Friday, November 2, 2012

Staying busy

Disclaimer: This post isn't so much about Evan. This post is mainly written for myself, and some very special young ladies, who will always hold a very special place in my heart. If you are not a member of the MCHS cheer squad, you may want to just skip this entry.

 The night before our scheduled C-section was spent in downtown St. Louis. We went out to dinner at our favorite restaurant (Charlie Gitto's) and then headed over to the hotel. In those hours, I received numerous text messages, Facebook posts and emails. These were filled with love, support and encouragement. Several from my cheerleaders left me in tears. To have these young women fill my heart with such love was a moving experience. When I held tryouts this year, I was 3 months pregnant. I had no idea what was in store for me, but I knew this season would be unlike any other. As we moved from tryouts to summer camp, Evan's medical issues came to light. There was a point over the summer where I wondered if it would be best for me to turn the squad over to someone else. Would I be able to give them the time and focus they needed? Would the drama and stress that comes from coaching high school girls be to much to deal with? I wasn't sure, but what I did know was that this group of girls is unlike any I've coached before. First of all, there was 23 of them, and that in itself is a lot for one person to take on. I thought about it, and I decided that I had worked to hard and put up with way to much over the past 5 years to walk away from THIS group. This is the group that, along with a wonderful middle school coach, I've gotten to work with since they were 7th and 8th graders. In addition to these ladies, came girls who transferred in, girls who had never cheered before, and girls that left volleyball to give cheer a chance. I decided that this maybe exactly what I needed. It would be a challenge, something to keep me busy, and hopefully, keep my spirits up. I can say without a doubt, that this is exactly what happened. (Thank goodness too, because this decision could have gone the other way and ended in disaster!)

 They are young, and as young ladies often do, they worry about things like who is sitting with who on the bus, how their jeans fit that day and if their makeup looks just right. These are the type of things they SHOULD be worried about. Sadly, they also have bigger issues. Things kids shouldn't have to deal with or worry about. I normally keep my life private (as much as you can in a small town ;) but I felt that maybe if I shared what I was going through, it would help them see that you can be faced with a less than ideal situation and still find the good. To stay positive and focus on the good things in your life, not just the bad. To get up and go on with your daily life, even when all you want to do is lay in bed and cry. That we are ALL stronger than we know.

 To say that we had a wonderful season would be an understatement. (I could talk about the reduction of drama, the fact that they rarely missed practice/games/community events, or their squad GPA of 3.6...but I think this story sums up the season better.)Early on (week 2 or 3) They cheered for 2 hours in the POURING rain (thank you, hurricane Issac!) with only 20-30 people sitting in the stands. Did I see a frown or two at first? Sure, but by game time, they were dancing and singing and having FUN. As I stood below the bleachers watching them the cheesy cliche was almost enough to make me laugh out loud. Here were these girls, dancing like complete goofballs in the pouring rain, soaked to the bone with mascara streaming down their faces, and they didn't care. They were dancing the rain with not a single care as to how they looked, or how uncomfortable they felt. They were making the best of a bad situation. I had started this season thinking maybe my positive outlook would rub off on them. And there they were, dancing in the rain. Showing me that even when life hands you lemons, you make lemonade.

 As the season drew to a close, I cherished each game. In years passed, as the season wore on, Id be frustrated by the cold weather, the drama, cheer moms...but this year none of that was an issue. Every game I made it to was one more I got to spend with "my girls." As I boarded that bus for our 1st, and then 2nd post season district game, I thanked God. Not only because of the extra time I got to spend with these wonderful young women, but because it was one more week of Evan's lungs developing. One more week of him growing strong. At our last game, these ladies surprised me with two framed letters, one to me, and one to Baby Evan. Again, I was amazed by their spirit and dedication to this squad, to each other and to me. The letter to Evan sat on a shelf in his room at the NICU, a constant reminder of some pretty special young ladies. I am so thankful I didn't hand this group over to someone else. They brought a great deal sunshine into my life and when I look back at that summer and fall, yes, there was heartbreak, sadness and worry...but there was also laughter, joy and many MANY memories.

 Love you ladies :) Mrs. Kim

Hope, Faith and Cardinal Glennon

Soon after finding out Evan had fluid on his brain ,we were referred to the Fetal Care Institute at Cardinal Glennon Children's Hospital in St. Louis. Growing up in the suburbs of St. Louis, I knew what an amazing hospital it was. The mix of emotions I felt pulling up outside before our first appointment were unbelievable  I was heart broken and thankful, all at the same time. When we walked into the office, the receptionist greeted  us by name and lead us to a room with a couch, a recliner, a flat screen tv and a computer. We met with our nurse who explained what the fetal care institute was, what they did and how they were going to guide us through the rest of this pregnancy. I had an MRI done and then a ultrasound. We met with neurosurgeons, a fetal care specialist, nurses, a nun, the geneticist, a social worker, our neonatologist and a doctor who's title and name I cant pronounce. Each doctor came into our little "living room" and spoke with us one on one. We were spoken to in terms we could understand, and the doctors never ONCE made us feel like there was no hope. I have heard horror stories from other hydro mommies. Tales of doom and gloom. My heart breaks for them because for us, we made it clear early on we were keeping this baby. We had faith and by the grace of God, we were paired with doctors who also chose to focus on the positive.

The MRI  showed exactly what we expected, and from this, our team of doctors gave us the diagnosis of Aqueductal Stenosis. For the next 3 months, we would come here monthly and meet with our team. Soon after Evan is born, he will be airlifted by helicopter to Cardinal Glennon. This is where his brain surgery will take place.  A shunt will be placed in his brain to drain the fluid. It is our hope that the brain will bounce right back into the space where the fluid once sat. It is our hope that he comes through the surgery like the champ I believe him to be. I hope he flirts with his NICU nurses and that his stay is short. I hope we get him home and his shunt functions just as it should, with no malfunctions or revisions needed. Hope. When dealing with a situation such as this, you can either crumble or you can lean on your faith and be hopeful. We choose to stay strong in our faith. Cardinal Glennon is amazing, it gave us hope that while Evan had a very scary and threatening issue, that he is in the best hands possible  This isn't a place you WANT your baby...but your heart is so thankful to have a team like this, in a hospital like this. Although I have a feeling our journey is just getting started I will never forget what this hospital has done for us. And really, they haven't even gotten started yet.

This will be my last blog post until after Evan's delivery (Tuesday, Nov 6th.)  I will keep you all posted by Facebook and when things calm down, Ill do my best to update this blog.

Much love to you all, and please keep Evan in your prayers :)

Tuesday, October 30, 2012

The diagnosis

Disclaimer: I am not a doctor. This is simply my way of explaining what is going on with EVAN. Evan's Hydrocephalus is caused by Aqueductal Stenosis.

We all have a brain. (Well, most of us do) Our brains produce cerebrospinal fluid .  This fluid flows through our ventricles (vents) and in normal cases, it carries nutrients and proteins to the brain while carrying waste products away from surrounding brain tissue. It is created, it flows down, and out of the brain. No harm, no foul. BUT, for some children (Evan for example) this fluid is blocked by an obstruction in the vent. The fluid cant drain, so it builds up, the vents expand, and this expansion pushes the surrounding brain tissue to the edges of the skull. This fluid is produced daily, so everyday Evan's vents are getting bigger and bigger. The fluid has no where to go, but over. Over into the area where Evan's nice and spongy brain matter should be. At our first ultrasound on July 9th, his vents were 18mm on the left and 21mm on the right. By August 11th they were 23mm on the left and 28mm on the right. I cant recall September's measurements but at last measurement, on October 11th, the left was 28mm and the right was in the 40's. To put this into perspective, his vents should measure 10mm on both sides. Evan's are nearly 3 times larger than they should be on the left, and 4 times bigger on the right. Did I mention this is the good news???? Let me back track a little bit and explain how we got to the "good news" :)

When we were first told something was wrong, we were urged to do an amniocentesis  We were basically told, you need to decide now, because you are currently at 20 weeks along. If we need to terminate, we need to decide within the next 12-24 hours. TERMINATE?? I couldn't even wrap my head around that word. I was NOT going to terminate my pregnancy  I was living in fear that I would lose this baby due to what ever was causing this issue. How on earth could they think I would end my babies life. And then they explained it to me....
There are many causes of hydrocephalus. Spina bifida, down syndrome, and Dandy Walker Syndrome just to name a few. There are also other causes, and with these, the child is not expected to live outside of the mothers womb. Trisomy 18 is the word that stopped me dead in my tracks. Being a sped teacher is both a blessing and a curse. I knew exactly what this meant and I realized that while I wouldn't actively terminate my pregnancy  I had to be prepared for what ever this birth may bring. That his survival may very well be out of my hands. The doctor left mark and I alone in our room to decide what to do. After 20 minutes of back and forth, we both knew we had to do it. Now, I am the girl who cold cocked her doctor with a right hook at age 5, when he tried to give me my booster shot. Needles are not my friend. The nurse kindly asked that I keep my arms down and asked mark to stand back. The pain wasn't nearly as bad as the worry I had over what that test would tell us. We waited on pins and needles for those results. When the initial set of results came back negative for downs and the two defects that are fatal, I felt as though we had won the lottery. 9 days later we got the news that there were no chromosomal defects. The relief I felt that day was unlike anything I had ever experienced  It was like a ton of bricks had been lifted off of my shoulders. I sat on my mom's couch and cried tears of pure joy. Something was wrong with my baby, but it wasn't nearly as bad as it could be. In that moment, I truly felt blessed.

Working through the guilt with Dr. google

Dr. Y told me NOT to Google this. He said it 3 or 4 times in the span of 5 minutes. The last thing Dr. Y said to mark as we left the office was this "Do not let her go home and Google this." This man obviously doesn't know me. How could I NOT search out as much information as possible???? And anyway, tell me NOT to do something?? You better believe I'm going to do it.

Everyday for the next 2 weeks it consumed me. If you were to sit down at my computer right now, and type in any combination of the words "hydrocephalus" "infant" and "fluid on the brain" I can assure you every single link that comes up, 20-25 pages deep, will be highlighted, showing the link had been read. In most cases, read, re-read and read again. The information varies, it is terrifying and scary. It is also uplifting and inspiring. Basically, in a nut shell-there is no way to know HOW this will affect Evan. It is most often said that you have a 50/50 chance. There is 50% chance that your child will have a mild delay, such as a speech delay or a motor delay.  There is also a 50% chance your child may never walk or talk. The pressure on the optic nerves can cause blindness...the fluid may result in so much brain damage that the child is a vegetable. No way to know, no way to tell.  This was week 20 of our pregancy. I had 20 weeks left of having to WAIT, not having any idea if my child would be one of the lucky ones, or if he would be severely handicapped. And this is when it hit me. THE GUILT. Not because I thought I had done something wrong (That was evident in my Dr. Google research) But because I was sad that I would have a special needs child. How dare I be sad??? The reason for this.......

I am a special education teacher. I LOVE my job, I LOVE my kids. I have worked in Special Ed for the past 10 years. I KNOW the love, joy and laughter that fill these children's hearts. I cried when one of my darling dears toured her new elementary school with sass and attitude, when walking through a door frame a year prior had caused major meltdowns. I've nearly done back flips when a certain little girl walked onto a bus for the first time without my aid. I cried the first time one of my little friends put the beginning AND ending sound on a SINGLE word he had practiced for MONTHS. I KNEW these kids, I LOVED these kids. They were my life's passion, and now here I was devastated that mine would carry that label. So often I looked to these parents with awe, amazed at their strength. I had said, on more than one occasion, "You were given this child for a reason." and here I was, worried about what would become of Evan. These children had been given to accountants, Brain surgeons, fast food workers, the unemployed  Here I was, with a degree in education, 4 praxis exams that basically certify me to teach special education at every single grade level...and I was wondering "why me" I worked through the guilt and it was apparent. The question wasn't "why me"" it was WHY THE HELL NOT ME??!!!!

Sunday, October 28, 2012

Everything is going to be okay

When I first found out I was pregnant (exactly 3 months and 3 days from the day we got married) the feeling wasn't at all what I expected. "Ambivalence" is the word I used at the time. I was excited, I felt fortunate....but there was great hesitation in my heart. At the time, I chalked it up to caution. 30% of all pregnancy's end in miscarriage  I knew this, and I wasn't about to get my hopes up. I took it one day at a time, but I just couldn't shake that feeling. "Be cautious, Kim." "You have no idea what is going to happen, Kim" I still wonder if it was simply shock, or if my gut knew what was to come. Regardless, the newness wore off, I made it past the 3 month mark and being pregnant sank into my bones. This was for real.  I was going to be a mom.

On June 27th, Mark and I traveled to our First "real" ultrasound appointment. Being first timers, we had no idea what to expect. We now laugh at the things we said and how completely unaware we were of what was about to happen. The night before, I asked Mark "Do you think something is wrong?" He  said "No, everything is fine." I simply chalked it up to new mommy jitters. I fell asleep giddy over the fact that I would finally know if we were going to have a "Paige McKenzie" or a "Evan Anthony"

First, the good news. Katie (our ultrasound tech) asked if we wanted to know the sex of the baby. DO WE WANT TO KNOW?!!! (By the way, I have no idea HOW people wait until the birth to find out.) I nearly screamed yes, and the warm feeling I got when she said "you have a little baby boy in there" was one of the sweetest moments of my life. The next best moment came when I turned to look at Mark and he had tears in his eyes. You have to know my husband. He is 6'4 and north of 300lbs. A high school and college football player, he towers over most everyone. He looks tough, but is hands down the sweetest & most nurturing man I have ever met. As I laid there, hand in hand with Mark, the ultrasound tech did what I assume they all do. She measured EVERYTHING. Then..she measured everything again. The ultrasound took almost an hour and half.  She spent a great deal of time on his head. I saw the image on the screen and said "He has a big head!"  "You got a big head, big head!" I said to the screen. We laughed, I cant imagine the pain that ultrasound tech must have felt. Here she is, looking a pocket of fluid in the center of his child's brain that is NOT suppose to be there, and these two crazy kids are making jokes. COMPLETELY unaware that their first child has hydrocephalus. Most parents in our situation are urged towards termination. And now she has to go on and pretend like nothing is wrong. She smiled politely and finished up, never making eye contact.

We were handed the printout of his measurements and a few grainy pictures and sent back to my OB's office. As we are walking across the lobby, I stop. As I am reading the measurements, I see that the cerebellum is measuring 2 weeks behind, while his head is measuring 2 weeks ahead. I know this is wrong, but  I am still on cloud 9 from the news that baby Evan is kicking and moving inside of me. I mention it to Mark and he simply says "Ask the doctor about it." We make it into Dr. Y's office and sit down. He asks if we have any questions, and in a hurry to get out of the office and start making phone calls I say "no." Mark asks about the measurements. Dr. Y says it is all in the semantics and brushes it off. Being a special education teacher I know it isn't normal, Mark has already opened the and I ask again....and that is when he says it. "I wasnt going to say anything, but there is fluid on the baby's brain and we need to wait and see what it does. Could it be hydrocephalus? sure. Could it be spina bifida? Yea, but it may not be anything at all"

Dr. Y is talking, but I cant hear anything he is saying.  All I can think is "Oh my God, please, not my baby."

We are told to wait 3 weeks and come in for another ultrasound. I feel as though someone has pulled the rug out from under us and shock, fear and pain are crushing my heart. And all we can do is wait.

We sit in the parking lot and send out texts messages, because calling your friends and family when your hyperventilating doesn't go well.. Our phones peep over and over with "congrats!" "Awesome!" and "so excited for you!" Yet, I don't feel excited, or awesome. I feel devastated, confused and down right scared.

We go to dinner and low and behold...our waiters name is Evan. He is tall, with dark brown hair and brown eyes. Much like I pictured my Evan being someday. I cry as we eat, I cry on the drive home and I cry for the next 3 days. Not at work, or at cheer practice, but at home. Where no one else can see me.

And then I find a blog, written by a mom who's daughter has hydrocephalus  Her daughter is smiling, and laughing. She is beautiful. And in that moment I decided I wasn't going to have a pity party, or cry because things didn't go the way I had envisioned them. I wasnt going be a victim, because I still had my baby. I didnt lose him, he wasnt gone. Where the hell did I get off being sad? Things could have been a LOT worse. I had to be strong for this little man, and crying wasn't going to get me any where. I have always hated weakness, and I've never cared for people who wallow in negative things. Life isn't easy, and it doesn't always go the way we planned. I knew this! I have always taken the bad and made it into something good. I was a firm believer in "Everything happens for a reason." And here I was being a big old fat hypocrite. I quit crying, I quit asking why, and I started praying. God had Evan in his hands, and I took comfort and faith in the fact that everything was going to be okay.

Saturday, October 27, 2012

Our new normal

I never fancied myself a "blogger." To me, blogging seemed like something self absorbed people did. Now, before you throw tomatoes at me, let me explain. My life has been uneventful. I grew up in middle class, 2 parent household. I never wanted for anything and life unfolded much as it does for everyone. I grew up in "beaver cleaver land" as my friend Johanna would say. Nothing extraordinary. Nothing devastating. Life. It unfolded much like everyone else's did. Ups and downs, twist and turns. Did bad things happen? Sure, but bad things happen to everyone. Did amazing things happen? Many. But again...I just didn't see a need to blog.  I graduated from high school, went to college. Graduated. I got a job. I got married. I got pregnant. Pregnancy, now THIS was an extraordinary event for my husband and I, and for our families...but worth blogging about? Noooooo. This is the sort of thing that most everyone does...until one day, we were faced with something that not EVERYONE faces. Suddenly, my ordinary life, became not so ordinary.  In that chaos, in that sad, confusion, fear filled chunk of time...I turned to the internet for answers. Google provided the medical answers, and blogs provided the first hand "we have been down this road" information I had to read.  It became an obsession. That obsession gave me hope, comfort and strength. Because of that, I began to see blogs differently. They were not written by self absorbed people who felt "THEIR" story was in someway extraordinary  They were simply written by people who wanted to share the events that shaped them. They wanted to share their life, and along way, give hope/insight/peace to anyone else who may be facing the same challenges. Prior to Evan, I didn't blog. Prior to Evan, I didn't drink milk everyday. Prior to Evan, I had never religiously taken vitamins.   Prior to Evan, I had never cried so hard that I couldn't breath. I had never prayed with such force  I had never felt my world crash down in the way that it did that day.  June 27th, 2012 was an ordinary day. Sunny and warm, it was the day we would find out if our little peanut was a boy or a girl. It should have been a joyful day, filled with phone calls, congratulations and pure excitement...only it wasn't   It was the day we were told  the news that would change everything I had imagined for my life. Ordinary wasn't ordinary anymore. My life took on new meaning and I had no idea how I was going to breath, let alone LIVE. But I did, and here I am. Here I am blogging about a little boy who isn't even here yet, but has turned my ordinary world into something greater than I could have ever imagined.