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!

A Grandmother's Point of View

"My mother wrote this, and I just had to share it with you all "


Down Syndrome is what Nathan has - NOT who he is.
Not like chicken pox or measles, more like being born
with red hair or left handed (to put it simply). Everyone
of our children deserve the best we can give them. From
unconditional love, teaching them manners, morals and
behaviour to the best of our abilities. Every child is
different and learns a different way. They have their own
pace, personalities and interests. Parents dream and hope
for success for their children, but what may be success to
you and I may not be to others. In my lifetime, I have heard
the word "plateau". I don't believe this word should ever be
used about a child. They may be resting or getting their
second wind, however, no matter what age we are we never
stop learning. How many parents, especially with teenagers,
have thought or said, "Will he/she never learn?" Of course,
he/she eventually does. It may have taken rephrasing it 20
different ways, being consistent, patient, and under all that
frustration, loving. But, he/she usually does learn. Some may
think "What about his medical and/or physical problems?"
So far Nathan has heart problems and as he grows he may
have others. We don't know as yet and will cross each bridge
when we get to it. Take a look around and see the young
children in your neighbourhood. How many have asthma,
allergies or diabetes? How many are in abuse or broken homes?
How many are hurt on the inside where no one can see?
Nathan has a very strong support system, not only from CHEO
(which is fantastic) but from family and friends as well. Is it easy?
No, but raising children is one of the most worth while professions
I have ever done - it is all in the heart. As I stated at the beginning,
Down Syndrome is what Nathan has -- NOT who he is!

Love from
Gramma Duck

Developmental Pediatrician - First visit

The pediatrician I met today was simply amazing. She definately knows her stuff. Of course she specializes in children with Down syndrome so it's no big surprise I find her wonderful. She was fantastic with Nathan and very thorough. She noticed Nathan has thrush and so he is now on medication for that, she also changed his reflux meds to something a little stronger. She was teaching a med student today, and Nathan was his first infant with Down syndrome. So they took their time with my permission to go over Nathan's Down's markers and general health. I of course listened in and learned a few new things. I had no idea that a crooked pinky was one of the markers. Brian and all my children have this trait so it was a complete surprise to find out it was also a sign for ds. She mentioned it is common for the average individual to have one marker it does not point to ds unless there are several all together. Huh, learn something new every day!

So far develepmentally Nathan is doing well. He is doing all the things a typical 2 month old would be doing. Yea Nathan! I learned that typically a child with Down syndrome is a few months behind on the typical milestones. So instead of sitting up at 6 months like a typical baby, he may sit up at 9 months. Walking might not happen until he is two. Interesting. We will just have to wait and see what Nate decides! I am looking forward to every new thing he ventures to try! And I will be sure to encourage many more..hee hee..

Nathan will be schedualed for hearing tests every 6 months, so I was told today. His and most children with Down syndrome 's ear canals are small. Fluid can get trapped easily and it is not uncommon for them to have issues with hearing or to require tubes. Nathan will also be getting his eyes checked, and be having an ultra sound on his hips. While moving his legs about, a regular type thing doctors do..Apparently checking hips..The med student noticed a "click". Now the doctor doesn't think it's anything but would like to rule it out so Nate will be having an ultra sound. I guess issues with the hips are also common with ds children. And blood work too to check his thyroids. And I think that covers it. Besides, all the stuff for his heart.. I have never seen so much of doctor's in all my life! I like doctor's and all, but I really don't want to see them this much.. Although Nate is totally worth it!

I find it interesting how with all these people I am meeting for Nathan, they all say the same thing. "He is lucky to have a mom like you" . And I have to say that it is I who is the lucky one. I am a little baffled at to why I feel that I am blessed to have a child with so many complications. Maybe it is because I am so happy that he made it here, and that I did not have to go through the sadness of a miscarriage. Perhaps it is because I am truly learning the importance of "stopping to smell the roses". I don't know, all I do know is that I love him to pieces and I am so lucky to be a part of his life.

First Canada Day and more..

Wow, time sure is going fast! I can't believe Nathan will soon be 2 months! He is starting to smile more, he loves bathtime! He reached out for a toy the other day and is getting to be more and more alert. He is also making cooing noises, which has to be the most adorable sound I have ever heard. His first Canada day was alot of fun. We went down to the festivites by the beach and hung around with friends. Kris was busy taking tons of photos with his camera, and racing along some bouncy course. He beat a 13 year old on the course and it made his day! Mykaela spent the week with her dad, truckin. In the evening friends took Kris to see the fireworks while I stayed home with Nate. I am so thankfull for all my friends! Kristopher video-ed the fireworks so Brian, Mykaela and I wouldn't miss out. How thoughtfull!

Health wise Nathan has had a few really fussy days. He screamed in pain a couple of times and was really restless and could not settle at all. It was really tough to keep him comfy. I took him to the pediatrician and Nathan was diagnosed with gerd (acid reflux). Poor little guy his tummy was giving him a hard time. He is now on medication and is starting to improve. Which is great , now I don't have to hold and rock him all day long! This is why I haven't had a chance to post thus far.

Nathan has many appointments, I won't post updates on all of them unless there is something new to add. We are meeting all sorts of new people, doctors, nurses, resource workers, new friends who have been or are going through similar journeys. Sometimes all the new people entering into our lives are a little overwhelming. And I know I have many more people still to meet. It will be interesting to learn how to juggle it all. Hopefully I won't drop any balls along the way! I just keep reminding myself to take one day at a time. And to breathe, lol!

DS Pic-nic and Cardio Appt.

This past Saturday, the Down Syndrome Association in our area hosted a picnic. So of course we went! It was a great experience. We were greated right away, plastered with name tags and introduced to many families. There was a parc, pool, fishing pond, tatoo's, face painting, raffle table, live entertainment and gifts for the kids. Oh and a free BBQ to boot! We all had a blast and made some new friends. We will definately be going again next year!

Nathan had his appt with his cardiologist today. All went well. Can you believe he weighs 10 lbs already! He was wide awake for this appointment, and enthrawelled the new doctor and med student with his cuteness. So far the game plan is still the same to have surgery between 4-6 months. They don't want to do surgery prior to 4 months since then the heart can be trickier to work with. So Nathan is doing well on his own so farr and does not need any medication yet. The next visit will be in 6 weeks, and then he will have a echocardiogram as well. (that is an ultrasound of the heart)

Kristopher had a field trip today, to a pool in nepean. His class was suppose to go to Mt. Cascades but that got quickly switched due to the weather. Brian took the day off and went with him. They had a blast and came home happy. Mykaela is looking forward to her birthday tomorrow and is very anxious for the arrival of Gramma and presents. And that is all for now, I am off to spend some time with my hubby!

Hearing test

Nathan had his hearing screened today. For the test they put a little probe type thing in one ear and have other wires taped behind each ear and one on the forehead. He needs to be resting in order for them to get clear results. Well today it took awhile to get him resting..:) He is just too curious. He also doesn't like anything in his ear! We did however, finally get it done! His right ear is all good. His left ear needs more testing.. So another appointment will be made with an audio-ologist. Then we will be able to get a clearer picture of what hearing issues there are with that ear..

I did think that he may have hearing issues. I am a little sad to know that there is a problem. And frustrated that I don't have any answers yet. It just seems to be one thing after another with this little guy. Not knowing is very hard. He has had a few issues come up this week. The other day he slept forever and couldn't be woken up. It was very scary. I called the cardiology department and he ended up waking up while I was on the phone. I've kept a close eye on him and he hasn't had any sleep issues since. It's impossible to go through a day without worry. I am hopefull that once his surgery is over and all the tests are done, that life will go to some kind of normal. I am hoping to get a better idea of when the surgery may be next visit to the cardiologist.

On the positive side, Nathan went to his first truck show with daddy.. He did very well in the car, and we all enjoyed the day together. This Saturday we go to a picnic hosted by the Down syndrome assoc. We are looking forward to it and to Mykaela's upcoming birthday..

What is Down syndrome?

Down syndrome is a chromosomal disorder that occurs in approximately 1 in 700 births in Canada. A person with Down syndrome will have 47 chromosomes in each cell instead of 46. Down syndrome results from a genetic imbalance in cells caused from an extra set of genes on chromosome 21. Down syndrome affects all races and economic levels. Statistics show that 80 per cent of babies with Down syndrome are born to mothers under the age of 35 years, as these are prime child bearing years.

There are several characteristics that are more common for babies with Down syndrome. They may include: low muscle tone, eyes that appear to slant upward, a flat nose bridge, relatively small nose and ears, and a single horizontal crease on either palm. Newborns with Down syndrome look like babies who do not have Down syndrome.

About one-third of all children with Down syndrome have congenital hear disease. Many are prone to respitory infections. Many experience visual, hearing or thyroid dysfunction. Greater frequency to leukemia. Greater susceptibility to Alzheimer's Disease.

There is a range of development in children with Down syndrome from severe mental handicap to near normal. Factors influencing this range, in addition to early intervention programs, include the other genes the child inherited from his family, effects of fetal distress or difficult birth, health problems, resulting in low oxygen or prolonged hospitalization for health reasons.

Many children with Down syndrome are performing at levels undreamed of in years past. Young people are graduating from high school with vocational diploma's, many are holding jobs in multi-national companies, in stores and garages. Some excel in sports, some in music and arts receiving worldwide acknowledgment of their talents.

For more info: http://www.cdss.ca

Complete Atrioventricular Canal Defect

This is a brief description of Nathan's heart condition. I will not be going into too much detail or list possible complications, it's just too scary.

The complete form of A-V Canal is the most serious. There is a very large hollow hole between the four chambers. As the heart pumps, blood is ejected everywhere, in no specific direction. There is no differentiation of oxygenated and deoxygenated blood. It is all mixed, in one large chamber, being pumped everywhere. Try to visualize a heart with complete A-V Canal as a hollow ball. If you put oxygenated blood in on one side, and nonoxygenated blood on another side, and then squeeze it, there is no way to keep the blood seperate. All of the blood will mix, and in the heart there in no way to send nonoxygenated blood to the lungs and oxygenated blood to the body. The mixed blood that is sent to the lungs is abnormally high in oxygen, and the blood going to the body is abnormally low in oxygen.

The two valves that normally seperate the upper atria from the lower ventricles are deformed too. Because there is no septum in the center of the heart for the valves to "anchor" onto, the valves fuse and form one common valve. This complicates the blood flow even more. Blood flow through the heart is very specific. In the case of A-V Canal, there is pandemonium and chaos in the direction of the blood flow. To prevent complications with the lungs surgery is performed before the child's first birthday.

Nathan's Beginning...

Nathan was born May 12, 2008. He weighed 8 lbs 9oz, and came into the world screaming. He had the biggest cheeks I've ever seen and purple feet. That is all the glimpse I got of him while they wisked him away to be checked out by the neo-natal doctor.
Prior to being born, during ultra sound, a difference was noticed in little Nathan's heart. One that required a better look by a fetal echocardiogram. Once the echo was done I (Nate's mom) was taken into an office with the cardiologist, a cardiology neo natal nurse and the cardiology departments councellor. Ugh..Right away I knew I wouldn't like what I was about to hear. I was terrified. I found out during this meeting that little Nate was going to be born with a heart defect. He was diagnosed with Complete Atrioventricular Canal Defect. I was also told that this type of heart defect was very common in children with Down Syndrome. I felt like I had been run over by a truck. I was in complete shock. I went through all sorts of feelings during the following several weeks. I was numb, terribly sad, worried, angry, frustrated and overwhelmingly sad again.. I took the time to research little Nate's heart defect. Some of what I found scared me more and some was re-assuring. I was told different stories as to what to expect at birth. One was great, he would be born okay and be able to be with me in my room right away, the other not so good he would be wisked away and be in the NICU at an ajoining hospital.
After little Nate was born and checked over he was handed to my hubby Brian and was brought to visit me. Both Brian and I were able to spend twenty minutes cuddling with him before he was brought to the NICU. It wasn't the worst case senario or the best, it was somewhere in between. Little Nate stayed in the Nicu one night. He was put on oxygen for a little while. Apparently it was due to fluid in his lungs since he came into the world via c-section and not due to his heart. He was brought to the adjoining hospital for an echo and an ekg. It confimed what was previously diagnosed. He was also checked out by the genetics team since there were a few signs of Down Syndrome. Blood tests were taken we were to expect the results the following week. We were left feeling worried and sad yet again. Shortly after all the tests were completed little Nate was allowed to be in the room with me. We were overjoyed that he was doing so well. The next day we were cleared to come home!! Even better news!
Shortly after coming home we received a call from the Genetics department confirming that Nathan had Down Syndrome. We took it very hard at first. It's been very difficult to explain all of what is going on with Nathan to his older siblings. (Kristopher age 10 and Mykaela soon to be 9) We are now coming to terms with little Nate's diagnosis, and are looking into what we can do as parents to give him the brightest future available. It has been two weeks since Nathan's birth and he is doing well so farr. He has us all wrapped around his little finger. He is just that cute. And while sleep is still evasive I wouldn't have it any other way. Little Nathan is a true blessing to this family.