Neuro-NICU reunion 2012

When Sadie was born she went to the NICU, obviously. But she went to a special section, treated by specially trained doctors and nurses. Sadie went to the Neuro-NICU. Phoenix Children's Hospital (at the time) has 1 of only 2 specially certified Neuro-NICUs in the nation. This is where she was cooled.

Because this is a special place for special babies, they have a reunion each year to see all the cooled babies and catch up with them. Most of them are perfectly normal and typically developing. Sadie was the 47th baby to be cooled at PCH, so we were invited to one of the first of these celebrations, and it was there that I realized that our family was different.

At first I thought we must be really unlucky because most of these children were all going to be just fine, maybe they'd have a small swallowing issue that they'd grow out of, or maybe they'd be at a higher risk of developing seizures when they get older, but none of them were like Sadie. And this was really hard for me that first year.

So the second year we just didn't go.

We keep in tough via Facebook (I love Facebook) with the neonatologist who was Sadie's doctor in the NICU, and she kind of heads up the Neuro-NICU, so I told her last year that I just didn't want to come see all those beautiful typically developing children and know that mine has all these developmental delays and physical disabilities. That was kind of a dark time in my life when Sadie still wasn't sleeping and she was still screaming most days and always in the car, and I wasn't in the mood to go be around people who were living the life I thought we were supposed to have too.

But this year I've gotten past a lot of that. Sadie is happy, she is doing amazing things, and we've really gotten a handle on routines and are pretty good at managing her out in public. She also has a perfectly healthy and typically developing baby brother who has, and is, providing a lot of healing for our family. So, we packed up and headed over there. We visited with Dr. Carballo, who was filled with joy to see all of her cooled babies, not just ours. We sat with a nice family who has a 9 month old who is doing well. Then we took this awesome picture and went home.

By attending this year I realized exactly the opposite of what I felt last year. We aren't unlucky because our child is disabled. Instead we are lucky that our child is alive. Those kids at those reunions are there because brain cooling helped reverse the effects of oxygen deprivation at birth, and they are doing very very well...but I can't help but think of the families who weren't helped by brain cooling, the ones whose babies didn't make it. Really, we should have been in that category and not invited to these reunions at all. So I held my head high at that celebration and I proudly told people how Dr. Carballo saved my child's life, and how lucky we are to be able to be invited to celebrate the Neuro-NICU every year, because Sadie is alive. And she has taught us more about living and brought more blessings into our lives than we ever could have imagined.

Sadie's second swallow study

This morning we had a swallow study. Our last swallow study was when we were in the hospital when Sadie got her NG tube last May. So, it's almost been a year.

We did a lot of waiting, and Sadie was so good. I was really proud of her. I scheduled it first thing in the morning because I figured it'd be easier to not feed her if she was sleeping! So, I didn't even wake her up, I just pulled her out of bed and put her in the car. We worried about getting dressed and stuff once we got there and checked in! (we had plenty of time)

All dressed up and ready to wait!

By the time they started the test, she had been awake for an hour and a half, and was plenty hungry. That just made the test go better.

Getting all set to swallow some barium!

I wasn't able to participate because I'm pregnant and it's all done with X-Ray, so I stood behind a wall and watched through a window. The cool part about doing that was that there was a computer monitor right in front of me with clear video of her swallowing. Last time we did this, I was feeding her and didn't get to see the video at all as it was behind me, so I was pretty excited about this.

My view from behind the prego wall.

They started with honey-thickness liquid. Sadie swallowed that perfectly.

Then they tried nectar-thickness liquid (which is a little thinner) and the first 2 or 3 swallows went down just fine, but by the third or fourth she had silently aspirated a tiny bit. Mind you, what I was told was that it went down just fine, then at the very end she aspirated, so it was likely from fatigue.

They knew they couldn't go any thinner, so they did the pudding consistency, which is basically like giving her a puree with a spoon. She also aspirated a little bit of this. Again, because her muscles were probably fatigued.

I took a picture of the computer monitor showing the test. It's kind of hard to tell what you're looking at, but that little black line I'm pointing to is the liquid she's swallowing. (I was told I couldn't take video of the monitor, but I should have anyway!!)

Finally, they tried giving her a cookie. She struggled with the cookie. I think it was just a little bit more dense than those puffs we give her and she doesn't quite get yet the whole chewing thing. I mean, she can do it if it's on accident, but I don't think she understands moving the food to her teeth for the purpose of chewing. They ended up having to give her a little liquid to help her swallow, and when that wasn't entirely successful, they swabbed her mouth with a cold lemon swab to encourage saliva and swallowing. Then she finally got it down.

So, what does all this mean? Nothing. It basically means we're right where we were a year ago. I don't know if that's good or bad, but I was hoping at least for some progress. I want Sadie to be independent of this tube someday, but she has to get better at swallowing first...a lot better!

The lady who did the test told me that if she were looking just at these test results she'd tell me that it's not safe to give Sadie any food by mouth. (sad) But looking at the whole child and the situation, knowing that we give her LOTS of food by mouth, she said she'd recommend doing just what we're doing. Professionally, she recommended giving 4 or 5 bites multiple times a day, and starting with tiny 1mL amounts of honey-thickness liquids multiple times a day. After all, she can't get better without any practice.

She also mentioned that it's a big deal that Sadie's really never been sick, and that she's never had pneumonia. She said some kids just have strong lungs, and some kids aspirate once and they're in the hospital. I guess we just got lucky on that one!

So that's that. Not really that exciting, but at least we know. She didn't recommend another swallow study for probably a year because based on Sadie's lack of progress in this last year, she doesn't anticipate fast progress really over the next. (sad again)

Practice practice practice Sadie!!

Sadie's hospital admission

A week ago today, we got called and told that there was an open bed at Phoenix Children's Hospital (PCH) for Sadie to come get her feeding tube. (I know, I should have updated before now, but it's been a CRAZY week!!) It's just an NG tube (meaning it goes in her nose down into her tummy), and putting it in literally takes 90 seconds, and we could even do it at home. But when first getting one, PCH likes to admit the child for 2-3 days in order to make sure they get on a good feeding plan, that parents are comfortable with re-insertion and care, and so any additional tests can be done. For example, Sadie was going to have X-rays taken to watch food travel into her tummy to make sure there was nothing blocking it, and another X-ray taken to watch her swallow to see if she is aspirating liquid. They can schedule these as outpatient procedures, but the dr. told us that if we're there anyway, it's easier to just do them.

Last Sunday I did a crazy amount of stuff around the house before leaving for the hospital. I made blackberry jam, paid bills, made 2 loaves of bread, and wrote a letter to the insurance company about Sadie's chillout chair (that's another story for another time), and we got to the hospital around 3:30 in the afternoon. We were told to go through the emergency room, because it was a Sunday, but just tell them we were a direct admit and already were scheduled. We did that and got to our room without much hassle.

Immediate we were seen by doctors and nurses and admit people asking us a million questions, that I tried my best to answer, even though Sadie was screaming. I was by myself with her because Brian knew he'd have to bring us dinner, so instead of coming and going and coming and going, he just stayed home and came once at dinner time. The doctor who saw us didn't really understand why we were there, and told me so. I felt foolish after talking to him and I started second guessing myself. Should we have come? Is this the right thing to do? Is this going to make our lives much more complicated? Are we even supposed to be here? But we finally got it straightened out, and Sadie finally fell asleep, and they finally brought us a bed we could both sleep in together (instead of a crib), and it got better. A little.

The worst part of the whole thing was that we had a roommate. Those rooms are so small as it is, but then they stick two patients in there, and it's miserable. And Sadie tends to scream/cry for the majority of the day, so I felt like I needed to apologize in advance. The other patient was also a baby, but she was only 8 mos old. Her name was Rhyan and she also was having trouble eating and gaining weight. She was on the same medications as Sadie, and got her tube inserted that afternoon soon after we got there. The only difference was that Rhyan was completely normal in every other way. They had been going through the whole ordeal while in the hospital for the last week, while we'd been doing most of it at home over the last couple of months. Rhyan's mom was too cheery and too nice and wanted to give me advice and tell me about her experience more than I wanted. It's hard to be in the hospital, and my baby doesn't sleep enough as it is. So, as you can imagine, I turn into mommy-grumpy-pants and I don't want to be friends with anyone, which is the complete opposite of Rhyan's mom.

Sadie got her tube about 6:30 that evening, and that night she started her first night feed. It was like we had to learn a new language. We do everything in ounces at home, but at the hospital they do it in mLs. So, we had to learn that 30mLs is an ounce, and there's a lot of math involved as well in setting up the machine that delivers her feed because we have to figure out how long we want it to take and multiple and divide by the amount we're giving her (in mLs) and then adjust the settings accordingly. Who says you don't use math in real life?

That first night was a little tough, more on me than Sadie. We have a policy at home that once Sadie's asleep you DON'T wake her up. She doesn't get a diaper change in the middle of the night or anything. I tried to explain that to the nurses, but they insisted on coming in every 4 hours to take her temperature. Sadie didn't fall asleep until 11:30, then her machine kept having an error and beeping, then the lady would come in and play with stuff or take her temperature, and I was so afraid of her waking up...but she never did. At 5:30, though, there was light coming in through the window, so when the nurse lifted the blanket off her head to check her temperature, Sadie saw the light and thought it was time to wake up. I had had a HORRIBLE night's sleep because of all the beeping and worrying she was going to wake up everytime she stirred, so I was not ready to be up at 5:30. It took me a half hour to get her back to sleep, and I was hoping I'd get at least another hour of sleep out of it. But the nurse came in at 6:15ish and told me that when babies are admitted for poor weight gain, or failure to thrive (I hate that label) that they're supposed to be weighed every morning at 6:00am on the same scale. I told her if they want her to thrive, they need to let her sleep and if we wake her up right now, strip her down, and stick her on a scale, there is no way she's going to go back to sleep. And I probably wasn't real nice about it, so she backed off. When Sadie woke up around 7:30, they weighed her then and it was fine.

Most of that day we sat around waiting. Sadie's swallow study was scheduled for 3:00, and I wasn't allowed to give her food after noon. One of my worries was that if she had been "eating" all night, she wouldn't be hungry in the morning, and breakfast was always the one meal I could count on her eating plenty. But she ate breakfast okay and that made me feel better. I didn't think it was a good idea to starve her after noon, but I was told I didn't have a choice. They needed her tummy to empty to do the upper G.I. study (where they watched her eat and it go down into her stomach). My dad came to visit us for a few hours, and actually played with Sadie for a little while so I could sleep for a half hour or so. I was so tired I had a headache...which wasn't helping my grumpiness.

Luckily, they came to get us for the tests at 2:15. And Sadie loved the stroller ride through the hospital! She actually stopped crying for a little bit. They did the first test and saw that everything was going down just fine. But she was so upset about us holding her down and squirting stuff down her throat that the speech therapist and I had to blanket swing her to get her calmed down for the swallow test. After doing that, she was eager to swallow anything we put in her mouth, which was encouraging, because I wasn't sure if she understood hunger and associated it with eating/drinking. But she obviously does. They had her swallow different consistencies, starting with thin (like water), then nectar consistency (think whole milk), and finally honey (more like snot). Then they had me feed her what they called "double honey" on a spoon. We learned that she aspirates thin consistency and nectar consistency (this means some of the liquid is going into her airway instead of it all going down to her tummy), and she might aspirate honey consistency if she is given too much and she gets tired (just like when we do something hard and our muscles get tired, we don't do it as well after a while, that's how it is for Sadie swallowing, after a while her muscles get tired and she doesn't swallow as well). She made it very clear that we were not to give Sadie anything thinner than honey consistency. I asked the speech therapist why this was such a big deal since Sadie had never had fluid in her lungs or pneumonia or anything. She told me that Sadie's lungs were probably absorbing the trace amounts that she was aspirating, but over time this could cause her to develop lung disease. (yikes) After that we went back to our room and hooked Sadie up to the feeding machine and within 10 minutes she was much calmer. I even got her to fall asleep...for like 5 minutes until baby Rhyan started screaming (she was also teething).

That night Brian came and stayed with Sadie. I had an all day inservice for work and needed to go home, shower, and have a good night's sleep. He said she never fell asleep all night. 1. He's not Mommy, 2. she was in a strange place. The next day, he pushed the hospital to let them go home. Sadie needed to sleep, we needed to sleep, it was important that we all got back to normal. I was happy to hear when I was done for the day that I needed to go home, not back to the hospital.

Brian met with the speech therapist and was given a feeding plan for Sadie. We are only allowed to give her an ounce of food or drink (thickened to honey consistency) at a time to help her practice swallowing, but not get her too tired so that she ends up aspirating. The rest of her nutrition comes through the tube over the course of the day, then a slow drip all night. It kind of feels like we're going backward, but I understand that it's important to enforce good eating where everything works together and goes where it's supposed to. And hopefully as she gets stronger and more coordinated, she'll be able to take more at one time. The prediction is that this might take 2-3 years...which would lead us to a more permanent G-tube in her tummy sometime soon.

That night after they got home, our house was full of crap. Brian brought home a bag of stuff that included the pump, extra bags and formula, tubes and random stuff that comes with all that. Then we had 2 deliveries to our door of more stuff. We have over 300 packets of thickener, we have 4 cases of pediasure, we got an ENTIRE box of feeding bags that attach to the pump. We felt like Sadie all of the sudden became high maintenance... because she really did.

That night Sadie slept 13.5 hours. I had to wake her to go to therapy in the morning, otherwise who knows how long she would have slept. She was so tired. The nice thing about the tube is that she didn't even have to wake up to get medicine and to eat...although I didn't really realize that that first morning. We let her sleep as long as she needed to the next couple of nights to catch her up from the hospital, and to catch ourselves up as well. She seems to not be bothered by the tube. We've already had to re-insert it twice (once she threw it up, once it got clogged). She seems to be calmer throughout the day, and we now know that when she's having trouble sleeping it's definitely because her teeth hurt (another molar came through last night). I'm hoping that this will finally be "the thing" that she needs to be happy. It's possible that it hurt to drink and that's why she didn't want to do it. Even though it feels a little like we've taken a step backward, I hope that we are able at this point to start building a strong foundation physically and emotionally for eating so that eventually the tube is completely unnecessary. But for now, we will see it as a blessing and not a hindrance, because it is helping Sadie and all we want is what's best for her.

On this day in history...

One year ago this morning was the first time I was allowed to hold my brand new baby girl. She was 4 days old and had just completed 72 hours of brain cooling. She had a breathing tube in her mouth, an EEG wrapped around her head, and all sorts of wires and cords attached to her body.

I know that she knew it was me that had her, and I'd like to think that knowing that her mama was there loving her made her fight to hang on. She was so little and so helpless and I loved her so much more than I ever imagined. That day I felt more sadness and more excitement than I ever had in my life

Little did I know that the next 24 hours would be the hardest day of my life.

Today Sadie was a SuperModel

Today, Sadie and I went to PCH to take some publicity pictures. They are re-doing a lot of their marketing (I'm assuming because of the new building they just built), so they've spent the last couple of weeks taking pictures of kids with doctors and in different places in the hospital. We were originally supposed to be taking pictures in the cardio department with a doctor there, but, like with anything, plans changed.

So instead, we just stood there and looked pretty while they snapped away.

Sadie DESPERATELY needed a nap when we got there, and she fell asleep immediately. I actually had to wake her up to take pictures. And in typical Sadie fashion, she was happy and smiley as soon as she woke up.

Unfortunately, we probably won't get to see these pictures until the spring. But, I will make sure I show them to everyone! Or who knows, if you live in Phoenix, maybe you'll see us on a billboard or the side of a bus telling how great PCH is!

My first 10K

Once again, I'm behind...I ran a 10K on December 4th, almost 3 weeks ago. 10K is 6.2 miles and I had never run that far until that day. It was good for me, boosted my confidence.

It was a cold morning and I actually went in the bathroom and put my hands under the dryer to warm them up! And I did a lot of walking around, trying to stretch and stay warm. I was by myself, Brian promised that he and Sadie would meet me at the finish line. By the time the race started, it warmed up a little, but I still ran the whole way in pants and long sleeves.

The course was NOT flat, there were 2 hills and I had to run through gravel. One lady was running with a stoller and had to walk through the gravel. She and her husband ran with me a lot of the way, but they picked up the pace at the end and ended up way ahead of me. It was all I could do just to finish.

I wanted to stop so badly at the end, but in my head it was silly to quit when I could SEE the finish line! And as I was coming in, there were lots of people cheering me on, so that made me feel good. I think what helped the most though was that every K was marked, and it was an out and back course. So, I could keep track of how far I'd gone, and I could feel how close I was because I'd seen all this before.

Less than a month until I run the half marathon. I am nervous. I don't expect to run the whole thing, my goal is to run 10 miles before I have to walk. And I even kind of think that, depending on how I feel, if I can make it 10 miles, I can psyche myself into a couple more...maybe even 3 more! There's still plenty of time to donate, and in this season of giving, there's no better present you can give than hope to many children like Sadie at Phoenix Children's Hospital. Please consider giving something, no gift is too small.

I will try not to wait so long to tell you about my half marathon!!

Quarterback sneak

Last Friday, we attended a Phoenix Children's Hospital fundraising event. We're on a list now, so we get called for things like this all the time. This one sounded fun.



PCH is building a brand new tower as an addition to their hospital. It's 11 stories high and has basically changed the Phoenix skyline. It's beautiful...and we got to go inside it!



This event was put on by the Walton family (as in the owns WalMart family) and is traditionally open to PCH's biggest donors. This year it was to celebrate the hope PCH brings to so many families by lighting a Christmas Tree outside the new tower, as well as officially lighting the building. This new tower has these cool LED lights that change color, as well as this rainbow light on what must be the top floor. You can see it from the freeway and it's spectacular. We were actually lucky enough to see a test lighting one night last month as we were driving by on the freeway, so we already had an idea of how amazing it looked.



We were asked to come an hour early (I had no idea why at the time...I just figured it was to give a lot of extra time to make sure we were all there and knew what we were doing.) Then we were ushered way off to a trailer because the donors didn't know we were there, we were going to be a surprise. See, the plan was to light the Christmas Tree while this little girl (who sings like an adult) sang a song. Then each of these PCH patients was to walk up on stage and hang a special ornament on the tree. And, it pretty much went like that...but it wasn't as spectacular as it sounds. The best part was that a girl named Carolyn, who has a rare disease where her bone marrow degenerates, told her story of spending Christmas quarantined in the hospital one year and how her family and the hospital staff went out of their way to make Christmas special for her anyway. And as she told her story and as they lit the tree, you could see the current hospital building in the background, with kids and parents standing in the windows watching and all their lights flickering on and off. It was as if they were having their own lighting celebration and we were all invited...instead of the other way around.



Once everything was lit, and everyone was done talking, we got to go inside the new building (just the lobby)...which was most of the reason I wanted to be part of this event. It was beautiful and shiny and sparkly. All along the walls, there is a strip of mirror at toddler height. So fun. And the elevator bay reminded me of the cruise ship we went on for our honeymoon. You can tell they spent a lot of time really making it beautiful (why didn't I take any pictures of it?! I don't know...silly of me huh?)



We walked around and admired the Christmas Trees they had inside, then we left before our child became too horrible. Her routine had been interrupted and she didn't like that instead of letting her go to sleep, we bundled her up and put her in the car. She screamed the whole way there. In fact, when we got there, there was valet parking (another wonderful feature of PCH that I take advantage of) and they thought we were in the wrong place and that we were looking for the ER! They kept directing and redirecting us, when really we just needed to stop and GET. HER. OUT! All that to say, it was good that we had over an hour to wait when we got there, because Sadie needed a nap! And she got one!! She was so out we had to WAKE HER when it was time to go! But by the time her and daddy had walked up and hung the ornament, she had listened to that little girl with the big voice sing, and she had gone inside where everything was bright and shiny and visually stimulating, she was ready to be done and back asleep.



The whole night seemed a little haphazard and unorganized and people kept apologizing to us for making us wait all the way far away in a trailer, it all seemed a little strange. Then I got an email late Sunday afternoon. We weren't the only surprise that was planned. Kurt Warner (retired AZ Cardinals Quarterback and recent Dancing with the Stars participant) and his wife were also supposed to come out on stage with us. And they had requested to spend that hour-long wait with us in the trailer visiting and taking pictures. Their family has a special needs child (I guess he's an adult now though) and are big supporters of PCH. But apparently at the last minute they had to cancel, leaving everything feeling disjointed and planned wrong.



Although I understand now why we waited where we did and for how long, I am SUPER bummed about not meeting Kurt Warner. I may have been more excited to see him than any of the children in that room. He is definitely one of my heroes and it would have been a great honor to hang out with him and his wife, who are wonderful people (so I hear). And the picture we would have taken with him, would definitely have been something worth framing and hanging in the living room. Someday, Kurt Warner...some.day.

Sadie's fundraising story

I had a perfectly normal pregnancy, my birth was even pretty average...although long. But when my baby, Sadie, was born, she wasn't breathing. There was meconium covering her body and in her nail beds, it had obviously been there a long time. She had been sick, and we didn't know it.

She was immediately rushed to the hospital (we had a home birth), where an experienced doctor quickly discovered signs of brain damage. Sadie was transferred then to Phoenix Children's Hospital's NICU, one of only two Neuro-NICUs in the country. There, Sadie was put on brain cooling.

When babies are born and not breathing, brain damage can set in pretty quickly. But, if their body temperature can be cooled down to a hypothermic state, they've found that they can stop the damage from continuing, and even reverse it. But when Sadie wasn't showing improvement the way other babies have, the doctors did some more investigating.

Group B Strep was found in my placenta and the consensus was that the infection, although it didn't reach her, damaged her brain through contact with neuro-toxins. She had been very sick inside my belly and nobody knew. This is probably the stress that caused her to pass the meconium, which she must have aspirated, which was the cause of her not breathing when she was born.

What we were told at the hospital was very grim. We were told that brain cooling could not reverse Group B Strep damage. She couldn't suck, she was having trouble breathing independently, her eyes were barely open...and they told us she'd always be that way. A vegetable, they called her. So, we made the decision to unplug the breathing tube and see what happened. We were all prepared to say goodbye, all of us but Sadie, that is.

Fortunately, the damage to her brain that caused the breathing, swallowing, and alertness issues happened to be the hypoxic event (lack of oxygen), and in that respect, the brain cooling saved her life. When we unplugged her, she started to wake up, she continued to breathe on her own, and she started to swallow. Sadie was the 47th baby to be cooled in the Neuro-NICU at Phoenix Children's Hospital. And to this day, the doctors are amazed that she is still alive.

We were only in the NICU a week, but since we've been home, we've come up against a number of other obstacles. We fought to get into the PEMU (Pediatric Epilepsy Monitoring Unit) at Phoenix Children's Hospital because we believed Sadie was NOT having seizures, and refused to medicate our baby unneccessarily. We had an MRI when Sadie was 6 months old. And we visit a special needs clinic at the hospital where we see Dr. Wendy, Sadie's pediatrician. We've also needed and used the Emergency Room there. Phoenix Children's Hospital is an amazing place, full of wonderful and caring people.

Sadie is the most amazing screamy ball of cry that has ever happened to us. She has since been diagnosed with Cerebral Palsy, Cortical Visual Impairment, and Microcephaly, and she still carries the Epilepsy diagnosis even though, for now, she is seizure free. But she is alive, and she's the cutest little thing, full of spunk and spitfire. She is strong and determined. Even though coming home on a feeding tube, she learned how to breastfeed. She is now eating solid foods with fervor. And she knows what she wants, whether it be to nurse, to bounce, to sit, or to go for a walk in her stroller.

None of this would have been possible without Phoenix Children's Hospital (which I could barely find that first time, but now I can drive to with my eyes closed!), and our story is just one in thousands just like it. We are so grateful for everything they've done for us, we can only hope that the little we can do to help them raise money will help other families like ours in the future.

I am training (and it is NOT easy) to run 13.1 miles, a half marathon, to raise money for Phoenix Children's Hospital, and I'd really love for you to help by giving. Anything will be appreciated, every dollar is important. And to encourage you, I am holding a raffle for ONE MORE WEEK. On Sunday, November 21, I will be drawing a winner for a quilt, handmade by my mom, from the names of the donors to my fundraiser. For every $5 you give, you will receive one entry into the raffle (that means $25 is 5 entries, etc). Please consider helping, by donating to this wonderful hospital, where babies and children's lives are saved everyday.

You can donate by clicking here.

True Food Kitchen

I get regular emails from Phoenix Children's Hospital because I'm on the "Miracles in Motion" team raising money by running the half marathon. And sometimes we get invited to do really cool things because of it. In this case, we got free dinner.

There is a new restaurant opening in Scottsdale called True Food Kitchen. And they had a practice night where we come eat their food for free so their servers and chefs can practice cooking and serving. When I called I asked about the menu, because of my dairy free status, and she said they had vegetarian and vegan menu choices. I figured a place called True Food Kitchen would be pretty accomodating. So, I booked it. It was when my mom would be visiting and we could call it a birthday celebration. They only had reservations left that were really early (5:30, 5:45) or really late (8:00 - 9:00), we booked ours at 8:15. I figured 1. Sadie could be bathed and jammied by then, and 2. since the restaurant is on the complete opposite side of town we'd have less traffic later at night. It ended up working out perfectly because Brian didn't even get home until after 6:00.

Sadie screamed the whole way there, totally stressed out my mom, but then she turned into an angel child and we didn't hear another peep out of her. She actually fell asleep while we were eating dessert and only woke up when put in the car. I think it helped that Daddy held her all evening. She can be such a good baby when she gets what she wants!

There were "rules" to our dining experience, but they were very generous. We all got to order a drink (we never order drinks, we usually just drink water. In fact we had to convince Brian to get a drink because it was free), and they had fun drinks they called "Natural Refreshments." Mine was matcha (the holy grail of green teas) and honey. My mom ordered one with ginger, agave with soda water, and Brian's had pineapple and orange juice mixed with coconut water. They were all very interesting (of course we passed them around) and very good!

Then, because we were a party of 3, we got to order 2 appetizers (something else we never order). We had a hard time agreeing, but settled on the hummus and the crudites...I think the thinking was that when the pita was gone, we could dip the veggies in the hummus. We were very impressed with both. The crudites were served to us like a bouquet in a jar with ice water, it was pretty neat.

Everybody was allowed to order 1 entree, of course, but they asked us to all please order something different. That wasn't hard. The food was unique, in a good way. It was healthy, minimal meat, mostly fish or chicken, sustainable and organic. I ordered some curry chicken with brown rice and veggies, Brian got a spaghetti squash casserole, and my mom got ramen with white prawns. The portion sizes weren't huge, which was nice because we had appetizers, but they weren't small either. We definitely didn't leave hungry, but we weren't overfull and bloated...and we even had dessert.

Dr. Weil was actually there when we were!! I get the impression this is how the restaurant balances their menu as well.

Dessert is definitely something we go without when dining out, but they allowed us to order one for the three of us to split. We had a hard time deciding because my mom doesn't eat fruit after noon, and I don't do dairy...we finally settled on the flourless chocolate cake, and got the ice cream on the side. It was the size of a ramikin, but just enough for the 3 of us to share. It was warm and gooey and rich and chocolatey, seriously the best thing I'd eaten all week...and it was vegan.

But the other dessert we almost got was made with olivello berries. We had read that they are the only restaurant in the nation to serve these berries, which are buckthorn seed berries...so we really wanted to taste them! Luckily our waitress was awesome, and when we couldn't resist the temptation of the chocolate cake, she offered to bring us a sample. It was pretty yummy, but I was glad we went with the cake!

Overall we really joined our experience, the service was friendly, the food was fantastic, and the atmosphere was comfortable (we ate outside under the heatlamps, it was pretty cozy). I would recommend True Food Kitchen if you have one near you, just for the experience of foods that truly are different.

Team Neuro-NICU...and the Yeti

This morning we attended the second ever (but our first) Neuro-NICU reunion. They had a theme "Team Neuro-NICU" and they made every brain-cooled child a jersey (red t-shirt) with their number on the back. Sadie's number is 47. She was the 47th baby to be cooled at Phoenix Children's Hospital, which has one of only 2 Neuro-NICUs in the country. (Let me clarify that many hospitals have the brain-cooling technology, but to be a Neuro-NICU your staff has to have special training and you have to have capacity to cool a certain number of babies and there are a number of other criteria you have to meet.)

I was a little nervous about going to this event. I was afraid it would bring back some tough memories...and it did. But the idea of showing Sadie off to a bunch of people who thought she was going to die was too hard to pass up! What I didn't expect to be so hard was seeing all the other families, families with tiny babies that are just starting out their journey. They are so thrilled and overjoyed with their little babies and excited they're doing so well...but behind those smiles there is a fear of the unknown, a fear I am familiar enough with that I can recognize it a mile away.


We got to see Dr. Carballo, the neonatologist who heads up the neuro-NICU. (I don't know why we don't have any pictures with her! Sad.) She is a wonderful woman who hugged I think, every single person who walked in that door. Even though she knows that this brain cooling saves these babies, she is still so genuinely happy for every family that she has helped. I remember her crying with us in the NICU, over the bad and the good. I remember feeling how much she really cared about us and about Sadie. What a hard and wonderful job she has.


We also got to visit with Dr. Blackham, she is the developmental psychologist that tracks Sadie's progress developmentally. She is also a wonderfully sweet woman. She is addicted to coffee and walks around in the sock feet, and I love her. She held Sadie a little and loved on her some. It was good to see her.


And we got to see Amy. We dubbed Amy the Neuro-NICU ambassador. She was as busy as a bee in that place walking around meeting people, swapping stories, and introducing people to others. At one point she was getting everyone's email/facebook information to start a group! She is so great.

When Sadie became an official graduate of the Neuro-NICU, she was given a little beanie baby of a polar bear wearing a shirt that says "NICU graduate." It's cute, the officially mascot of the Neuro-NICU is a polar bear...you know, because he's "cool." So there was a person there today dressed up like a polar bear. Only he looked more like a Yeti. Decide for yourself! Either way, he was a little creepy.


All in all it was a good morning. It was good to be there, I think it's an important step in the healing process (sorta like returning to Auschwitz...okay well maybe not that dramatic, but you get the idea!). Sadie did really well and kept her cool and of course she showed off her cute self like she does so well. It'll be good to go back next year and see how far everyone has come.

Sadie's radio debut

Yesterday Sadie and I had the opportunity to be part of something big. KTAR, a local radio station here hosted a Radiothon to raise money for the children's hospital. It started Monday at 3pm and went until Tuesday at 7pm...and I'm not sure, but I don't think it even went over night. In just those few hours, they raised OVER $1million! The final total was $1,054,965. That is a LOT of money.


But even more amazing was to hear how many lives this hospital has effected, and I don't just mean this year, I'm talking EVER. Local celebrities like Kurt Warner and John McCain have been effected by this hospital. (side note: I was really hoping we'd get to meet Kurt Warner, but apparently he's too busy with Dancing with the Stars to even be in town! How cool would that have been though? A picture of Sadie and Kurt for the baby book?! Awesome.) They even played a story of Glenn Beck talking about how his daughter had fetal strokes and came to the NICU at Phoenix Children's Hospital.

So, Sadie and I were asked to come tell our story on the radio for people to hear. Our story is special because we were part of the Neuro-NICU. There are only 2 NICUs in the country who meet the criteria to be labeled Neuro-NICU, and PCH is one of them. A number of other hospitals do brain cooling, but even that is fairly new technology, not a lot of people know about it. But because of our amazing story, they asked if we'd also be part of future events like this. I told her to call us for the rest of our lives, we will shout our story from the rooftops if it'll help raise money for this hospital!

Anyway, Sadie was a hit, of course. The moment we walked through the door we were surrounded by people doting on her. What a special little girl she is that she is able to light up a room already, at 8 months old. Even the old men couldn't stay away! I mean, I think she's the cutest little thing...but I'm sorta biased, so I love when others confirm that for me! And she was so good. She was so upset in the car on the way there, but as soon as we got there she nursed herself to sleep for a half hour...long enough to recharge her batteries. That made a world of difference!

So without further ado, here's the video of our interview! Sorry I can't imbed it, but if you click the link below you should be able to watch it.

Radio Interview

I also want to remind you that I'm still working on getting ready for that half marathon in January. It's another fundraiser for Phoenix Children's Hospital. I've committed to raise $1500 and I'm a third of the way there. I'm a little disappointed in how many people HAVEN'T donated (yet). So many of you take for granted that your children are healthy. And so many of you love Sadie and know what this hospital has done for us. THEY SAVED MY BABY'S LIFE!!! Please consider giving. It doesn't have to be a lot...nobody will even know how much except you and me. But getting to that $1500 mark is really important; for me, for Sadie, and for the hospital. You can find the fundraising page either on the right side of the blog, or by clicking here. It's easy to give online and it's safe and secure. So please don't delay any longer in donating.

Thank you. And thank you Arizona for being so generous during the Radiothon this week.

Miracles in Motion

Saturday night Brian and I did something we've only done twice since Sadie was born...we went out as adults, without Sadie. In fact, Saturday night we attended the kick-off party for Miracles in Motion.

Miracles in Motion is the name of the fundraiser I have joined up with to raise money for Phoenix Children's Hospital. I am training to run a half marathon (13.1 miles) in January, in fact 3 days before Sadie's first birthday...which is part of what makes this event so special. Saturday night we learned a lot about the Children's Hospital's financial needs and why it is so important that we raise this money (aside from the obvious emotional connection we have to this hospital, who we believe saved Sadie's life).

* Phoenix Children's Hospital was started in 1983 and is now one of the 10 largest children's hospitals in the country.

*Phoenix Children's Hospital has Centers of Excellence in Noenatology, Hematology/oncology, Neurosciences, Cardiac services, Orthopaedics, and Level 1 trauma. They also offer world-class care in 40 sub-specialty fields.

*Phoenix is the nation's 5th largest city and continues to grow. Phoenix Children's Hospital, in preparation for the 1.5 million children estimated to live here by 2030 is building a $588 million expansion.

*This new expansion is in the form of an 11-story tower including private ICU rooms, 12 additional operating rooms, 1500 new parking spaces, 626 more beds, 520 beds in private rooms for children and their families.

* Phoenix Children's Hospital is Arizona's ONLY licensed children's hospital.

*The Bill Holt Clinic at Phoenix Children's Hospital currently serves about 270 children living with HIV.

* More than 550 pediatric heart surgeries took place in 2007.

So, as you can see, Phoenix Children's Hospital is doing great things for children in not just the Phoenix area, but in surrounding areas as well. When we were in the NICU, we heard they were flying in a baby from Las Vegas! I also know that there are many families that come from Flagstaff, Prescott, and various other cities in Arizona. Brian and I discussed the expansion, and while it's great that they are expanding, we found it a little sad as well that it's needed. But we know they are helping a lot of children, and we also know how nice it'll be for families to have private rooms.

Please support me in my efforts to not only run a half marathon, but to raise money for this hospital. They saved Sadie's life by using cutting edge technology, they've declared Sadie seizure free through their epilepsy monitoring unit, we see our pediatrician there, we go there for tests, it is a very important place for us. Any amount will be appreciated.

Thanks

A Helping Hand

If you remember, I started the Couch to 5K program back in April? May? I can't remember. Anyway, it all went south when we encountered sleeping problems. You see, where we live it's not uncommon for the temperature in the summer to be well over 100 degrees. Often it's over 110. So, for me to go running it had to be EARLY in the morning when the weather is coolest. And even then it was still in the 80s, that's just about as cool as we get...if we're lucky. So, as you can imagine, if I'd be up with an awake baby for 3 hours in the night and was just thinking about getting back to bed at 4:30 (or sometimes 6:00) there was no possible way I could have gone running at 5:30!

Excuses, excuses, I know. And I'd even bought a fancy new pair of running shoes.

Well recently I've upped the ante. I'm not only shooting for 5K, or even 10K, now I'm looking to run a half marathon. Why? you ask. Because it's for a good cause.

When Sadie was born, she spent her first week of life at the Phoenix Children's Hospital (PCH) in the NICU. We were blessed by this hospital and their staff, and we continue to conduct Sadie's business there. We even drove the extra distance to PCH when Sadie had her overdose (for which we've decided to sue, by the way) because I knew they'd have the best care for a baby, and because I knew they'd be able to find all our information without me having to explain everything. They are so great there. In fact, there are no words to express how great they are.

PCH gives hope where there is none.

PCH works miracles in the lives of children, the faces of our future.

PCH save families.

PCH cares about every little toe and finger of every child in their care.

PCH strives to give the best even to those who can't afford the best.

PCH understands how hard parents work to give their children the best.

PCH goes out of their way to make you feel at home, when they know you are so far from it.

PCH wants to make you smile, even in crisis.

PCH gives hugs for free.

Do I need to go on? I feel like I could do this for pages and pages!

So, here's the deal. Every January Phoenix hosts the PF Chang's Rock 'n Roll Marathon. And PCH takes this opportunity to fundraise. I have teamed up with PCH and committed to raising $1500, as well as to run a half marathon on January 16 (3 days before Sadie's first birthday). It's the perfect combination of celebrating Sadie's life as well as giving back to those who allowed her to experience life. But it's going to be a lot of hard work for me. However, as we come down off the hot weather, and as we seem to be getting better at sleeping, I have plain run out of excuses so I'd better get my butt in gear.

All the while, I'd like to ask you for help as well! First of all, pray for me. I know many of you already pray for Sadie, possibly our family, so I'd ask that you add my physical health and motivation to your list. Second, I'd really appreciate it if you'd consider donating to PCH on my behalf, on Sadie's behalf. I've committed to raising $1500 by November 16, and personally, I think I can raise twice as much!! So, please help me reach my goal. Show your appreciation for what they've done for Sadie and what they're doing for hundreds, thousands of other children.

You can click on the button below and it'll take you to my fundraising page where it's safe and secure to give. Give anonymously or put in your name, it doesn't matter, it's not about showing off. But please, support us in any way you can.

For Documentation Purposes

Today was a pretty scary day. My poor little Sadie spent most of the afternoon in the ER. Her woes seemed to be due to medical negligence, and so I write this to preserve the facts as we plan to move forward legally.

While in the PEMU earlier this week, Dr. Rabin suggested we start giving Sadie something called Baclofen to help with her high muscle tone. It's basically a muscle relaxer because she's tight all the time, he said he'll start her on the lowest dose and we'll see how she does. He also mentioned we should do it right then while she's on the monitoring because Baclofen can lower a person's threshold for seizures, and we'll know right away if this happens. We started it the next day, she was supposed to get .1mL 3 times a day, which is 1mg and BARELY a drop of medicine!

She seemed to do fine, and her muscles seemed to be relaxing, so Dr. Williams (the neurologist) wrote the prescription and the hospital found a pharmacy who would mix the compound and called it in. They also gave us the paper prescription when we were discharged Wednesday morning (she had been given 3 doses total when we left the hospital).

Brian picked up the prescription that afternoon and we gave her her first dose at home Wednesday evening (so she skipped the Wednesday midday dose). The bottle from the pharmacy said to give her 1mL, which is a lot more than the tiny drop we were giving her at the hospital. But, like so many medicines, I figured the concentration was different than what they were giving her at the hospital, and we gave her 1mL.

Sadie fell asleep that night at about 7:50pm. She snored a lot during the night, and even had some periods of apnea, it worried me a little bit, but I didn't know what it would be. She slept in her crib all night (which doesn't EVER happen), and when she stirred in the middle of the night, I pulled her to me to nurse back to sleep (and fill her tummy), but she fell back asleep as soon as she got close to me. I figured she had been cold and being next to me and under the covers made her all cozy so she could fall back asleep. I was AMAZED at how well she was sleeping! I even got up early and went for a walk!

I had to WAKE her up at 7:45am, and even that was tough. She didn't want to nurse, she wanted to go back to sleep!! I couldn't believe that she was still so tired! But I gave her another 1mL of medicine then (at 7:45) because that's when her next dose was supposed to be. Then I went to change her diaper and it was completely dry. I was amazed, and thought she must have slept hard! I was still having trouble keeping her awake though.

I got her dressed and tried to nurse her again, she sucked a little, but immediately started choking and coughing and gagging. I wondered if her new medicine was causing her throat to relax and making her aspirate. So, I called and left a message for her pediatrician. Then I tried to nurse again, same thing. She was really floppy, I could manipulate her arms and legs unlike she usually lets me, and she was very calm, dopey, not herself.

We had Occupational Therapy at 9:00am, Jessica came to work with Sadie. She noticed Sadie was sort of out of it also. When she got there I had placed Sadie on her tummy and she wasn't even crying like she usually does, she was just laying there passively. She didn't want to hold up her head, her top half was really floppy, but her legs were VERY stiff. And when she cried/protested, it sounded funny. Her voice sounded funny. About half way through therapy, I tried to nurse Sadie again because she was indicating that maybe she was hungry, and she nursed briefly, but she just wanted to fall asleep, so I pulled her off and gave her back to Jessica. At one point, when Jessica was holding her Sadie spaced out for a moment, even Jessica said, "you weren't with us for a moment there!" I wondered if that could have been a seizure and I worried since we had JUST come home with a seizure clearance.

As Jessica was leaving, I sat down to try to nurse Sadie again, thinking she was probably tired. She was crying a weird cry that didn't sound right, so Brian took her for a moment and he agreed with me that she was acting weird. I told him I wasn't going to give her anymore of that medicine until I talked to the doctor because I didn't like what it was doing to my baby. That's when Brian suggested maybe the dosing was wrong. During this conversation, Sadie had nursed herself to sleep in under 10 sucks and was SOUNDLY sleeping in my arms. Usually when Sadie sleeps, she startles a lot, and the slightest movement when holding her will wake her up, this was limp limbs, toss her around, never wake up sleep. We got the bottle of Baclofen and read the dosing again: 1mL. Then we read the strength, that it's 10mg/mL. I quickly did some math in my head and said to Brian, "wait, her prescription says to give her 1mg, and if this is 10mg/mL and we're giving her 1mL...we gave her 10mg!! No wonder she's dopey!"

We immediately called the pediatrician's office again, but nobody answered and we had to leave a message. Next I tried the neurologist's office and a nurse answered there, Stephanie. I told her what happened and she kept putting me on hold and trying to reach Dr. Williams or Dr. Jarrar (who also knows Sadie) to find out what to do. She said we could bring her in if we felt like we needed to, but Sadie was sound asleep in my arms and didn't seem to be too bad off. Stephanie told me that since it's a muscle relaxer to keep a close eye on her breathing, I assured her that Sadie was breathing, but her breathing wasn't normal. I asked her about the eating, because it was now 10:45 and Sadie hadn't really eaten much since 7:30 the night before!! She told me to try to wake her up at feeding times and encourage her to eat, but she may not be interested. She said it's important for her to sleep and when the medicine wears off she'll be hungry. And she made sure to tell me NOT to give Sadie anymore medicine until we talk to her again in the morning! She also asked about seizures. I told her I think maybe I saw one already. She told me to keep an eye on that and if I see Sadie having big seizures, cluster seizures, or doing anything concerning to bring her in right away.

I didn't want to put Sadie down. Her breathing was irregular. She was still snoring and having episodes of apnea, but I had to go to the bathroom and my stomach was growling because it was after 11:00 by this time! I laid her on the floor while I used the bathroom and made lunch and I noticed that her lips were blue. She looked dead and it scared me. But she was still breathing, so I figured we just needed to get through it and she'd be better tomorrow.

Then she woke up.

She woke up about 11:45am and was groggy, nursed a little, then went back to sleep for another half hour.

The next time she woke up (about 12:30) she wasn't happy at all. I couldn't get her to nurse, she just kept screaming, and her voice sounded funny (I think her vocal cords may have relaxed and this is why her voice sounded funny), it was lower, more throaty. So, I tried putting her in the bouncy seat and that didn't help either. I picked her back up and tried again to nurse her, more screaming. So, I laid her on my knees and she started shaking. Like weird shaking with her arms outstretched and uncontrollably. That scared me. I didn't know what to do, but then it happened again and the look on her face was of utter terror. I called the nurse back and she said, "I can hear her screaming, take her in."

I grabbed my purse, Sadie's blanket, and the medicine (and the written prescription) and headed out the door. I put Sadie in the car seat and called Brian as I was pulling out of the driveway. He said he'd meet us at the ER as soon as he could. Even though PCH is not the closest hospital, I knew it was the best place to take her since 1.they have all her records (and I mean ALL), and 2. I know they are the best at treating children. And I didn't regret it. The car ride was HORRIBLE. Sadie would stop screaming (probably because she was having a seizure) and I'd reach back and pat her on the head or flick her cheek to get her to cry again. I was so afraid she was going to stop breathing, and I couldn't see her. I knew as long as I could hear her crying she was breathing. The one time I WANTED her to scream in the car!!

PCH has free valet parking, so I pulled up and asked the guy where the ER was. He quickly wrote my ticket up and we practically ran to the door. When we walked in everything happened VERY FAST. I'm sure I looked terrified. I was carrying a screaming baby. One guy handed me a visitor's badge, another guy asked me what happened. Luckily, I had the presence of mind to bring the medicine, so I pulled it out of my purse and said, "she ODed on this." I followed a nurse back to a room and laid Sadie on the bed and that's when I saw the scariest thing I've ever seen. I saw a BIG seizure. Her pupils were dilated, her eyes were darting back and forth, her arms were outstretched shaking, then she'd bring them in tight and to her chest and everything went rigid. I said, "look! Look what she's doing!" I swear we all stood there with our mouths open and watched. They quickly got a pulsox on her to measure her oxygen levels, I told them her breathing was irregular, then they stripped off her clothes and put the EKG monitor stickers on her to measure her heart rate, and a blood pressure cuff went around her ankle. I was crying, they were telling me it's not my fault and I came to the right place, then the lady came to ask me who we are. This is why I came to PCH, all I had to do was tell her Sadie's name and birthdate and she was able to get everything from the system. That took a load off of me!

I was asked a lot of questions about Sadie's medical history and about what happened exactly and what I had observed up until now. Then Sadie calmed down a little bit, and I calmed down a little bit, and WHERE WAS BRIAN!!! Next a doctor came in to ask me more questions and to look at Sadie. He took the bottle of medicine and went to call a toxicologist. When I asked him how do we detox her, he said he was waiting to hear if what we gave her was a toxic amount. If it was determined that she did get a toxic amount, they'd admit her and keep her overnight. If not, they'd just keep her for a few hours to monitor her. By the time he came back, she was already coming out of it. The doctor told me she wasn't acting like she should if she'd ODed on Baclofen. When I asked him what it should look like, he described to me what Sadie had been doing the first half of the day, before the seizures started. But once she started seizing, she tightened back up and started screaming, instead of being floppy and comatose, like before. He said it's good that she was looking more normal, even her pupils were starting to shrink a little. By the time Brian got there she was almost quiet.

They decided to keep her and watch her for at least 4 hours. They wanted us to sit with her and let them know if we see anything weird, or normal, and they wanted to make sure she could eat and pee and stuff before she left. So, we sat there for a long time. And Sadie calmed down quite a bit, but everytime I started nursing her she'd cry, or even scream again. But, eventually she did nurse, and she started to fall asleep again, and eventually she did fall asleep, and she was soundly sleeping when the toxicologist came in to talk to us.

We relayed our story again to him and he assured us that any seizing that Sadie did did not cause permanent damage. The thing they'd worry about with seizures is low blood/O2 levels because these can cause lack of O2 to the brain, but Sadie's levels never went so low that she was in danger, and she was at 98% when we were talking to him. He also said that the amount she overdosed was not enough to have long-lasting effects on her system. He said we gave her 10X too much, but it'd really have to be 1000X to REALLY hurt her. So, that was good news too. He told us we could choose to keep her overnight for more monitoring, which he recommended, or we could take her home. He wanted to keep her there in case she had another big seizure with the crazy eyes and the tightening up of limbs and everything. He said they could break it via IV if she was in the hospital. We politely declined. We have the same medicine at home that they would give her in the hospital to break/treat the seizure, she seemed to be a lot better already, and we (I) did not want to stay another night in the hospital!! So, at 5:50pm, we left PCH and headed home.

Since we've been home, Sadie's been a little fussy. We had to give her her phenobarb (unfortunately), but then we took a nice long bath, and the warm water calmed her down quite a bit. She is still very tired, and as soon as we were out of the tub, she fell right asleep. And she's sleeping hard, she is laying next to me on the couch as I type. She will be sleeping with me tonight so that I can listen to her breathe all night! And hopefully in the morning, she'll be back to her *cheerful* self again. Poor little baby, what a rough day!

Day 2/ Night 2 in the PEMU

Another day down in the PEMU. Some things happened (like X-rays), and some didn't (like naps). Sadie screamed another day away, and then finally fell asleep an hour before daddy came. I've never needed a break from her so badly before!! And I did get a break once she woke up and Brian was there to watch her.

I went down to the library at the hospital and checked out two books. The first one is called The Out-of-Sync Child and claims it's the "parents' bible to Sensory Processing Disorder. I haven't started reading this yet, but I hope it has some ideas on how to help Sadie cope with her environment. The other book I checked out is called Teaching Motor Skills to Children with Cerebral Palsey. I might actually end up purchasing this book. It is really good and seems like the kind of thing we will want to continually reference as Sadie progresses. I just started reading this and it's like they KNOW my child, which makes me feel like the advice and exercises they recommend are credible. I'm excited about this book.

X-RAYS?! WHAAAA?!! That's the reaction I had. Sometimes it's like people at the hospital assume you can read their minds, so they just drop information in conversation like it's no big deal. Not much gets by me. I asked. The nurse told me some doctor I'd never heard of (let alone met) requested X-rays of Sadie's hips. I was sure they must have gotten her mixed up with someone else...but then she came back and told me it was actually Dr. Rabin (he's the rehabilitation therapist we saw the first night we were there). And actually, I was glad they were going to X-ray her hips, because I have hip issues that are hereditary, and her condition makes her prone to hip issues, plus genetics do too. The outcome was that her left hip is a little out of socket, so we are supposed to go see Dr. Rabin in a couple of weeks to talk about what to do about this. Because of my history they can't tell yet if Sadie's hip displasia is congenital or developmental, but I'm glad they're finding it now and not when she's learning how to walk.

Our night was rough, but that's to be expected with sleeping with the lights on. Sadie fell asleep fairly quickly once she had her medicine and her melatonin. Sadie's getting good at falling asleep nursing, but then letting go and not needing to nurse the entire time she's asleep, so I was able to sit there for a while with her while Brian and I hung out a little. And I met our night nurse. It was almost 7:30 and I mentioned to her that when Sadie wakes up in the middle of the night she can check her vitals (they have to put this blood pressure cuff on her and it squeezes and she hates it) and give her her (new) medicine, and more melatonin. This worked SO WELL the night before. What I didn't realize was that the night before we had a competent nurse. So, Sadie and I laid down around 8:00 and she slept soundly, while I laid there and listened to the announcement that visiting was over, then listened to people saying goodbye and leaving, then listened to children protest to shots/going to bed/etc, then listened to babies crying...finally I turned on some white noise. But, our nurse came in around 9:00 and listened to Sadie's heart and lungs and tummy, and we talked again about how I'd call her when Sadie wakes up (between midnight and 1) and we can do meds and melatonin. 1:00 came around, Sadie woke up, and I held up my side of the bargain. However, nurse "doesn't-get-it" had to call the doctor to approve the melatonin (even though we gave it to her the night before AND I told her twice I'd like to give it to her again), then wait for the pharmacy to send it up. It took almost 2 hours, and by the time we gave it to her we had lost our window of opportunity to go back to sleep peacefully. I ended up having to move to the little couch and nurse her to sleep, then bring her back to bed. Normally, this wouldn't be a big deal, but 1. we were sleeping with the lights on and I was REALLY tired and cranky, and 2. she was all hooked up and moving her takes 2.5 hands (but it's easier with 3). Needless to say, I'm super mom and was eventually successful at not only putting her back to sleep, but transferring her to bed without her waking up. Whew!

Morning came too soon, and people started coming in and out of the room hustling and bustling about. Before we realized, there were 2 ladies in there removing Sadie's "headdress"!!! They never told me, but I figured it was a pretty fair assumption that we were going home! Soon after Dr. Williams came in to talk to us. I love what he said, "we treat seizures, and since she's not having seizures and there's no EEG seizure activity, there's no reason for her to be treated." I think we probably knew this 3 or 4 months ago...but the medical world needs real, tangible evidence. Now we have that evidence and we can go home and start weaning off the phenobarb. It's going to take 6 weeks to wean Sadie down because it's important her body doesn't go into shock or withdrawals from being on it for almost 7 months, but then we'll be done!! Dr. Williams was careful to tell me that Sadie still shows a lot of tendencies for seizure activity and don't be surprised if they show up later down the road, but he never promised it will or won't happen, just that we'll cross that bridge if we have to.

So, we go home victorious. To God be the GLORY for my baby's health and well-being. And may we never have to sleep with the lights on again!!

This was a test where they flash a strobe light into Sadie's eyes to see if it'll induce a seizure.

Cozied up with my babe.

This is Sadie sleeping, you can see the video of her in the background. We were always being watched, it was sort of creepy.

Taking the EEG off was a little easier than putting it on!

Sadie flirting with Dr. Williams (they were saying goodbye)

Day 1/Night 1 in the PEMU

PEMU stands for Pediatric Epilepsy Monitoring Unit, and boy do I wish we didn't have to be here!! Sadie is being hooked up to an EEG monitoring system to determine her seizure activity in hopes that we can be med-free...at least for seizures!

We got here about 7:15 Monday morning (on 8-9-10!) after Sadie had pretty much woken up around 2 and never really went back to sleep (maybe a short nap in the bouncy seat). So, we were all tired and cranky to begin with. But people at the Children's Hospital (PCH) are so nice, and they welcomed us no matter how whiney or cryee we were...mostly Sadie was this. Luckily, we had brought the bouncy chair with us, so Sadie was able to bounce for most of the morning, when they weren't squeezing her, and listening to her, and undressing her and measuring her. However, once they put on the EEG electrodes, we were told the bouncy chair 1. was too much movement on her head where the electrodes are, and 2. was too much motion and interfered with the EEG reading. So, we had to give it up cold turkey.

We met a new neurologist, Dr. Williams, the one recommended to us by our pediatrician (everybody LOVES our pediatrician, by the way...I think we hit the jackpot with her!). In the 20 minutes we talked with him, we probably got more useful information than we've EVER gotten from Dr. Jarrar in all our visits combined!! He said he was going to go ahead and make the diagnosis for cerebral palsy for Sadie (Dr. Jarrar simply told us they can't diagnose until kids are 2, but she'll have it for sure), and he really made sure I knew what that diagnosis means. Then he went the extra mile and called the library here at the hospital and had them put together a packet of information (complete with an available book list) about CP for us, and told us to check out the CP You Tube channel. When I mentioned that we don't communicate well with Dr. Jarrar and he's been recommended to us as a neurologist we might want to switch to, he told us that if it's determined that she's not having seizures, he'll give us a schedule to wean her off the phenobarb, then we won't really have to see neurology anymore unless she starts having seizures again at a later date...which is realistically possible. Then he mentioned that her muscles are tighter on one side more than the other and wanted us to talk to a habilitation therapist (I think Dr. Jarrar mentioned this therapist, however, all she said was we needed to see him...not how, why, or who he was). This therapist, Dr. Rabin, came in later and mentioned that we could get a brace for Sadie's trunk to help her with sitting. He also said there's medicine to help with muscle tone that can help her have more control over her limbs (which would be nice as she's starting to sort of bat at things and reach for them). We're going to try this medicine while we're here in the hospital because one of the side effects is that it lowers her threshold for seizures, Dr. Rabin thought since she's being monitored right now it'd be a safe place to experiment. (the other side effect he mentioned was sedation...which I don't like, but on a low dose it might just be enough to make her tolerable)

Once the electrodes were put on Sadie's head, which she HATES, she continued to scream for another 3 hours!!! We had no bouncy chair, so I was stuck just letting her tire herself out...which you would think would be short seeing as how she was short on sleep. Nope, not my daughter!! Unfortunately, we are also being video monitored, so not only could everybody in the hall hear her screaming, but most of the staff could also SEE how miserable we were. However, this turned out to be a blessing once she finally fell asleep because they knew how long and miserable the going to sleep process was, and they knew not to disturb us. So, we had 3 good hours of napping undisturbed. Luckily, my dad came during this time and I was able to hand Sadie off to him and get a break. There's no way I would have been able to sit there for that long with her! And I was able to lay down for a few minutes as well. It's hard to move around with her anywhere because she's all wired in and whenever you go anywhere with her, you also have to take this "battery pack" pouch and make sure none of her cords are tangled. It's not easy if you're by yourself.

Later in the evening, Brian came and we were able to have dinner and get Sadie her medicine. She luckily went to sleep pretty quickly. It was funny because her bedtime is right about when the nurse shift changes, so our new nurse came in to check her vitals and stuff and I was like, "she's down for the night, sorry dude." So, we agreed I'd call him when she woke up, which happened to be about 1:00am. We had also talked to the nurse about giving her a second dose of melatonin at this wake up juncture (because she has a tendency to wake up and NOT go back to sleep for 3-4 hours), so we were able to give her more of that around 1:30 and in an hour she was back asleep...until 8!!

Sleeping was rough on me. When we first checked in to the hospital they had a crib in the room for her and told me the couch folds out for me to sleep on. I very politely told them there's NO WAY she's gonna sleep in the crib without me...as much as I'd like her to. So, they brought in a bed for us to lay in. It wasn't a bad size, we both fit in it pretty well, so I think that helped her sleep as well. But because they have to video her, we had to leave the lights on all night...OYE! Okay, for one, it was a little creepy to be videotaped sleeping (even though I bet we were pretty cute all cuddled up together), but we layed down about 8:00pm, and I woke up at 9:30 SURE it was probably 2 in the morning already. I couldn't believe it'd only been about an hour and a half!!! Sleeping with the lights on is ROUGH, like prisoner torture rough. Plus, to top it off, the night shift wasn't real quiet out in the hall at about 3:30, and starting at about 7am, they started coming in our room and checking things.

This morning, Sadie has been in THE BEST mood!! Sleeping really helps...if only I had had restful sleep as well, but I think we know what to do now at home. Dr. Williams just came in and told us he saw NO SEIZURES yesterday!! woo-hoo!! He said I almost fooled him when I was bouncing her (during her 3 hours of SCREAMING), but then he looked at the video and saw why it looked like seizures (see? good thing they do the video). He said of course she is still at a 70%-90% risk of developing seizures in the future because of the brain damage she suffered, but that if he sees the same thing today he'll let us go home tomorrow, with a schedule to wean her off the phenobarb. This is the best news we've had since we were discharged from hospice!

So, we're here for Day 2 in the PEMU. I'm going to try to get down to the library, and try not to be too bored! Keep praying for us!

This is Geri, she's done all of Sadie's EEGs, even the ones in the NICU. She's really nice.

Daddy always makes it better with his silly noises and his kisses.

These are the electrodes Geri put on her head, 25 of them. Each spot scrubbed, dabbed, and "cemented."

Almost done and ready for the gauze hat!

Geri working on Sadie's head. She is VERY good at what she does. I'm always amazed.

Sadie's ski mask...or we like to call it, her "abominable snowman costume!"

Finally asleep with grandpa after 3 hours of screaming.

So happy after a nap!

Getting ready to go to bed!

Tired baby. She was asleep within minutes of this picture!