Scare

Well, first off I need to apologise for taking so long to post on here again! We found out in December that I'm pregnant again, which is wonderful news and we're so excited, but I was practically dead to the world during the first trimester! So I'm way behind on everything that involves doing anything - yes, even if it is just sitting at the computer and typing - that's how bad I felt! It's a good thing I know how worth it these babies are!

Anyway, I have decided that I need to not only catch up with all of Avery's history, but I also need to keep on top of what's happening now. So this post is about stuff that happened this week.

For a couple of weeks Avery's been acting more tired and needy than usual - she's even taken to wanting to take a rest in the morning in addition to her regular nap in the afternoon. At nights she's been waking up quite a bit, so at first I thought that maybe she was getting those last 4 molars, but I haven't been able to see or feel any lumps or anything on her gums, so I was a little concerned about it because I know that tiredness and lethargy can be warning signs for shunt problems. But since that was the only thing that was different I tried not to make too big of a deal of it. Then at the beginning of this week she started losing her appetite as well, and was eating hardly anything at meal times. Again, this sometimes happens when she's teething because I suppose chewing just doesn't feel good on sore gums, but I still saw no physical evidence on her gums that there were any teeth trying to push through, and so it added to my concern a little. By Wednesday she hardly even wanted to drink her milk, which was weird, so again I was worried but tried not to make a big deal of it. By Thursday though things were pretty much the same - she was very tired, and rested in her bed in the morning and then took another extra long nap (about 3.5 hours) in the afternoon, and then that night, since she had once again hardly eaten anything all day, I decided to give her some pediasure before bed just to make sure that she wasn't going to bed hungry. Whenever she gets a cold her stomach gets sensitive to milk and so she's had pediasure lots of times before and she's always liked it and it's always gone down easily. So she drank most of it, and then I put her down to bed, and a couple of minutes later she started crying and by the time I went to check on her she was halfway out of bed (she sleeps in a twin bed now) and she had thrown up all over the foot of the bed and the floor. Gabe took her downstairs and got her cleaned up while I pulled out the carpet cleaner and got to work on the mess in her room, and by the time I had finished stripping the bed and cleaning the carpet, she had thrown up again all over her Daddy. Gabe took her upstairs to have a bath (the second one that day) and I got to work on the mess downstairs. Anyway, it wasn't long after that that she threw up again, although by this time of course there was really no food left in her stomach so she was just throwing up bile and mucus. So now we had a little girl who had been acting tired and lethargic for a few days, had lost her appetite, was throwing up, and was screaming that high-pitched little scream we hadn't heard since she was a brand new little newborn before her shunt was put in. So of course we were worried, since these are all possible symptoms of shunt malfunction. So I quickly packed up a bag with extra shirts for all of us and some towels and Avery's bedtime cuddly toys, and we headed off to the ER. She threw up again while the nurse was looking at her, so they took us straight threw to a room in the pediatric section of the ER.

I don't need to go into all the details of our visit in the ER, but they gave her some zofran for the vomitting, asked us a billion questions repeadtedly, took x-rays of her head and lungs to check for pnuemonia, took blood and put an IV in her arm, took urine with a catheter (her least favourite part) to check for a urinary tract infection and did CT scans to check the size of her ventricles. It was a long night. She finally stopped vomitting after the zofran, which was wonderful, because by that time she had thrown up probably 8 times or so, and was quite dehydrated. Her lungs were fine, and she didn't have a UTI, but her white blood count was more than double what it should have been, so they thought she must be fighting of an infection of some kind. So finally after midnight sometime they were saying that since they had ruled out a bunch of the obvious choices, it may well be a problem with her shunts, so they started getting ready to check us into the pediatric ward for the night. I sent Gabe home to sleep, and by 3:45 or so Avery and I were finally settled into our little room up on the 11th floor, and she had a new IV drip to try to replace some of the fluids she had lost. She had managed to get a little sleep down in the ER, but not much, so she fell asleep very quickly, and I got some sleep on the couch next to her bed. At about 7:30am a nurse came in to take some more blood, and Avery woke up very sweetly and watched her stick the needle in her arm and take the blood, but she didn't cry at all, sweet thing that she is. The doctor from neurology (A lady I haven't met before) came up to see her and said that since her ventricles didn't look enlarged, she could still look up with her eyes, and she was acting a little more like herself that morning, she didn't feel a need to tap her shunt to check for an infection or anything, so that was fine. In my sleep-deprived haze (magnified by the fact that I'm extra tired because of this pregnancy!), I didn't think to ask her to check her shunt setting, since it had inexplicably changed its setting once before. That didn't occur to me til the following morning. Anyway, after that breakfast came and Avery had 2 bites of rice krispies and a sip of grape juice before she decided she was done. The group of pediatric doctors came in and said that her white blood count had dropped back down, so they didn't know what was wrong with her, but it looked like she was getting better, so they'd send us home. They said she was dehydrated and that on its own can cause vomitting, etc, although of course she wasn't dehydrated before she started vomitting, but what do I know??! One of the doctors came back a while later and said that she wanted to just keep her in til after lunch to make sure she was eating and keeping food down, but then not long after that the nurses came in to discharge her and we were home by 11:30am with a diagnosis of "vomitting" and instructions to give her a normal diet and keep her hydrated. I bathed her and tried to give her some lunch, but all she ate was a handful of goldfish and a sip of water, and then she was too tired to fall asleep, so I took her for a drive and she was asleep before we reached the end of our road. She slept for two hours in the car (I got some chili and a baked potato from Wendy's and ate it in my driveway, and then I fell asleep in the front seat while Avery slept! Everybody needs to sleep in their driveway once, right??) I woke her up a little after 4pm because I wanted her to be able to go to bed at her regular bedtime of 7pm. We drove to Kroger to buy some food I thought she might like, and I also got her some mineral oil because the pediatric doctor had recommended it for her constipation (we're trying to avoid meds for that), since she hadn't pooped since Wednesday and the dehyration was probably making it worse, and severe constipation can cause temporary shunt drainage problems, although Avery's neurosurgeon doesn't agree with that. On the way home Avery vomitted AGAIN - a lot. I called Gabe and he said to call her PCP, which I tried to do, but they had just closed (it was just after 4:30pm), so I called to doctor on call and she said it was probably a stomach virus so don't give her food but make sure she drinks lots of fluids. So we went home again, got her cleaned up, and then headed back to Kroger to buy some pedialyte. I managed to get hold of the PA who had looked after us in the ER (she just happened to be my friend's sister!), and she said that yes, it probably was a stomach virus, and said to call her back later if she was still vomitting and she'd get her a prescription for zofran. Avery wasn't having anything to do with the fluids we were trying to offer her though, and whenever we asked her where she hurt, she pointed to her eyes, so she must have had a killer headache. Again, kind of scary when your shunted child has a headache. ANYWAY! Sorry, I know this is taking a long time. Avery went to bed at 7 pm, and she slept all night til 7:30am on Saturday morning, and then she came into our bed and fell asleep again at 8am and slept til 9:30 or so, and then she got up and drank some pedialyte and sat on my lap on the couch and watched cartoons for about 40 minutes. She didn't want to get off my lap at all, and she just sat there very quietly and watched TV. Then she said she was tired and she went back to bed for another 3.5 hours, during which time her bedroom door was open and we moved our brand new king size bed upstairs into our room, which involved lots of noise, but she slept right through it, which is not like her. While she slept I managed to get hold of her neurosurgeon, since we were still very worried about her because she was sounding more and more like a little boy we had read about a few weeks before. Very sad story. (That is a wonderful sight by the way, I highly recommend becoming a member and making good use of the forums and information - it's so good to be connected to people who can help you through common experiences) By the time she woke up she had slept for 18 out of the past 24 hours. Her neurosurgeon was worried about her, and said that if she didn't show any improvement that day to take her to the ER again and have them do another CT scan to see if there had been any change in her ventricles since Thursday. If we didn't go to the ER that day, then we should take her in to see him at the hospital the following morning and he would check her shunt setting. Saturday afternoon, we ran out for about 30 minutes to buy some sheets for our bed, and Avery slouched in her stroller the whole time as though she didn't even have enough energy to sit up properly. After we got home her tummy was botering her, and she kept on straining as though she really needed to poop, so I kept on putting her on the potty, and she kept on pushing but nothing came out and she was getting really upset. Finally we put her on the potty again and she pushed and screamed and finally she managed to push out a couple of marble sized pieces and then a whole bunch of diarrhea, and after that she actually felt a lot better. She was still very tired, but she was acting a lot more like herself. There was no throwing up on Saturday at all, and we started feeling a little less worried. We still took her to see the neurosurgeon on Sunday morning though, and he checked her shunt and it hadn't changed, so then we really did feel much better. Sunday morning she started crawling around again and playing, and was generally much happier and more comfortable, although she still suggested that her head hurt when we asked her. She ate some little bits of bland food that day and had a few sips of water and/or pedialyte everynow and then. That night she threw up again though, so on Monday morning I took her to see her PCP and he diagnosed her with a gastrointestinal virus, and said that it would probably stick around til the end of the week. So yay for gastrointestinal viruses!!!! I would take one of those over a shunt malfunction ANY day of the week!!!

Blessedly, Avery does not get sick very often, besides the odd unavoidable cold. I don't know how I would cope if she got sick more often than she does, because the problem with all the signs of shunt malfunction is that they are also all symptoms of other "normal" sicknesses, so I think I'll always be worried that there's something serious wrong every time she gets sick! While I am not wishing away her toddler-hood, I cannot wait until she can more clearly tell us where she's hurting and what kind of pain it is, because that will make it so much easier to know whether or not we should be really worried! My goodness, I feel for all those parents of children who have to go through multiple shunt revisions, etc, because I cannot imagine how I would sope with the stress and worry of that. Thankfully, this time it is just a stomach virus. I hope and pray that we won't have to go throught the trauma of shunt problems, and that if/when she does need a revision or replacement, we will be able to catch it before it does any damage. May that be years and years down the line.

While we were still in the ER, they did some x-rays, and the technician took her puppy and did an x-ray of it too :) I thought it was cute :)

Avery's first walker

Here's Avery wearing her first pair of AFOs using her first ever walker! It wasn't actually her walker - we were borrowing it from her PT while we were waiting for her own walker to arrive, which was a posterior walker. She was about 20 months old in this video.

Dandy Walker and Neurosurgeon problems

Well, I haven't posted for a little while, but I'm too tired to write a proper post, so I'm just going to copy an old post from my other blog about Avery's hydrocephalus and some issues we were having with her neurosurgeon from when she was about 6 months old. So here it is:

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.

Early Intervention

So I've decided to start a new thing - Flashback Fridays! Since I only started this blog last November when Avery was already 20 months old, there is a lot I haven't talked about. SO I'm going to try and remedy that and make an effort to tell her whole story in pieces. So while I probably won't be good enough to do this every Friday, I will try to me Flashback Fridays a fairly regular thing :)
Today I think I'll talk about how Avery got into the Early Intervention program.
During the 10 days following Avery's birth when she was still in the hospital, she was visited by seemingly countless doctors, specialists and therapists. One of these was a physical therapist named Angela-something. The day Avery was released was a bit of a chaotic and exciting blur because I got a call as I was in the hospital elevator with my Mother on our way up to see Avery, and they said that Avery was going to be released that day, and then there were about a billion people who needed to talk to me and/or make me sign something, one of whom was this physical therapist. I remember thinking it was a little ridiculous that Avery had been seen by a physical therapist, because how much could a newborn baby be expected to be capable of?? Anyway, she explained that Avery's muscle tone didn't seem quite right, and that she wasn't holding her body as well as she should be when she was picked up. Again, I thought this was silly at the time, but since having my son 2 months ago, I am now more aware of how weak and floppy Avery's sweet little body really was when she was born, because my son just seems to be so strong, especially his legs, and I know Avery's legs were never like that. So at the time, not knowing any better, I was skeptical, but listened to her anyway, and she told me that someone from Early Intervention would be contacting us to arrange coming out to our house to evaluate Avery's physical state and decide how much help, if any, she might need. So at the end of March 2006, when Avery was about 6 weeks old, Avery's "team" came out to see her, and established it would probably be beneficial for her if she got physical therapy. Her gross motor skills were the main reason for this, because as far as they could see during the evaluation, she was still working at pretty much a newborn level. Poor baby, she had such a thin little neck and overly heavy head, it was extremely frustrating for her to be on her tummy because although she was trying really hard, she could hardly move her head at all. Understandably. So they made a list of goals for her and target dates for when they hoped for her to achieve them. So this was how that looked-

1. 05/29/06 Lift her head for 15 seconds in midline while on tummy twice a day
2. 07/29/06 Roll in both directions (back->tummy, tummy->back)
3. 09/29/06 Sit unsupported (placed in sitting) 3 times a day for 1 minute each time
4. 01/29/06 Get out of sitting to both sides independently
5. 12/29/06 Get into sitting using arms to push up, to both sides twice a day
6. 01/29/07 Get onto hands and knees for 20 seconds three times a day
7. 03/29/07 Crawl 25 feet 3 times a day

Avery started having twice monthly visits from her physical therapist. I don't remember the first girl's name, but after a couple of months we were given a new PT, Lisa, who is still Avery's physical therapist today, although she works at the hospital these days and not for Early Intervention. We love her. After a few months, once Avery was old enough to be awake and active for longer periods of time, we started having the PT sessions every week. Sometimes she loved it and was cooperative, and other times she hated it, but Lisa has always been really great at getting the most out of her, and Avery just loves her. Of the goals listed above, Avery reached the first couple not too far behind schedule, although I remember rolling was not a fun thing for her to learn. #6 took a long time...in fact, although Avery was able to stay sitting for 30 seconds or so if placed in that position well before she was a year old, she wasn't able to get into the sitting postion by herself until she started crawling at about 14 months, and even then it was by pushing back from crawling into a W position. She still has a strong preference for that position, which is not good for her. She can now sit cross-legged or with her legs straight in front of her, but she doesn't like it, and her back is still quite curved under in those positions, giving her quite poor posture.

Avery's First Two Days in The World

It wasn't until about 7pm that night that we were allowed to go upstairs to the NICU to see our little girl. With a lot of help I was finally able to get out of bed and into a wheelchair and my sweet husband wheeled me up to the 9th floor, IV in tow, and we pushed the button and waited for them to let us in. She was beautiful.

As you can see, she had all kinds of moniters and devices strapped up to her, but she was strong enough that she didn't need to be enclosed in an incubater, and we were able to touch her. As you can see from the next picture, she was also strong enough to kick and scream and let us know that she wasn't happy in this frightening new world she had been forced into!

Since I was still rather drugged and dazed after the c-section, my memory isn't great when it comes to the order of things in those first few days, but I think it was that night that the neurosurgeon came to our room to talk to us about the surgery Avery would be undergoing. She was scheduled to have her shunt placed at about 7:30am on Thursday morning. Poor baby, what a welcome to the world!

For those of you who may not know much about hydrocephalus or what a shunt is, let me explain it the way I understand it. Congenital hydrocephalus can be caused by many different things - in Avery's case it appears that she had a cyst in her fourth ventricle and this was what caused the blockage which prevented the cerebrospinal fluid (CSF) from draining properly from her brain. This cause of hydrocephalus is called the Dandy Walker Varient. Without any treatment, the pressure on her brain would have continued to build up, and her brain tissue would have been more and more squashed against her skull causing extensive damage, and as her skull began to harden and fuse together after birth, the danger would have been even greater. Basically, if left untreated, this condition would have killed my daughter and/or left her with no quality of life to speak of. Even fifty years ago this would have been her prognosis, and we would have lost our first child. In the past 50 years or so though, medical advances have created a chance for these precious babies to not only survive, but also to thrive. Less than 48 hous after my sweet girl was born into the world, she would be undergoing surgery to have a Ventriculoperitoneal shunt (or VP shunt) placed in her brain, which was designed to relieve the intracranial pressure and allow the CSF to drain into her abdominal cavity where it would be absorbed by her body. The doctor explained that the site which had been chosen for her shunt was just behind her right ear. A hole would be bored into her skull to allow the tube to be inserted and pushed through her brain tissue until it reached the swollen ventricles, then the shunt valve would be secured under her scalp and the tube would continue down under her scalp, down the side of her neck, over her collar bone and chest and into her abdomen. The hardware would all be internal, and the only incisions would be the large incision on her scalp and a small incision on her tummy.

Of course, preparing for surgery of any kind is always scary, but this was terrifying. I had to push from my mind all the possible terrible things that could possibly happen, and put my faith in God and the hands that would be performing the surgery, and that kept me sane.

The plan was to not give Avery any nourishment until after her surgery, but by the time we got up to see her on Wednesday morning her nurse said that she had just been so hungry that she had got doctor's permission to prepare a little formula for her, and I was able to hold my little girl for the first time and give her her first bottle. They needed to moniter how mush she drank, and since I hadn't been able to pump more than a couple of drops of breastmilk yet, I was fine with her having formula.

I was just in heaven being able to hold her for the first time! The pillow on my lap helped to protect my incision a little, but it still hurt quite a bit to hold her, but I didn't tell anyone because I didn't want anyone to take her away!! She was more than worth the discomfort! I couldn't keep my eyes off her!