Sunday, October 27, 2013

Canon's First DSALA Buddy Walk

As I was scrolling through Facebook last week I noticed a friend had posted something about raising money for the Buddy Walk in Los Angeles! Last year, Canon left the NICU on October 8 and the Buddy Walk was just one month later and there was no way we could make it! I have really wanted to get involved with other parents that have children with Down Syndrome but of course life is always getting in the way. Much of the time Canon is just like any other baby but sometimes there are set backs or missed mile stones and it would be nice to share experiences with people that are going through the same things. When I saw the post about the DSALA Buddy Walk being on October 26th I knew we had to rally whoever was free and go!!

This past week I gathered a couple of friends and family members, we signed up for the walk, made some T-Shirts, came up with a team name, raised over $700 cumulatively and for the first time we got to be a part of an event that supports the larger community of individuals with Down Syndrome! It was AWESOME!

The all day "Buddy Walk" event is hosted by the Down Syndrome Association of Los Angeles and held in the heart of LA by City Hall. Hundreds of families came together to celebrate individuals with Down Syndrome and the JOY they bring to our lives. It's hard to put into words how great it felt to spend the day in a COMMUNITY of families, friends and volunteers supporting people with DS BUT especially having the privilege of spending the day amongst people of all ages with Down Syndrome! Thanks to all of our donors who helped us raise over $700 in just 5 days and thanks to my dear friends and family that helped us to celebrate part of what makes Canon so special!!

"Canon's Kaleidoscope"

Uncle Mike and Aunt Katie with Canon

Friday, December 14, 2012

My sister in law Sarah came for a visit this week and it has been a great time to get some photos of the little one! She is so creative and always capturing cute little pics that put a big smile on my face! What a beauty this little Canon Joy is!
Canon Joy 12-12-12
Photo by Sarah Moritz

"So, you mentioned that presents are a small part of Christmas? I think I'm cute enough to qualify for a big ol' stash!"
Photo by Sarah Moritz

Tuesday, December 11, 2012

Worriers's a real thing!

Sometimes you just have one of those days....and YES, I do want to complain about it! Yesterday we found a hole in our wood floor that could indicate termites, today our car had to be towed to the dealer for mechanical issues, this afternoon we got a red light ticket in the mail with a whopping $490 fee for doing a rolling stop for a right on red AND to top the day off our dog had to undergo a SUPER groom and flea bath because she somehow ended up full of those pesky little buggers!

It was definitely one of those days that will make you feel like you could have at least two glasses of wine and not feel bad about it! I think I can safely say that I am ready to say Goodbye to 2012 and Hello to 2013. 2012 has been one of the most challenging years of my life and sometimes I just have to remind myself to put things in perspective. I don't think it's a stretch to say that often times life will just literally kick you in the ass and the stress you feel in those moments is so intense it feels like it will take you down! I've certainly been no stranger to those moments this year.

So, the day is winding down and I am thinking that there are two things I need to get better at. One is prayer and Two is reading scripture. It's funny how I always try to alleviate stressors myself through deep breathing and quiet, taking a "time out" and slowing down for a couple of minutes (which, if you know me is not something I usually do..I don't really go slowly...anywhere.....ever HA!). All those things are great but usually the stress is still there. Tonight, I read Matthew 6:25-27 and it REALLY resonated with me. "Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air; they neither sow nor reap nor gather into barns, and yet your heavenly father feeds them. Are you not of more value than they?And which of you by being anxious can add a single hour to his span of life?"

That's pretty powerful stuff. First of all, totally TRUE-we cannot add a single MINUTE to our lives through worry and really, what does worrying solve? NOTHING! I am a big worrier, I am sure my fellow worriers can relate, I almost feel like if I don't worry about something NOT happening and then it does happen then I didn't worry enough to prevent it....WAIT...Who's on first?? Seriously, it is SO ridiculous! I just googled worrier to make sure I was spelling that right and Worriers Anonymous popped up...clearly, this is a problem with a broader audience then even I expected.

Ok, so back to the verse. We're told that birds neither sow nor reap and yet our Father feeds them and of course we are much more valuable then they. I was reminded once again that I cannot change anything by worrying and God is sufficient for all our needs. That's a pretty tough concept to grasp in the digital age where self help is around every corner and just a few clicks away on your MAC or PC! We've got these every day stressors...learning how to be parents, things going wrong with the car and house and trying to balance working with being good parents and then there's the under current of the BIG SURGERY looming for Canon in January.

2012 has been a little rough but it's good to take a step back and revel in all of the GOOD God has done! He brought our sweet Canon through so many challenges....and yes, some of them I did not have the foresight to worry about! Now, we are blessed to wake up to this smiling face every morning!

 Canon Joy is doing awesome and bringing us happiness, laughs, love and joy every single day! On January 18 she'll go in for open heart surgery at Children's Hospital in Los Angeles and although we are nervous we know that God has His hand on her and will bring her through this just as he has brought her through every other challenge she has faced! YUP, she's a rock star!
So what's REALLY important? God, Family, Friends, Living in this wonderful FREE country and taking time every day to ENJOY your kids. That last one is much harder then it sounds! You want to enjoy and soak up every minute but life just gets in the way. I try to remind myself everyday to just slow my roll and enjoy Canon discovering new things, like eating rice cereal for the first time!

Saturday, November 17, 2012

Where does the time go???

I've decided not to try and catch up! This is Canon Joy in pictures.....
We've Come a Long Way Baby!
Canon Joy 3 days old
Canon Joy had her first heart surgery on August 24th, 2012. She was 2 1/2 months old and she weighed 5 pounds.
Getting Some Snuggles with Daddy before Surgery

Getting some Grammy time before surgery

Papa visits with Canon before Surgery
This is the first day Canon could Breath
Canon ended up having a PDA ligation (basically, they closed of a duct that was open and letting blood flow from the pulmonary artery into the aorta) The surgery went great but afterwards Canon got a pseudomonas infection from the tubing used to intubate her. The infection caused her throat to swell almost completely shut and she could not breath. The doctors gave  her round after round of steroids followed by breathing treatments every hour, it was painful to watch her struggling to breath for over 13 days......this little girl is my HERO! Her airway was literally the size of a needle, she dealt with that for 13 days before they figured out what was going on and she got some relief!

As soon as Canon was on the mend we were able to move her to our home hospital, Queen of the Valley in West Covina.
Canon Joy spent a total of 115 days in the NICU; 3 months at Children's Hospital of Los Angeles and 1 month at Queen of the Valley in West Covina
On October 8, 2012 Canon came HOME.
Yes, we're aware that our daughter resembles a try taking a red head out in the sun for the first time!!

Wednesday, July 25, 2012

One Month Old!

I started writing this on Canon's one month birthday and I didn't want to miss the milestone so even though she'll be six weeks this Saturday I decided to post it anyway! 

I can't say I wasn't hoping for a less tragic looking photo for my daughters one month birthday but life is what it is in the NICU! As you can see Canon's red hair is really making an appearance in this photo! She is weighing in at 3 pounds 9 ounces and is a little over 15 inches long. She's a hot body in her current accommodations, the NICU isolette, so we still can't dress her up in any clothes but I am sure the day is drawing near where she will be one well dressed Children's Hospital guest! 

Like any preemie in the NICU Canon's progress has been slow and at times we take one step forward and two steps back. Last Sunday we learned that Canon no longer had the coarctation of the aorta that she was originally transferred to CHLA for. This is a HUGE answer to prayer, the coarctation is an urgent issue and typically requires surgery immediately. The doctors were monitoring Canon daily and doing echocardiograms every couple of days to make sure she wasn't going into heart failure and hoping she could get to 4 pounds before surgery. As it turns out, I believe God healed her from that and now we have more time for her to grow for the other surgery she needs. She will still need open heart surgery to address the hole between her right and left ventricle and they'll close off another hole straddling the aorta at the same time. Every little milestone is so exciting and we can't wait to bring our little one home!

Thursday, July 5, 2012

It's Confirmed....Canon is a Super Hero!

Photo by Kevin Still
When I was little I had a lot of little dramas I used to star in, little plays I made up in my head where I was a Russian Refugee running from the gestapo,  Nadia Comaneci scoring the first perfect ten on the uneven bars; and of course one where I was WONDER WOMAN! I am proud to report that I have retained one super power from my early years and my daughter has picked up right where I left off. Today I went in to see her and the cardiologist said, holy cow! She is really gaining weight! It's like you have super breast milk! She's 3 pounds 4 ounces today. I DO have super breast milk.....oh yeah....and God working miracles so our daughter can just rock this heart surgery right on out! Little Canon is just surprising us everyday and we are not the only ones! This angel faced little red head is gaining weight like a champ and we are so in love with her! 
I know God is powerful, He can do anything. When He works miracles for your child though it just feels really unbelievable! I just cannot wait to see who Canon will grow up to be and what kinds of things she will do! And don't you just love those little almond shaped eyes? So exotic! I'm getting to hold Canon for about 2 hours a day now. She's gaining weight and seems to be holding her body temp pretty well. She's been a little hot lately so no clothes yet but I am hoping to begin playing dress up immediately! I think she really loves her mommy time, skin to skin as they call it in the hospital but what I have been really amazed by is her connection with her daddy! My friend that's an audiologist told me yesterday that babies can actually hear their dads voices better in the womb because of how low they are. It is amazing how if she is crying or upset and Kevin starts to sing to her or talk to her she just stops and stares at him or calms right down. It is very heart warming, like my very own home made Hallmark Sunday Night Special. I love it! Every daddy should have a daughter that gets him wrapped around her little finger!
Photo by Kevin Still
Canon's First Little Booties
Photo By Kevin Still
Hand Modeling by Sarah Dykema

Tuesday, July 3, 2012

Welcome to the World Canon Joy

Welcome to the World Canon Joy Still

One June 16, 2012 at 8:11AM our beautiful Canon Joy entered the world kicking and screaming! I do not say that figuratively! I ended up having a C-Section at 34 weeks because Canon had been diagnosed with severe intrauterine growth restriction, she was the size of a 26 week old baby. I was surprised by how quickly the whole C-Section process goes down! One minute I was on the table sitting up, getting the epidural and literally 5 minutes later I was flat on my back and the doctor was saying......"Oh, she's just gonna jump right out of here!" The NICU team and neonatologist had met with us the night before Canon's birth and told us they would have a crash cart set up outside the delivery room. They said, "now don't expect her to cry or move, don't get nervous if you don't hear anything, we're going to take her right outside and work on her and if she is stable we'll bring her in for a picture. She's really little so sometimes it takes us a couple of minutes to get the baby going." 

The night before Canon was born I don't think Kevin or I slept more than an hour. I prayed constantly the whole time that my daughter would come out screaming. When the doctor popped her over the curtain after he pulled her out, her mouth was wide open, she spit some junk up on my face and let out a tiny little cry. It was the most beautiful sound I have ever heard and I hope I never forget it! In that moment I knew that God had answered the prayers of the many that have prayed for Canon's safe arrival over these long months. The long hospital stay prior to her birth, all of the scary doctor visits, all the moments of uncertainty and worry culminated in the sound of that little lady entering the world. The neonatologist came in a couple of minutes after Canon was born shaking his head with a huge grin on his face. He said, "Wow, sometimes you prepare for everything and nothing happens! Your baby is doing great! She's breathing room air and has an Apgar score of 9! We're going to bring her in in just a moment and you can  see her." 

Our tiny Canon weighed 2 pounds 8 ounces and was 14.75 long. She is tiny but MIGHTY as my mom would say. When the nurse brought her in and put her next to my face I could not believe there could be a face so small! She was just perfect! Perfect little button nose, we call it the Moritz nose because everyone in my family has it and we get it from my dad. Everything else on Canon so far looks like her dad! She is Kevin's little mini me from the red hair to the little bow lips, even the same chin! I could see she looked just like him from the 3D ultrasounds but to see it up close and personal is awesome! She has these super long fingers, long arms and long legs. She really just looks like a perfect baby but a micro version! 

Canon was moved to Children's Hospital in Los Angeles when she was five days old. When she was born the pediatric cardiologist discovered that her aorta was narrow, to narrow to pump blood to the rest of the body on it's own. Amazingly, the hole that is in every baby's heart, called the PDA that closes at birth was still open allowing the aorta to the pump the blood it needs to the rest of the body. Her PDA has thus far remained large, normally they wouldn't feed a baby that has an open PDA but rather close it up prior to feeding. In Canon's case we need her to eat so she can get larger because the surgery on her aorta will be an open chest surgery. The doctors have been walking a fine line, increasing her feeds every other day, slowly, so she can gain weight while not compromising other systems. It is a complex process. CHLA is an amazing hospital, Canon is getting great care. 

Canon is a miracle, our own little slice of heaven on earth. Despite all of the miracles that have already been granted, I want more. I want to bring my baby home, not visit her in the hospital every day. I want to be able to nurse her myself, not pump milk every two hours for a nurse to put into a tube inserted in her nose that goes into her stomach. I want to be able to dress my baby in little clothes and put her to sleep at night and I want to know that when she's awake, we are the faces she sees, not strangers. It's not easy being a "Stay at Hospital Mom" and sometimes I feel like I've had just about enough of all of the character building experiences life has thrown my way. But the bottom line is, Canon is in God's hands. He has put her in the care of wonderful doctors and nurses that are making sure she comes home to Kevin and I, and she will. Eventually, this stay in the NICU will be like my stay at the hospital before I had her, just a distant memory. I know things could always be worse and Canon is really doing amazingly well, God gives us each what we can handle. My sister in law compiled all of the pictures and videos from Canon's first week of life and made us the beautiful video of Canon I posted. We are immeasurable blessed to have this little one in our lives and we are incredibly grateful for all for all of the love, support and especially all of the prayers we have received and continue to receive!