Friday, May 11, 2012

"it will get better"

It's been a long time and we've been so busy. If you've been following our fb page "Rykers Heart" then you will know mostly everything that has gone on. Long story short..

We were at a physio appt where we learned Ryker will need skull surgery because his skull prematurely fused.. While waiting to speak to a neurosurgeon, Ryker had laboured breathing and they had to call code blue. it was not an actual code but they were scared. They wanted to keep us overnight just to watch him. They did an echo and found out he has pulmonary hypertension.... yay. more problems.

In the next few days it was decided to do a cath to figure out the reason why there was hypertension. While in the cath lab they found the issue was a narrowing of the pulmonary artery so they put a stint in and it has seemed to fix everything!

It's been a month since the cath and Ryker has been amazing! We don't see cardiology until August which is incredible considering we've been going every 2 weeks!

Ryker is reaching all his milestones appropriately. He is getting two teeth, has started rolling to his side, has amazing head control and is discovering his feet! Yay Ryker!

I noticed in a previous post I wrote how Ryker has a fixable heart defect. I feel I need to elaborate on this. CHD is not fixable or curable. To have a fixable heart defect it means one that can be manipulated through surgery to work properly, rather than get a heart transplant. In Ryker's case.. one of his defects - Pulmonary Stenosis - can never truly be "fixed". It requires tubes in the heart to "buy" time until he grows out of the tube, in which case it will need to be replaced. That is a lifetime issue for Ryker. CHD is a lifelong disease.

I remember 4 months ago people always said "it will get better". I would sit there, screaming in my head at them saying "how will THIS EVER GET BETTER". How could they possibly watch me sit bedside of my sons little newborn hospital bed and tell me it will get better.

Now I look back and think.. "wow, they were right". It did get better. I feel bad for being so angry with people who were just trying to console me. For once in Ryker's short life I don't live in constant fear that I will lose him. I've learnt that there are some things out of our control. All I can do is put my faith in God's hands, and enjoy every minute we have with him. Ryker is a miracle. Our miracle. I would not change this life for anything.

Thursday, March 15, 2012

Road to recovery

It is now 8 days since Ryker's surgery and he is recovering beautifully! He is off his pacemaker, and most medications. His heart is still showing a bit of blood surrounding it on his chest xray, but he is on lasix to try and get rid of that extra fluid.
They have stopped his around-the-clock adovan and are only giving it to periodically to decrease the chances of withdrawl symptoms.
My handsome boy gave me a big smile yesterday.. the first since his surgery. When I looked into those big brown eyes and saw that big toothless smile I just knew.. everything is going to be okay.
We are now in the ICE room in the peds cardiology unit.. one step closer to home. I am so proud of all the hurdles my boy has overcome. He is my hero!

Saturday, March 10, 2012

The big surgery

It's been a while since I have updated but better late than never!

On February 21, at an appointment with Dr. Dhunnoo it was decided Ryker needed to be readmitted due to heart failure. While I had knew this was coming it was still upsetting to have to go back to hospital. He hadn't been acting like himself so it was almost a relief to get the problem sorted out.

We had to go through emergency around 1130am and it wasn't until 8pm that we finally got a bed in peds cardiology.

The next few days consisted of tweaking Ryker's medication to get everything at a good level for him. He did desat a couple of times each night when he slept but nothing too alarming.

Finally they decided that his medication was just right, and on February 24 we got to go home. I was so excited! Just in time for grandmas baby shower the next day!

We had a great time at the baby shower, it was so nice to show Ryker off to people that haven't met him.. he sure is loved!

The next day Ryker slept ALL day which wasn't like him. I even had to wake him for feeds which NEVER happens. I knew this was a sign of heart failure. We played it by ear and kept a close eye on him. When Monday evening rolled around and I noticed his nose starting flaring again (another heart failure symptom) I decided to call the cardiologist on call and see what he thought we should do. He told us it sounded like Ryker was maybe getting a cold, so to keep an eye on him and if he got worse, or not better to bring him to emergency.

After that Ryker perked right up so we thought it would be fine to keep him home for the night and see what homecare had to say the next morning when they came to visit.

After a checkup and a long talk with Lois, Rykers homecare nurse, we decided the best thing to do would be to bring Ryker to the hospital. I am so glad I did because everytime he would fall asleep he desatted to the 40s-50s and required oxygen.

A few weeks beforehand his cardiologist told us that they wanted him to go for his surgery way sooner than we had thought because his heart failure was getting worse, so after two trips to the hospital in one week it was decided that Rykers name would go on the surgery list, and he would stay in hospital until his surgery.

Within the next few days we learned that Ryker was to have surgery on Monday March. 5. As the date grew closer, I grew more anxious. I was so excited that he was getting surgery finally, but so worried because he was still so little and the risks were higher.

Monday morning rolled around and we found out the surgeon had to take an urgent case first thing so we were bumped to the afternoon. Then 2 oclock rolled around and we found out the surgery was cancelled. I was heart broken and frustrated. I felt like they didn't think he was important.. but I know that was not the case. The surgery was now to be on wednesday.

Wednesday morning rolls around and we found out the surgeon had to take a quick urgent case first thing so we were bumped up AGAIN. I was so frustrated. I thought we would be cancelled again, but to my surprise at 10am they told us it was time to go.

There was lots of tears, kisses and cuddles. I got to ride with Ryker in my arms on a stretcher down to the pre-op holding room with Nana, Brad, Ashley, And Cara following close behind. We met the nurses and each gave Ryker one last kiss before they whisked him away.

Walking towards to PICU waiting room I felt good. I just knew his surgery would go amazing. There was no doubt in my mind.

The next few hours seemed to fly by surprisingly! Dr. Rebeyka came out and motioned for me and Brad to go talk to him. I was so worried because I thought the surgery was going to take way longer.. but I didnt have to worry because he told us the surgery went as well as he could have hoped. I started crying, thanking him over and over again. He told us not to jump for joy just yet because the first 24 hours after surgery are crucial and anything can happen... but he really didn`t think there would be complications.

We were all so excited. Hugging and crying happy tears. I couldn't wait to see Ryker!

We were anxiously waiting for them to wheel his bed past, and when they finally did I jumped straight in the air and headed towards him. He looked so good!

For the next hour they needed to do some post op tests and we had to wait in the waiting room. Finally a nurse and called for us. We stood up and rushed in the unit to his bedside.

There were lots of doctors around him, deciding what the medication levels should be at, and just generally watching over him. Just then a doctor noticed a bad heart rhythm on the monitor, so they quickly hooked Ryker up to a pacemaker. I knew ahead of time that some children require a pacemaker for a little while after heart surgery so I wasn't worried.

Suddenly Ryker's blood pressure started to drop. The doctors spent the next five minutes tweaking his medication and the pacemaker. My guy fought, and he fought hard.

Unforunately he couldn't fight anymore and the doctor said "okay, this is real. grab the crash cart"

I jumped out of my chair and ran to the corner of the room and collapsed. I looked up to see doctors swarming around Ryker, and one woman giving him CPR. My whole world was crashing around me. I started having an anxiety attack.

A nurse came, grabbed me by the hands and said

"He is very sick, and we're doing everything we can to help him. You need to take deep breaths and I'll take you to the quiet room and call whoever you want me to"

I managed to choke out "I need my mom and my best friend".

The door was open when we were walking to the quiet room and my mom and Cara saw the nurse holding my hands as I struggled to breath through the tears. They both jumped up and ran to me. In the room the nurse explained to them what had happened and then left us to go see how Ryker was doing. I sat staring at the wall, not wanting to believe this is true but no matter how hard I tried to forget it, the words "you're going to lose him" would not leave my brain.

We called Brad's mom, Lori, and his sister and told them they needed to come back to the hospital as soon as they could. When they got there we all just sat in silence, waiting to hear news.. any news.

After what seemed like forever the doctor came in and told us they did CPR for 6 minutes and gave him one shock before he came back spontaneously on his own. I know the angels told him it wasn't his time.. he needed to stay with us. He explained to us that Dr. Rebeyka was on his way back to the hospital and they were going to open his chest to relieve the pressure on his heart.

We got to see him one last time before we left.. and he looked good.

We later found out that a coronary was compressed restricting bloodflow to his heart. We were told he would probably have a rough night but at least he was stable!

The next day we got up bright and early and headed back to the hospital. Ryker looked so amazing! They told us he had a great night and that to look at him now, they would never think he went into cardiac arrest the night before.

We were so happy to hear that! I could not stop smiling, my little fighter wouldn't give up.. he cheated death and he made it through.

Today is day 3 of his recovery and he is doing amazing! They have already closed his chest and have plans to extubate him tomorrow. He is completely off Epinephrine and there are weening him off his other drugs too.

Ryker is my hero, from now until forever. I have never known someone so strong in my life. We cherish every moment we have with him because we never know what tomorrow will bring, but after witnessing him fight for his life there is no doubt in my mind he will get over these hurdles and we'll be able to go on with the rest of our lives.

"Live every moment like its your last"

Saturday, February 11, 2012

CHD Awareness Week

Congenital Heart Disease is the most common birth defect occuring in about 1 in every 100 babies born. It is also the leading cause of death due to a birth defect. I don't think you really realize how real these statistics are until you have a heart baby. I always knew that CHD was out there but it wasn't until our stay in Pediatric Cardiology that I realized how common it really is. There are so many heart defects that make up CHD, some worse than others. There are fixable heart defects.. which Ryker has (and I thank god for that everyday) and then there are defects that aren't fixable requiring a heart transplant.

February 7-14 is CHD Awareness week. All i'm asking is for each person who reads my blog to tell 3 people about Congenital Heart Disease. Just by promoting awareness we can encourage scientific research, encourage family and research funding, and provide support for those families who have children with CHD.

Ryker is a part of a study done by the Glenrose Rehabilitation Centre. They watch Ryker at different points of his life to see how he is developing physically, and mentally, and to check his hearing. If this study can save one child in the future from having to go through what Ryker has, and will go through, I will be happy.

For those who wish to go a step further and donate I would not only appreciate, but all the other families living with CHD would too.

Like I said, I'm only asking for awareness. By passing the word along you ARE helping greatly! If you wish to donate or not, that is entirely up to you. God Bless you!

On another note, I should add an update about Ryker! :)
He met with his pediatrician on Monday Feb. 6 and I'm happy to say he was up to 8lbs 14oz! We get him weighed again this Monday coming up and fingers crossed he's well above 9lbs! :)

He has not been feeding through his feeding tube at ALL for this entire week, and is taking bottles like a champ. We only use the feeding tube for his blood pressure medicine that he loves to spit out when we give it orally. (I would too, i bet it tastes super yucky!)

We're really hoping he can get the tube out soon! especially since we're not even using it.. Medicine will be a pain in the butt, but thats fine! The tube is much more of a hassle then Ryker not liking his medicine.. before long he'll have his surgery and won't need medicine :)

On the topic of surgery..
Because Ryker is in such heart failure (sounds scarier than it is! his heart works very hard making it hard for him to breath normally. He breaths very fast, which tires him out. this is considered pretty substantial heart failure) the Cardiologist is thinking he'll need his surgery much sooner than we thought. The cardiologist team was supposed to get together yesterday morning to discuss Ryker's case and what they should do next. We should find out on Thursday.

What we do know is he's getting a cath sometime this month.(which is inserting fluid into his heart to light up on the x-ray showing his blood flow) After he has his cath we should know when his surgery will be. I'm excited it may be sooner so we can really start our lives, but i'm also worried. The younger the child the higher the risk. But if this is what Ryker needs, than it is what it is. Keep your prayers coming. He's such a strong little guy.

Thanks for reading, I'll keep you posted!

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.