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.