, but the timing is most likely coincidental. Anyhow, it makes her smile sweet and shy, especially with her eyes being still a little heavy lidded. She is good natured most of the time, though her temper continues to rear its ugly head in the evening. We've been receiving meals from our Marriage Encounter group which means that I only have to feed the brood rather than try to prepare a meal during the "whine and dine" hour. My neighbor and her daughter come over often to make sure I get a break from holding her all the time - I'm still not inclined to let her fuss it out - she is going to be SO rotten when this is over. My mom left Saturday so I'm back to doing my own chores and entertaining the toddler during the day. I'm so grateful that she was willing and able to come as long as she did, not everyone has that. We are incredibly blessed with so many people coming to help us out, really.

We're starting to venture out of the house a bit - going to the b'day party, going to church, today we took Alex to the park with his cousins and my sister. She's doing great and probably happy to get a change of scenery too. We go on Thursday to take out the staples - I'll feel good to get reassurance from the doctor that everything is as it should be.

9 days later

Things are improving slowly but surely. Her eyes are really starting to look open now and I'm sort of pushing her back into her old schedule. She is sleeping really well at night. She is a terrible napper, but she was that way before the surgery. She hasn't been running a fever since we came home from the hospital the second time so that's good. She also hasn't seemed to need the Tylenol either, though we're not deliberately denying it. I'm beginning to see my beautiful baby girl again, though there is no denying that even once the swelling is completely gone, she will look different. That is what we paid the big bucks for. I look back at the before pictures and I feel a little sad at the cutie-patootie we left behind.

One week mark

I missed a few days because she had to go back to the hospital. She began running a fever Monday morning and they sent us to the ER. When we got there, the blood tests showed that her white blood cell count was high and her red blood count was really low. They checked us back into the PICU and gave her a transfusion and IV antibiotics. Fortunately they were able to find some of the donor directed blood left over from last week. Now, she has my sister's blood in her - they are forever linked. Even though they ran many tests, they never found a reason for her elevated blood levels and after one night and the full day Tuesday, they discharged us again with instructions to watch her closely and come back if we felt like she needed to. But so far, she has no more fever and is doing very well. We are still trying to get back to a normal schedule (she was up a few extra times during the night), but she is eating much better and I have confidence we are really on the mend now. My mom is still here caring for the other kids, a real Godsend. We have until Saturday to rest and recover before she goes home. Her eyes are both open now, though there is still some swelling and bruising . Her scar is healing nicely and we will go to get staples out next week. I'll post pictures soon - our internet is out and I'm borrowing a neighbor's computer just to update everyone.

Day 5 - back to normal?

I've heard so much about babies taking a long time to readjust but Florence is really doing so well. The only thing is that whenever she gets really fussy, we have to wonder if she is in pain. Her eating is not quite back to normal, but she is doing pretty well. Her daytime sleeping is fitful, but truthfully, she was never a good napper. Last night went pretty well. As long as we keep her Tylenol current, she really doesn't seem to complain much. She likes to play with her noisy toys - the ones that make crinkly or squeaky sounds. The swelling is continuing to go down. The bottom of her face, from the nose down, looks almost normal. Tonight, her left eye is opening up a crack. When we noticed and got all excited, she actually laughed at us. As I sit here typing, she is talking sweetly to her stuffed octopus. It's so good to see her returning to normal. We go back to the doctor a week from Tuesday to get our staples out. Hopefully by then all the swelling will be gone.

Day 4 - Going Home

We survived the night. Our 6 month old roommate moved out at some point during the night, and because they needed the space, they were in there cleaning at 6:00 a.m. Yuck. Florence had a good night, waking up only to eat and doing well. I'm buckling down for another day and night in the semi-private room. The nurse brought us a music playing mobile for Florence. She couldn't see the twirling birds because her eyes are still closed, but the music was sweet and we both appreciated it. She even smiled at me a few times. I called my mom to bring me a few things, and Tony brought them to us. He sat with Florence while I ran to take a shower. When I came back, Dr. Moss had come by and said that Florence looked so good, we could go home today if we wanted. He said it was up to me and how comfortable I felt about cleaning her incision and the fact that her eyes weren't open, but he didn't have to ask me twice. Of course I was nervous, but really, I thought we'd be fine and we lived close enough to come back if we absolutely had to. So they cleaned her incision for us one last time, removed her central line and all the other monitors and sent us on our way.

I called my mom at home to get her to explain to the kids what she was going to look like. When we got there, I offered them one chance to wash their hands really well and gently touch her staples in case they were curious, but they declined. They did wonder if they had ever had such a surgery or staples in their head. It felt so good to be home and absolutely amazing to sleep in my own bed!!!

Surgery - Day 3

Friday morning. Just when I think her head couldn't possibly get any bigger. We got visits from our neighbor Tricia again as well as Aunt Eileen. The doctor says that we're well enough to move to the regular floor from the PICU as soon as she has two more doses of lasix (sp?) which they are giving to help reduce the swelling. We're sad to be leaving the personal care and private rooms of the ICU, but relieved that she is doing well enough to no longer need that kind of care. Her eyes are still swollen shut, but she is eating well and just getting Tylenol for pain control. They removed her catheter and her arterial line (in her wrist) today. That left the central line and the O2 monitor on her toe. Oh, and all the stickies that are monitoring her breathing and heart rate. Those were such a pain, beeping the machine every time I picked her up. We didn't move until around 8:00 that night. We moved into a semi-private room with just another 6 month old baby ( no parents with her) and we were so tired. The chair pulled out into a "bed" and that's where I closed my eyes...calling it sleeping would be pushing it. But Florence is doing fantastic.

Surgery - Day 2

We had a decent night. I gave up trying to nurse her and just pumped bottles for her. She did pretty well - she was too drugged to try and resist. Whenever she got too fussy, we gave her half a dose of morphine and she would quiet right down. We spent the day trying to eat - she pretty much gave up on the bottle by about lunchtime, but once the nurses told me I could hold her, I figured I could nurse her again - and she was happy to do that. Our neighbor came by to visit, followed by her Aunt Ginny. At this point, she was really beginning to swell. I had seen many pictures of other children so I was aware of the swelling that was going to come, but since I didn't know what these children looked like beforehand, there was no preparation for how I lost her in all of that. I almost felt a little relief when she cried because it was the only part of her I really recognized. She slept alot and we started using Tylenol for pain relief. Her last dose of morphine was at noon this day.

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's Baptism

Everything is moving so quickly between our diagnosis and the surgery. We've hardly had time to process everything. I'm having a difficult time visualizing ourselves on the other side of the surgery. At times, we are moving along normally and having a good day, but there is always something dark looming over my shoulder. Then I remember, "oh, yes" the baby is having surgery. Sometimes, I try to remember all my blessings and try not to worry, but then I remember that this is pretty significant surgery, and worth worrying about. I have found the most wonderful website: http://www.craniokids.org/ that has helped me feel like I'm not alone and to see what I'm facing both with the surgery and the recovery.

We had Florence baptized right after Easter. My sister Kathleen and her family came into town to serve as Godparents. I love the way they baptize at St. Bridgets, but I was especially glad to get it done before her surgery. They dunk the totally naked baby into a pool of water and then lift her high in the air, all while people are singing. It's very beautiful.

We also had the rite of anointing done the Sunday before her surgery. This, along with the baptism, made me feel she was extra protected for her surgery.

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!