Thanks be to God..

This has been the most harrowing experience of my life. I can't possibly put the range of emotions I went through this day into words. All I can really say is that I am soooo glad it is over, and that he is doing extremely well. Our arrival time at Cheo was 6:30 am. Nathan was whisked away at 8am. We got a chance to say our goodbyes, he was full of smiles and giggles. I just couldn't cry, he was so happy- I didn't want to upset him with my tears. I didn't want to let him go.. The helplessness was so overwhelming, and the tears came once he was out of view..


Our nurse Tara, kept popping in with updates every hour. Surprisingly enough it did not take long for them to get all the lines hooked up. I expected it to take longer, it is always an issue to draw blood from our little monkey. So soon enough the repair was underway. I tried to think of anything else, but of my son on the operating table. Admitting shocked us with a gift for Nate, a big giant frog. My brother and husband kept doing odd things to him every time I left the room and it was a nice distraction. Every time Tara came in with an update I hugged the frog and was oddly comforted. It seemed to take forever. You know how time just stretches sometimes?? Around 2:30 they were done. Nathan did really well, and the repair was a success. Tara gave us a tour of the ICU before Nathan was brought in. It was really hard on Brian. We were shown all the machines our son would be hooked up to. Has Tara was explaining them all to us, Brian noticed the little girl with the scar on her chest in the next bed. He nearly fainted, it was just a little much to take it all in. We wheeled him out and he laid down for awhile. Soon Nathan was ready for us to visit. I don't think you can ever be ready to see your child after such a major surgery. We went in, Brian sat in a chair a distance away. I had a chance to touch my baby and to be reassured that he was indeed okay. From that moment on I rarely left his side for the rest of his stay. Cheo provided me with a parent room to stay the night, when he was in ICU. Within two days, he was transferred out of ICU to the surgery recovery wing. He had one rough night and the rest went so well he was quickly released. It is so good to be home! The whole team at Cheo is amazing to say the least, they made our lives a little brighter during this difficult time. They will always hold a special place in our hearts.



Day two in ICU - One less machine
First visit with his big brother and sister.
His first smile after surgery was at their visit.
He was very happy to see them.






I covered his wall in his room with all the prayer hearts from our church and with the get well cards from Mykaela's classmates. Nathan's godmother made sure we had lots of support and organized the whole "heart" support from our church. The nurses were convinced all this love is what made Nathan heal and do so well..He was out in record time.




Nathan enjoyed gazing at all the love..So did the nurses they all took their turn to come in and take a peek :) A special thank you for all of those who have kept Nathan in their prayers. I truly believe God was in that operating room that day guiding the surgeons hands. And that he continues to watch over Nathan has he heals, in answer to everyone's continued prayers..

God Bless,
Lyn

Surgery went very well!

Hey guys,

Nathan is fast asleep, and I have a quick moment to give everyone an update. They have a computer in the parents room, so I'm able to pop online when I have a moment.

Nathan's surgery went great. He was in and out verly quickly, with very little complications. Waiting was the worst part. Luckily enough we had family and friends to keep us company, and it made the wait bearable. This morning he was taken off his breathing tube, and is breathing on his own!! He is such a fighter!! One tough tomali my little Nathan..

The doctors and nurses are incredible! They are very patient and informative, which is really great. I spent the night my own little room right outside the icu. It looks like I will be able to use it again tonight.

Nathan is awake, and grunting. He doesn't seem to be in any pain. By friday he should be moved out of the icu. So farr so good! Well I don't want to be away for long..

Thank you all for your prayers, they worked! Please keep them up, so Nathan continues his speedy recovery!!

Pre-op coming up..

The big day is coming up.. It's forever in my mind, almost surreal, as though I'm in the middle of a nightmare and just can't wake up.. My beautiful baby boy, my gift from god - I just wish I could take it all and go through everything for him.. But I can't. All I can do is be there by his side, comfort him, love him, and watch him has he sleeps..

Hearing test - Well now his left ear passed, yea! And well Nathan only has little cat naps so once again could not get a good reading on both ears..This time it was his right ear. So we get to go again in a few months, this time to Kingston.. I am trying to convince them to transfer Nathan's case to the audiology dept. in Cheo.. Not sure they can do it, but they will try..I don't think he has a hearing issue, however he is considered high risk and needs to be followed closely. I know I should be greatfull, I just would like to be doing more of the "normal" baby things with him than having all these health related appointments..

Sedated echo - Upon arriving for his sedated echo, Nathan's vitals were checked. And I was warned that the medication to sedate my little monkey, tastes real nasty. They do add lots of flavouring to the medication, and it still tastes something awfull, aluminum so I'm told..mmm..Well knowing that Nathan has his brothers talent for getting himself all worked up and puking on cue..I request giving him the medication myself.. So I did. And he cried, and cried and cried.. I was really surprised at how upset he got from taking this medication..They were not fooling, it must taste dreadfull! Shortly after he fell fast asleep. They got the picutes of his heart they wanted, his EKG. We got the stickers off without him crying, thanks to the patience of his nurse Kim! He woke up while they were getting blood, and wasn't too happy.. They had a real hard time getting what they needed and eventually had to stop because it was just too much for the little guy..I rocked him and kissed him and calmed him back down, and shortly afterwards we were aloud to go home. He stayed pretty sleepy for the rest of the day, i feel bad but it was kinda nice.. I got a bit of a break and I really needed it.

My older two, Kristopher and Mykaela are so amazing. Nathan is so blessed to have them has siblings. Mykaela is a little mommy, hugging and kissing him. Bouncing him on her knee making him laugh and laugh..Holding him and rocking him has he cries..Praying for him every night before bed.. It is something to see, the special connection between the two of them. Kristopher is proving to be a pillar of strength, and showing an incredible sense of humour. Nathan has put a sparkle in Kristophers eyes that just wasn't there before. Kristopher wanted to donate his own blood for Nathan, he is too young but he says he would risk his life to save him..He already has plans to take co-op in highschool and work in Nathan's classroom.. He is very protective of his little brother and full of questions regarding his health. Both kids are expressing their worry over their little brother and we all share a hug and cry together. I think it's important that they are learning how we has a family can support each other through such tough and scary times. I am so proud of them, they are growing up so fast.

God i love my kids..

We have a surgery date..

So we have had several visits to Cheo in the last little while. He's lost weight, gained weight, and then gained not has much weight..Had blood drawn and things there are looking good..They presented his case to the surgery team, and a date for his surgery has been booked..The big day happens on Sept. 30th.. I will be donating my blood since we have found out I am a match, that starts hopefully sometime next week. And that is about it..

He has started to laugh!!!

The other day I witnessed the most amazing event ever. Truly nothing can compare. What was this event you ask? Nathan laughed for the first time. I believe it was over a one on one conversation about poop..Yep no doubting he's a boy!! His eyes sparkled and his mouth opened in a huge grin and very little noise came out, lol. You know when you get laughing so hard that the only noise you make is this little wheeze...Well that was how Nate chuckled over the idea of him giving me another dirty diaper to change, lol..




Okay it's been a long while since I've updated so here is what has been happening..





Nathan lost some weight if you remember and was put on meds for his heart. Well since then Nathan has gained weight and is doing great! He has the cardiology dept. wrapped around his little pinky, they all think he should be a poster boy, lol. He has warmed them over with all his baby babble..Which is the next best thing to him laughing..So health wise, so far so good. If he continues to do well with the meds, his surgery can wait a bit, making it much better for him! The later the surgery (later being around 6 months) the better the outcome will be. So keep up the prayers that he stay strong! And thanks to all of those that have been praying for him so far!



Last weekend we got little Nate baptised. (I was originally hoping to have him baptised in Aug. when all the family would be around. When I got around to chatting with Father Gus about it, I found out that he would be away for several weeks and his replacement would not be doing baptisms. Since Nathan's last appt. I was worried that surgery might be bumped up some due to him losing some weight. The only time Father Gus had available that would be guaranteed before Nates surgery, was the coming Sat. Giving me under one week to pull it all together. So it was a very small private affair. I apologize to all that didn't get included in the event, I really had so much on my shoulders that I just couldn't swing it. I do hope you all understand.) The baptism went really well. Nathan was a little fussy at the beginning, but he calmed right down during the ceremony. There was one point where Nathan gave Father Gus his full attention, and it was very sweet. I have a feeling it was that moment he also wrapped Father Gus around his finger..Friends gladly accepted the role of Godparents and we couldn't have been more pleased. All in all it was a very nice day and I am relieved to have it done. I feel as though some weight has been lifted off my shoulders.





Since my last post we have also attended a truck show. Brian entered his truck in the show and shine. The fleet came away with first place! We all had a great time. We brought a huge canopy and a pool. Brian filled the trailer with water so it was easy to fill.. We all wore company shirts including one I made for Nate..Brian's boss apreciated the tent, pool and little Nate being a strong supporter of the company, lol..It was a long fun filled day, and the kids came home happy and tired..





That's it for now!

Wow, didn't think we would be there that long..

Nathan and I spent a total of 6 hours at Cheo the other day. Many tears, many tests and too many minutes to count. I am very thankful that Kristopher and Mykaela were lucky enough to spend the day with friends. They had very eventful and fun filled day, and I am glad.

So Nathan's first test was an echo. That is essentially an ultrasound of his heart. He was relatively co-operative. Just a few grunts and groans and squirming here and there. Nathan is always squirmy when he is awake. One of his little quirks that I just love. Afterwards he had an EKG. Well it was quick and easy until it came time to take off the sticky tabs. Then my adorable little peanut, was very mad. He protested very loudly. It reassured me that there is not much wrong with his lungs, lol. Afterwards we met with the cardiologist. He had his vitals done at this time. The doctor wanted more tests. She wanted blood work and a chest ex ray. So off we went.

Blood work, was just awful. His veins in his arms are terribly small. The technician was concerned that she couldn't get the vein in his arm on the first try, so she wanted to get the blood from a vein in his scalp. AHHHH!! His what?? Your going to prick my baby where??? I wasn't prepared for that. So yes I shed a few tears. The technician was very good at calming me down. She didn't want to poke around and make it terribly uncomfortable for him. However, she has to make him cry continuously in order to get a sample from his scalp. Great..Sigh..So okay, couple of deep breaths, here we go. I held his hand. And had to stop cause he had to cry and I was inadvertently comforting him. So I watched them prick my baby's head, and listened to him get extremely upset while they got enough of the blood they needed. It wasn't nearly has bad as I had first pictured it in my mind when they first told me what they were about to do. I still don't like it, but who likes to see there kid cry?

Next test was a chest x-ray. Waiting was long. There bathrooms are too small to fit a stroller, and there was no way I was placing the car seat on the floor. In a 6 hour period, you just gotta pee at some point. Thankfully, the nurse from cardiology came looking for me, thinking I might be lost. She stayed with Nate so I could do my business. Phew!! That could have been embarrassing, lol.. When I got back the had Nate in the ex ray room. They strapped him in a tube with his little face sticking out and his arms sticking out above his head. Nope he didn't like this test much either. And yes I teared up too. Now he handled this test like a trooper and didn't cry very long. I think the fight was out of him at this point. He was exhausted and wouldn't eat anything. He missed two bottles while we were there. We quickly returned to the cardiology department.

Now the cardiologist stayed late for us. The tests results showed that Nathan's heart was enlarged and that his liver was a little high. Signs of the beginning stages of cardiac arrest. Meds were prescribed to help him out. The blood tests that came back showed some concerns, his white blood count was high. He is not sick. It could be a sign of some disease, that I don't remember the name of, or it could just be cause he was stressed. It will have to be followed up with one of Nate's pediatricians.. And that was it. We are to go back next week sometime to have more blood work and to see how the meds are working. We got back to CP at 7pm. A very long day. Little guy was exhausted and slept very well. He caught up once we were home on his missed bottles and was zonked out when he wasn't eating.

And that was our adventures of that long dreary day. Lesson's learned. Don't go alone for testing in case I have to pee, cry, or both! And make sure to continue to get my other two looked after so my hands aren't too full.

Tomorrow we head out to a truck show. Got the all clear for travel with the cardiology dept., you know cross my t's and dot my i's.. So we are anxious for a fun day out! Okay, I'm just happy to get out of the house for anything besides a doctor's appt. ! Lol. So take care and we'll post again soon!

I wanted to cry too..

Today Nathan got his first set of immunizations. He did not like them..He cried, and cried and nearly puked. He choked and gasped and cried some more. His little face went deep red his bottom lip went out in a very unhappy pout. And 10 minutes later he was fast asleep. I must admit I had a hard time holding back the tears too.. It sucks seeing your child in pain. I wish I could take his place for it all, the immunizations, open heart surgery, whatever scrapes and bruises he will no doubt get as he grows.

Today is one of those days I hate the hand I've been dealt. I watched in horror has my sons arms turned a deep purple while straining to fill his diaper. I'm sure I stopped breathing. He didn't cry, it didn't faze him. It did shake me up tremendously. How am I going to keep it together when he goes in for surgery? It freaked me out to see his little chubby arms turn different shades from the elbow down. I was so close to bawling at him getting an immunization. How in the world will I stay strong enough to hand him over to the surgeon? How will I not lose it completely when I see him all hooked up to different machines, wires all over and a large scar going down his precious little chest. Okay I know I have to take it day by day. This is my mantra I repeat often to myself. I will find the strength within has I need it. God, I hope so..Well taking day by day, today really sucked.

Nathan's cardiology appointment got bumped up to tomorrow. He is starting to eat and wet his diaper less. He is sweating more and his skin is a bit on the mottled side (mottled meaning a bit splotchy looking). These issues had the cardiologist concerned enough to bump up his appointment. And well now that he turned purple I am glad that he gets seen tomorrow. I do dread the echo. I hope it's not too tough on the little guy. It will be a challenge to keep him still enough to get the tests done. And he will get blood work done also, so another bout of crying will no doubt be in store. I think I will bring tissues for me..I think it will be a long day. I am just happy that my other kids will be busy and i will not have to entertain them on top of it all.

So wish me luck for tomorrow, and throw in a quick prayer for Nathan to stay strong!