Thursday, August 31, 2006

Pictures

Family Picture, August 2006.
Say Cheese!!

Avery; the cutest little frog in the whole wide world!
"I may be messy, but I did it myself and I'm so proud!"
I'm so adorable

Wednesday, August 30, 2006

Dandy Walker

I don't think I mentioned before that Avery's neurosurgeon thinks that the cause of her hydrocephalus is something called Dandy Walker Syndrome although I don't think that is known for sure yet. The more I read on it myself, the more I think that she probably doesn't have it. I don't know, from what I've read it sounds as though Dandy Walker is usually associated with other defects and malformations with the face, heart, spine, fingers, etc etc, and Avery doesn't seem to have anything else wrong with her. The only thing that may or not be associated with something like that would be her eye thing, if she does turn out to have Duanes syndrome or something. But other than that... And also, it sounds like Dandy walker usually causes an partial or complete absence of the cerebellar vermis, which is that area between the two hemispheres of the brain, and unless I'm mistaken because I'm not a brain expert, her MRIs made it look like there was nothing wrong there - I'm sure I saw a clear divide between, and I've checked a couple of times. Am I just clinging to foolish hopes? I don't think so, but maybe I am. See, it's just that the presence of Dandy Walker would be another thing that would decrease her chances of developing normally, but as I've said before, she seems to be so normal!!! She's pretty much on track with everything the books say she should be doing. And I do a lot of reading about that sort of thing.
That's actually been another thing that's bothered me with her neurosurgeon. When we've questioned the care she's getting, they say, "Well, it's not an exact science you see, and we're pretty much going on how you say she's doing, and if you say she's doing fine then that means we're doing our job", and sometimes when I think about that it really bothers me because here I am, totally inexperienced when it comes to babies, and while I am doing everything I can to learn everything I need to know, and am reading everything I can get my hands on, I am not the one with all the years of training.... they are. Shouldn't they be capable of keeping a better track of her progress and the reliability and effectiveness of her shunt? I just have a really hard time trusting that they're doing what's best for her. When her neurosurgeon doesn't even take the time to look at her chart before he walks in the room to check whether she's a boy or a girl, that bothers me. And when we're constantly being asked, "Now, what was her shunt set at...?" because they don't know, that bothers me. And when, after being told that an MRI is very likely to change the setting in her kind of shunt, they try to cancel our follow up appointment after her MRI, that really bothers me. It was only because we had the hospital call the doctor's office and say "shouldn't she be coming in to have her shunt checked after her MRI" that they said, "Oh, well, okay, I guess she can come on in after she's done" that they actually saw her. And her setting had changed. At least, they think it had, he said "Well, I can't remember what it was set at before, but lets see how she does with it at this setting."
Do you see why I have so little confidence in Avery's neurosurgeon? This is why we took her to UVa for a second opinion. The doctor up at UVa was much nicer, and much more helpful and responsive to our questions and concerns. He said that with regards to what's actually been done for Avery, from what he can see he probably would have been doing the same things, so that made us feel a little better. But I think we'll take her up there again once she's had her second MRI in a couple of months to see if he's still in agreement with her current doctor.

Tuesday, August 22, 2006

Avery's eyes

So, this morning Avery had an appointment with an opthamologist (this spell checker doesn't know that word). Her left eye has a tendency to turn in, and when we saw the developmental neurologist a month or so ago, it seemed to be affecting her ability to track properly to the left. That particular problem seems to have solved itself since then and she's tracking and grabbing and turning really well in both directions, but her eye still turns inwards quite often, so the neurologist's office made an appointment for her to see an eye doctor to get it checked out. So, he says it's one of two things. It's either Duane's Syndrome (hopefully not) or Sixth Nerve Palsy, which he thinks is more likely and also more easily fixed. So right now he's not going to do anything because he wants to see first whether it will straighten out on its own, which it may well do. I was expecting to just have him tell me that she had a lazy eye though and put a patch on her, but oh well. All is and will be well.
I left the house at 7:30 this morning for Avery's appointment, and since Gabe didn't start work til 10:30 and he has a busy couple of days ahead of him, I left him sleeping in bed. Avery's appointment took longer than I thought it would, partly on account of me having to change her entire outfit as soon as we got there because of an explosive diaper, and partly due to having to wait 30mins for the eye drops to make her eyes dilate. That and it was all the way over in Salem! teehee! Next time we've got an appointment downtown instead. So anyway, I got back probably about 10 or 15 minutes after Gabe left for work, so I was thinking I wasn't going to be seeing him at all today because he's observing tonight down at the Rescue Squad again, and last time he didn't get home til probably about 1am. So that didn't make me feel good because, funnily enough, I like seeing my husband and I miss him if I have to go a whole day without seeing him! I'm sure it's going to happen more often over the next couple of years though, what with his EMT and Paramedic stuff getting under way, and then the PA course. So I should get used to the idea I suppose. Luckily though I did get to see him for a couple of minutes today, since he accidentally left behind some paperwork he needed to fax, and he didn't have any lunch, so I made him some lunch and took his papers to him at work. All the ladies oohed and ahhed over Avery, who was looking particularly cute in that adorable little white hat of hers! Her poor little eyes though were still dilated, so the world must have been so bright all day today! I tried to shield her from as much light as possible though. But Gabe was glad to see us, and I'm glad he got to see Avery today. Because at least with me, I'm sure he saw a little of me through sleepy eyes this morning as I was getting ready, and when he comes home he'll be getting into the same bed as me, but if I hadn't gone by to the bank today, he would have gone all day without seeing his beautiful little girl. So sad. I suppose some people are just built to withstand having to be away from their families for days or weeks on end, but not us. That would be so hard. For me, at least, and I'm hoping it would be hard for Gabe too!! Teehee, I'm positive it would.
It's my birthday this weekend - I'm going to be 24. How fun!

Friday, August 11, 2006

My baby girl






Well, since I last wrote, everything in my life has changed! We have a beautiful baby girl named Avery Marie, and she is the most amazing little girl in the world! I could never have imagined how much I would love this baby. I've never been a "baby person", but I love being a Mother, and I love Avery. She was born on Valentine's Day. Gabe is completely besotted with her too, and life is generally great!
Okay, before I carry on, I should really take a moment to update you with everything important that has happened since...whenever it was I last wrote in here. So. The rest of my pregnancy was smooth right up until the end when I had an ultrasound at the beginning of February and they told us that the baby had congenital hydrocephalus. This news hit us like a bombshell, since we had no idea that there was anything wrong at all....nobody ever wants to hear the words "...There is one thing..." This was on the Thursday at my regular ob-gyn clinic, and then we had all weekend to panic and hope and spend far too much time researching on the internet before we saw the pre-natal diagnostics doctor on the Monday. That was when it was confirmed that Avery had hydrocephalus, and they said that at 36 weeks, her head was already too big to fit through the birth canal so she would have to be delivered by c-section (another shock since I had been planning on going totally natural), and we were told all the worst possible scenarios as far as Avery's condition and development were concerned. The good news was that there appeared to be no other birth defects that are often associated with hydrocephalus (heart enlargement, spina bifida, other spinal defects, etc), and that the condition was not apparent when I had my 20 week scan. Needless to say, we spent a lot of time on our knees over the course of those next couple of weeks, praying that this baby would be given the chance to have a good life. We went through some genetic testing that day too, which revealed the good news that it will not be something that we should have to worry about with any future children, and we were also told that everything looked good as far as chromosones went, which meant that she didn't have downs syndrome or any other chromosonal defect. Of course, at the time, all this "good" news wasn't exactly soothing the turmoil inside me because all I knew was that the perfect little baby I had been looking forward to and falling in love with for the past 8 months was actually very sick. I called my mother the next day to tell her the news, and she arrived on a plane from England the day after that. They tested for lung maturity because of course we all wanted the baby to be born as soon as possible so that she could get the help she needed before it got any worse. They scheduled me for a c-section on February 15th, dependant on the test results, but early in the morning of February 14th, my water broke - Avery was ready to be born no matter what anybody said! So at 2:30pm that afternoon she was born, and just hearing her sweet litte cry and seeing her beautiful little face for the first time was the most overwhelmingly amazing feeling in the world. Gabe held her, and they brought her to me so that I could kiss her and marvel over how beautiful she was, and then they took her away. But as I lay in the recovery room feeling sleepy and numb from the drugs, I remember just feeling so ecstatic to know that my little girl was finally here, and that despite the hydrocephalus, she was able to breathe and squirm and kick and cry. I was such a bundle of relief and hope and joy that I could actually not stop myself from smiling and letting out the occasional sigh of happiness as the nurse went about her duties. Ah...even the memory of it as I write this makes me smile.
Avery went straight up to the NICU, and it seemed like an eternity before we were able to go up there to see her that evening. And she was beautiful and soft and smooth, and I could have sat there and stared at her all night if they had let me! Anyway, she had her shunt placed on the morning of February 16th, and she coped with the surgery very well, and then she was able to come home with us when she was 10 days old, which was, thankfully, a lot sooner than we had been told to anticipate. All in all, she is just...well, amazing.
She has been having physical therapy twice a month, and we took her up to UVa to get a second opinion because we haven't been happy with her neurosurgeon, but she generally looks and behaves like a normal, healthy baby, and I just feel so optimistic about her future. She is doing so, so well.
My mother was here for 2 months, which was a huge help, and then after she left we were here for just over a month before we took a long-awaited trip to England for the first time since we've been married. I worried about Avery with the flight and the pressure change, and the 4 week period away from her doctors, but she was perfect. Of course. But I will have to write about our England trip another time. I think this is a long enough entry as it is :)