Thursday, January 26, 2012

Our Story

I can't say I enjoyed being pregnant. It consisted of a lot of body aches, a lot of heartburn, and a lot of .. growing. Other then being uncomfortable I had a healthy pregnancy. It wasn't until I was 33 weeks that issues arose. During a routine check up I found out I had low amniotic fluid. They scheduled me in for another ultrasound in 3 days.. saying if my fluid dropped again I would be induced. I was NOT ready for that. I drank tons of water hoping to get my fluid up.. and it worked. The next four weeks consisted of weekly ultrasounds and non-stress tests every 2 days. It was just back and forth, back and forth. By the time I was 37 weeks I was almost happy to hear that my fluid had dropped again and they were going to induce me. I was exhausted and so ready to get my little guy out!

I won't get into all the little "wonderful" details.. so let's skip ahead 27.5 hours, 4 epidural top ups and a fever later.. where I give birth to my beautiful baby boy, Ryker Matthew at 9:11pm on December 20, 2011. I don't know if it was all the commotion.. or all the drugs.. but as he was placed on my chest I vaguely remember saying "can you talk him, hes breathing funny".. something along those lines. So they took him and assessed him as I waited patiently to hear "Don't worry Adrianna, He's perfectly fine." Instead it went a little more like "sometimes all babies need is skin to skin contact, im sure he'll be ok."

Cuddling Ryker for the first time was incredible. I was so overwhelmed with emotion. I couldn't believe Brad and I made someone so perfect. It was surreal. By the time we got to leave the labour and delivery room, and go to our room in the mothers and newborns ward, we were exhausted. Once we got all settled in a nurse came in and told us she was taking Ryker for routine bloodwork because I had the fever during delivery.. they just wanted to make sure he was okay, she said she'd bring him right back. Brad was so tired, we both decided it would be a good idea for him to head home and get some sleep since we lived so close to the hospital. Shortly after he left, around 1:30am, I fell asleep.

I woke up and looked around the room.. no Ryker.. no nurse.. I looked up at the clock... 3:30am. I immediately thought the nurse stole Ryker. I was convinced she snuck into the hospital, stole a nurses ID card.. and stole my baby. As I was panicking my phone rang. It was the nurse looking for brad. She said that Brad needed to get back to the hospital because the doctors in NICU needed to talk to us. I started panicking more. I didn't know what to think. My body began to shake, I started to choke. I called Brad, telling him what was going on and that he needed to get here ASAP.

Suddenly the room filled with doctors and nurses. My eyes began filling with tears. This couldn't be good. They didn't wait for Brad to get there. They just dropped it on me like a ton of bricks.

"while examining Ryker we noticed he has a very distinct heart murmur, we're certain he has a heart defect.. we're just not sure how serious it is"

My world started crashing around me. The room started spinning. I just wanted to scream "Why me?! Why us?! Why Ryker?!"

They told me they'd bring me to see him. They got me a wheelchair and rolled me into NICU, right up to a tiny little bed where a baby.. my baby.. was surrounded by doctors, and attached to more tubes than I have fingers. It was the worst moment of my life. I will never EVER forget the feeling of my heart breaking looking at Ryker. I will never be able to erase that image from my brain. Thinking about it now, I feel sick to my stomach. I wouldn't wish that moment on my worst enemy.

The transport team arrived, and starting prepping Ryker for his trip to the Stollery Childrens Hospital. I couldn't speak, I couldn't think, I just cried. We couldn't go in the ambulance with Ryker so we took Brad's truck. The hospital lent us a wheelchair, I was still attached to my IV and my catheter. Still in a hospital gown. I was allowed a "pass" to leave for a few hours. Im so thankful I was able to do that.

Once we got to the Stollery we made our way to NICU. A million thoughts were running through my head. At that point remaining positive wasn't an option or me. I kept thinking "what if he doesn't make it, what if hes not okay." we were so thankful for our families who came to give us support that day. I know that day would have been a lot harder if we didn't have that support.

Ryker had a lot of tests done that day. After what seemed like an eternity of tears, and heart ache we were finally approached by the cardiologist. He took us aside and explained to us that Ryker had transposition of the great arteries, an ASD, a VSD, and pulmonary stenosis. At that point we were looking at the simple arterial switch operation which would just simply be switching the arteries so they were functioning in the heart correctly. Things started to look up. I did a lot of research on that procedure and found out the success rate was 97-98 out of 100. The chances were looking amazing!

The next day things started to look even better. Ryker was extubated and breathing all on his own! We got to hold and cuddle him, they were even saying he may get to come home and get stronger before his first surgery because he was so stable. We were ecstatic! It was hard to leave him at the hospital and go home, but knowing he was so stable.. and the fact they would call if anything went wrong.. made me comfortable going home and getting some sleep. I couldn't wait to get back there the next day and spend the day cuddling him. To my surprise when we got there he was on oxygen. I had another mini break down, thinking this was a bad sign. The nurse assured me he was still stable, he just needed the extra help right now because his sats dropped when he got upset. The next week seemed a rollercoaster of oxygen levels. They'd turn them up, they'd turn them down. They kept saying if he could be off oxygen and keep his saturation levels up we'd get to bring him home. While I longed to have my baby boy at home.. I was also scared. He was having so much trouble keeping his saturation up at the hospital.. what would it be like at home without the monitors.

Around the 26th of December we met with one of the cardiologists to explain further Rykers condition. This is where we learned that he was not a candidate for the Arterial Switch Operation, and he would need the Rastelli (which is placing conduits in his heart to act as arteries. The conduits don`t grow with the body so Ryker would need surgery every few years as he grows out of it) We also learned that in a few days time Ryker would be getting a BT shunt placed in his heart as a temporary fix until hes strong enough for his rastelli. While it felt good to know what lay in Rykers future, I was so scared. Anything could happen.

On December 30th, after 11 hours of my poor boy not being able to eat anything he finally went for surgery. I felt so optomistic. I almost didn't even feel scared. It was a very quick surgery, only about 2 hours. We saw the surgeon come down the hallway. He said "Can I speak to Ryker's parents over here for a second." That is when my fear kicked in. I didn't want to hear what he had to say, I thought for sure it would be bad. ..but it wasn't. He told us Ryker's surgery went very well, with no complications. We were so happy. The next hour seemed the longest. We weren't able to go see him until they had him back in NICU and all settled. I kept making Brad go ask if we could see him, each time they would say "another 10 minutes". I was getting so restless! Finally we got the okay.

I knew that it would be hard to see Ryker.. But I didnt think it would be as hard as it was. He looked like a diferent baby. Seeing my precious little boy on that bed gave me flashbacks to the night he was born. I immediatly broke down. I sat in a chair away from Ryker and just cried. He had two IV`s in his head, one in his hand, one in his foot, a breathing tube, a feeding tube, an arterial line and a chest tube. I started to notice the nurses mumbling that Ryker was losing a lot of blood. They frequently had to drain his chest tube. When the blood kept coming it was decided Ryker would need blood transfusions. and thank god for them. If nobody ever donated blood I don't think Ryker would be here today.

Even with the blood transfusions Ryker kept bleeding, and I kept crying. The nurses all looked so worried and scared. At that time I had been staying in a parent room in the back. I walked back to my room, got down on my knees and prayed harder than I have ever prayed in my life. I begged god not to take my son, it wasn't his time yet. I told him I would be the most incredible mom I could if he just let us keep Ryker. After 20 minutes of praying through sobs, I walked out to the unit to the nurses telling me the bleeding had slowed down substaintially. I have never felt such a strong connection to god as I did that day. I thanked him for listening to my cries. To this day, and for the rest of my days, I know that Ryker's bounce back was all in the hands of god.

The next few days were amazing. Ryker was recovering so quickly and so amazingly. by the third day of recovery he was breathing all on his own! without oxygen! I couldn't believe my eyes. Each day got a little better, and by January 7th (my due date!) we were ready to go home.

I was overwhelmed with excitement, fear, and anxiety. I couldn't wait to get my baby boy home for the first time, but I was also worried too. At home we wouldn't have monitors or nurses. Just Ryker, Brad and I. Ryker was 2.5 weeks old at this point, and his whole life he had constant care. Not only would I have to go home being a first time mom, but I was also the mom of a heart baby. We recieved lots of teaching and training on how to take care of Ryker. It eased the fear a bit. When the doctors came to do rounds at 9am they noted that Ryker had still been losing weight, but the doctor didn't seem concerned. He assured us it was still so soon after surgery and that Ryker would bounce back.

It was fantastic to have him home, although it did consist of a lot of checking to see if he was breathing.. which I still do.. just not as much. We finally got to do family things in our own home. Brad showed me in those days what an amazing father he is, and how naturally it comes to him. He is my saviour in all of this, he has strength for the both of us. If I didn't have him I don't know where I'd be.

On January 11th we walked into the office of Dr. Dhunnoo for Ryker's first pediatrician appointment. I was looking forward to meeting him, but also nervous because Ryker had still been losing weight. When Dr. Dhunnoo came into the room he started with me and Ryker's history and asked if I had any concerns. I mentioned to him about the weight, as he was now over 300 grams below birth weight. After a quick examination Dr. Dhunnoo turned to me and said "I really don't think they should have discharged you when they did. They didn't really find out if Ryker can gain weight at home. I'm going to call the cardiologist now.. but I think Ryker should be readmitted."

My heart sank. I just wanted to scream at him saying "you can't take him! I just got him home!! you can't do this to us!!". I had such a resentment towards him for wanting to send us back. I thought he wasn't giving Ryker a chance, and that Ryker was still bouncing back from surgery. He'd be fine! Looking back on it now i'm so happy he readmitted him. When I look at pictures of Ryker's first 5 days home I see how skinny and tiny he really was. I didn't notice that then.

We were at a different unit when we arrived at the hospital. Pediatric Cardiology. It breaks my heart how many children are there. No child should ever have to go through this.

The next couple of days were a testing period. We had to figure out what was going to help Ryker gain weight. A combination of breast milk and high calorie formula mixtures. Each morning I would be so excited thinking "he ate so well last night! he must have gained weight!".. but each morning I was disappointed to see that he had dropped more. By the 4th day of weight loss it was decided Ryker would need a feeding tube. I was upset at first.. I didn't want Ryker to have to come home with the feeding tube. But as the day wore on I realized this was best for him. All I wanted was for him to be growing and healthy.

The next morning to my delight the scale said that Ryker gained 95 grams! I was so happy. I immediatly called Brad to express and share my happiness with him. I was so excited to see the doctor that day. For the past few days I had dreaded seeing him because I knew with Ryker still losing weight, there wouldn't be good news.

When he walked into the room he knew by my face that Ryker had gained. The nurse looked at him and said "I have never seen a mom jump so high from seeing a weight gain" and its true. I did a jumpy, happy dance. Being a mom of a sick child, its little milestones like this that make you jump for joy. (I still jump for joy everytime Ryker poops because it means his food is going through his system correctly. ) On January 16th we were able to go home. Of course it had to be the coldest day all winter.. but I didn't care. I just wanted to get my sweet pea home.

Ryker has now been home almost 3 weeks and hes doing fantastic! He's up to 8lbs 10oz as of Thursday Feb. 2, and he's gaining the perfect amount of weight every day. Slowly but surely I can see his face fill out, and his legs getting chubby. In no time he'll be a chunky little monkey. Our story doesn't end here. There will be more tests, more scares, more surgeries, more joys. Ryker has taught us to live life to the fullest. We never take a moment for granted with him. He's our little miracle. I look forward waking up to his bright eyed smily face everyday. I may be bias, but I'm pretty sure I'm the luckiest mom in the world.