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!