This Girl!!!!

Down Syndrome Awareness Month continues with this little angel. There are so many little ones that I would just love to share with you. This month I happened to only choose a few. I can hardly wait to share the rest of them with you. I have met some wonderful families on IG, that just so happen to be sharing and documenting their path with DS. It feels so good to have a virtual family that understands, supports and loves my family for all our differences and commonalities.

This little girl is nothing short of a miracle. She has been overcoming some serious challenges ever since the day she was born. From health concerns that she just made disappear, to being cognitively advanced for ANY child of her age, to being the best big sister to Cameron, and to being just about the sweetest, cutest little doll that there ever was. This girl is the whole package. She is breaking down stereotypes, paving the way for littles with DS. I am honoured that her mama, Lauren, shares her with us virtually.

We had our first Facetime date last week and plan on meeting up ASAP in Michigan. I can hardly wait to lay my eyes and my arms on this sweet girl and her family.

 

Meet Ellie.

ellie

 

Here is what her sweet mama has to say about her,

In a recent FB post, a friend and fellow Ds advocate asked her FB audience, "Ds mamas: We always talk about what we like about Ds, but what do you dislike?" My immediate response, "Nothing!" I truly do love everything about that extra chromosome.

As I sat and pondered my reply, however, I realized that what I dislike the most is the negative societal stigma attached to those two words - Down syndrome. Sadly, when most people think of Down syndrome, the thought of moderate to severe developmental delays and low cognition come to mind. Well, my friends, Ellie is living proof that, that stigma is old and outdated. Today during testing, her new therapists touted her as "brilliant," "amazing," and "remarkable," saying that she is "going to do huge things in life." Little do they know, she already has. She is the most incredible big sister, daughter, and friend. We still pinch ourselves in disbelief that she is ours. What a life she has ahead of her! As far as that stigma is concerned, Ellie continues to break down stereotypes, as do many individuals with Down syndrome. In addition to being cognitively advanced for her age, according to her IFSP/IEP testing, (After all, how many 2 years olds do you know that can nail first-grade reading comprehension questions; recite all of their letters, numbers, shapes, colors; and sight read more than 150 words?) the experts say that she has only a mild speech delay. Again we were encouraged to push full steam ahead with regards to full inclusion when it comes to preschool a year from now. Breaking down old stereotypes, smashing negative stigmas, and promoting both acceptance and inclusion of individuals who happen to be rocking an extra chromosome, that is what Ellie is all about. The sky is the limit and we couldn't be more proud of our amazing Ellie!

Ps. Her mom says that when she's wearing this outfit, she really does believe she is Cinderella.

Such a sweetheart!!! I am so SO SOOOOOOOOO proud of this little girl and her accomplishments.

Much love to Ellie and her wonderful family...xo

DSAM - Love me some Abby & Bailey

In an effort to continue to advocate during Down Syndrome Awareness Month, I'd like to introduce you to a couple of little girls that emanate pure joy in ALL that they do. Seriously, I dare you not to smile when you see Bailey's sweet sweet face. I met Christy, the beautiful mama of Abby and Bailey on IG. We are virtual friends. Her feed lit'rally brightens every single day for me. These girls have smiles that WON'T quit. After having Bailey, they adopted Abby. Happy endings do exist!

 

abby1

 

I was looking through my IG feed one day and I came across this pic of Abby. Then I read her mama's words. I was speechless. I stopped and stared at this sweet girls pic and I just thought...

YES!!!! YES!!!! YES!!!!

This is exactly right. I feel the same way. Truer words have never been spoken. I am so proud to be a part of this world. Yes, it's challenging at times. But, LOOK!!! It's worth it. Every time I have second guessed myself, or Hazel. All the times I cursed having to do therapies with her. All the times I wished that "that one thing" was just east for her to do. It's all worth it.

Well just read Christy's words.

abby

 

She says it best...

"Can you imagine what your life would look like if things that came easily to others weren't so easy for you? What if things like walking and talking and writing and jumping, and swallowing were things you desperately wanted to do but had to work and work and work to accomplish them? Would you do it with a smile on your face? With determination and without giving up? Today Abby drank from a cup unassisted, and she did it beautifully, remembering all of the instructions given to her by her speech pathologist to help her swallow safely and prevent aspiration. Girlfriend rocked it and grinned the biggest, proud of herself grin ever when she was done. I don't know when in the history of mankind that people with special needs became the ones that were made fun of, picked on, and not given opportunities to thrive. If anything our society needs to be looking up to these individuals who work so hard to accomplish things that often come so easily and naturally to their typically developing peers. Some days I want to weep for my daughters because of the way society has imposed its untrue and unkind stereotypes on them. Every single day I want to applaud them for determination and hard work and abilities. They inspire me."

AMEN!!!!

 

This is Bailey. AHHHHHHHH!!!!!!! I. Can't. Even.

bailey

 

This family is beyond inspirational. To follow along with Abby and Bailey's journey please find them on IG at user name "cjpics." Christy's words about adoption are raw, true, emotional and inspirational. Every time I read a post about her sweet Abby and their experience with adoption it's like I'm receiving a call to action. There are babies out there that need homes, love, support, mamas, dada's, brothers and sisters. These babies need medical attention, therapies and TLC.

To read more about adopting a baby with Down syndrome, please take some time to visit Reece's Rainbow. A website dedicated to finding sweet little angels with Down syndrome their forever homes.

 

 

3-21World Down Syndrome Day 2014

PicMonkey Collage First I wanna say that I am overwhelmed by the Facebook and IG love we received yesterday. WOAH!!!! We feel very warm and fuzzy over here.

 

What can I say here on World Down Syndrome Day that I haven't said before.

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It is important to say that Down syndrome is our everyday life. It's "normal" for us. Hazel just is. She is...

Our daughter, a sister, a 2 year old, a little girl, a cousin, a niece, a granddaughter, and a friend.

She likes...

To read, play, eat, sleep, sing, dance, walk, run, play outside, go places, be free, give hugs and kisses, watch TV (The Voice and The Wiggles) and so much more.

Down syndrome, a once very scarey thing for us, has become a part of our everyday. It is no longer scarey. It is no longer the unknown. That certainly doesn't mean that we don't have concerns for the future or worry about what challenges lie ahead. We do. Trust me we do. But why worry about the possibility of a future challenge or problem, when all is perfectly well right now.

Sometimes I lose this battle. I find myself really panicking about school, or her friends, or whatever.

Then there is a day like today.

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PicMonkey Collage2

And I remember that we are not in this alone. I remember that we have all of you. I remember that our hearts and minds have been opened to accepting that which is "different" (but not really). I feel genuine love and support. This day where I didn't have to ask you all to wear your crazy socks or your t shirts to show your unrelenting commitment to showing the world that Hazel has a place in it, as do others who share her extra chromosome. You just did it and shared it and ROCKED IT!!!! I'd like to see anyone try to disrespect Hazel in any way. They would have all of you to deal with. Our village is becoming a fortress. Again, I am honoured to be part of it.

So many things made me happy today. Thought I would share some.

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w3    w7

w6

seguin

axel

If having trouble viewing click here
 

joli

h1

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h4   h7

h8

(yes...this 11 year old painted this for Hazel)

PicMonkey Collage

vita

nicki

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chris

THANK YOU!!!

 

Happy Friday

Happy Good Friday!!! We hope you have a great Easter celebrating with your families, friends or simply just taking a few days away from work. Enjoy!

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fri3

 

We need a favour:

Baby Annie needs some good-ol'-fashion-Chasing-Hazel LOVE and SUPPORT. She is 6 months old and going for heart surgery on April 1st. Annie needs some prayers and positive energy sent to her and her family. You can see a pic and read more about Baby Annie here. Her mom writes a beautiful account of meeting her new baby and all the blessings that Annie has brought to her life so far.

While you are sitting around your tables this weekend, or when you are taking a quiet minute to yourself, please try to remember Annie and send her strength and love.

You are going to do great Annie, we are all thinking about you. Good luck baby girl!!!

Please feel free to leave a comment here to let the family know you are thinking of them. It helped us tremendously to know you were all behind Hazel when she was going through her heart surgery. Thanks everyone!

 

Strength & Love

 

 

Little N3lla's Triple Crown

I wanted to share something with my Chasing Hazel family. If you have been reading a while, you might remember my mentioning Kelle Hampton (once or twice, or three times - whatever don't judge me). She has been a huge influence in the Down Syndrome community since the birth of her daughter Nella. Her charisma and passion for raising awareness for individuals with Down Syndrome is admirable.

If you have not yet visited her blog, wait until you have some time, grab a coffee (or whiskey tea - whatever- I won't judge you) and enjoy.

 

For now, Nella is trying to raise money for the National Down Syndrome Society.

Every year for her birthday, Kelle celebrates by reaching out to her readers and asking them to support the cause. Over the past 2 years, they have raised over $200, 000. This year they are at it again with a new goal. They would like to have a grand total of $300,000. Anything helps!!!

 

Click HERE to find out more about how you can help support...

N3lla's Triple Crown

 

Nellas triple crown from ETST on Vimeo.
 

 

Gratitude & Peace

 

 

 

 

A new friend...Aksel

  I would like to start off the new year by introducing you to another precious little one, Aksel.

 

 

I have had this post in the works for a while but could just never seem to get to it. Aksel, Hazel's new friend, came over for a visit in the summer time. I think Hazel was about 7 months old. Aksel was 6 months old.

He and his parents were in the process of moving here from Helsinki, Finland. They heard about our family through a mutual friend. It was very exciting to meet a little guy that will live in our local community and is the same age as Hazel. I imagine there will many more play dates in our future.

 

It doesn't hurt that his face is literally perfect. Such a little angel.

 

 

Love these...

 

 

A huge welcome from our family to yours Aksel.

 

 

Carter and Ella goin' strong!!!

Part 3 of the visit to London post...finally!!! Hello Ella. My how you have grown...

Hazel finally got to meet precious little Ella.

They sat and played...rolled and talked. Ella was a very gracious host, allowing Hazel to play with all her toys. It was so great to meet Ella and Jen. We compared notes about how amazing our strong little babies are doing after facing open heart surgery. We shared feelings of pride. We talked about how hard past times were and, most importantly, we talked about hope for the future. With healthy, happy little babies, the possibilities are endless.

These pics are TOO MUCH!!!

And we met Ella's cat.

Also, we got to meet up with Baby Carter. He is also doing well after his surgery. Unfortunately, our visit was very short (between doctors appointments for both of us). We still managed to get some snuggles in.

My heart is so happy when I am around kids like Carter, Ella and Hazel. They have faced (and overcome) so much already. Yet, they are happy, healthy, thriving little people. What's not to love!!!

 

Thanks Alysha and Dakota for the yummy homemade cookies. I am not going to say what happened with it's leg.

What I will say is, it was a long car ride home and I may have felt like I was James Franco in the movie 127 Hours and well...use your imagination. The cookie is lucky it survived at all...right?

A Christmas Wish for Coco

Note: The following post was written by my cousin Heidi. She reached out to me about a little girl named Chloe that needs our help. You can learn more about Chloe below.

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I know Stephanie's Instagram obsession is well documented here - but I too confess I am bit of an Instagram junkie.

Somewhere along my IG journey I stumbled on the photos of a little girl named Chloe - an adorable girl who, like Hazel, has Down Syndrome. Also like Hazel, she stole my heart.

Presently Coco, as she is called by love ones, is bravely battling Leukemia.

Coco's Mother has given me permission to share her story in hopes that each of you can say an extra prayer for her.

She recently completed round 4 out of 6 of her Chemotherapy and has had many rough days due to side effects.

Even with sores in her mouth, and nausea caused by the drugs, Coco manages to share smiles and has a joyous zest for life that only a child facing this disease could carry with them. Coco is truly a hero and inspiration to anyone that knows her story.

Coco's parents learned of the cancer while overseas preparing to bring home her new sister who also has Down Syndrome. She was adopted through the amazing organization, Reece's Rainbow.

Her mother, father and siblings are courageous as they too head down this difficult road that no family should have to face.

While our families join together to open gifts, share laughter, and enjoy a glass of vino with our holiday meals, little Chloe will be in the hospital.

I'm sure Children's hospitals make an effort to make Christmas special for those who must be there, but there really is no place like home.

Today, I ask you to say a prayer for Chloe. To make a Christmas wish for her recovery. And to send strength to her family.

You can follow Chloe on Instagram here...

Carter goes home

Here is the update on Carter directly from his mom. He is a strong little guy!!! Day 1:

Carter has been moved from the CCCU to 4D in less than 24 hours after surgery! Carter's breathing tube came out last night around 8pm and he was put in a hood venting box as a breathing aid, which he has since ditched as he figured he could breath on his own. Carter has also had the following lines removed: catheder, arterial line, IV and NG tube. Carter has been taking formula on his own since midnight last night. We could not be more pleased with his progress.

Day 2:

It was a good day in terms of progress for Carter, but also a tough one too. Carter came off of his continuous morphine this morning and has been switched to an tylenol/ ibeprofine combination for pain management. Carter had a sedated echo this morning and had a hard time with the oral sedation. It also took him awhile to wake up afterwards. However his echo looks good. Brandon and I were amazed to look and see what his heart looks like now repaired in comparison to before surgery. It was also neat to hear his heart beat and what the blood flow sounded like between the repaired chambers. Carter was moved into his own room after his echo. Mommy/ Daddy and Nana/ Papa are now doing 12 hour shifts as we are expected to be more involved with Carter's care. Carter also had his incision tape removed. His incision looks great for only being 2 days post-op. Carter continues to have great stats We are now looking forward to going home soon, however whenever Carter is ready to do so.

Day 3:

Today was a much better day for Carter. He was much more himself today - very content, smiley and telling us all kinds of stories (some happy, some sad). Today Carter had his pacing wires taken out, along with one of his JP drains. The other one is still draining more than they would like to see. Hopefully tomorrow the other one will come out and then home maybe ?!? Oh and Carter is now off his STATS moniter! He is such a little trooper - we are so lucky!

Day 4:

Carter had another great night last night and continues to feed like a little champ. Carter's last JP drain came out early this afternoon. Carter has been given his discharge papers and we're packing up and going home!! We're so excited to come home and see our big girl, Dakota. Thank You everyone for all your thoughts and prayers. We truly appreciate it!

From Carter's mommy...

This update is directly from Carter's mom...  

Carter came out of surgery just before 2pm and is now resting/recovering in the CCCU (Cardiac Critical Care Unit).

Surgery went as well as Dr. Caldarone expected, with no complications. We were finally able to see and kiss our sweet little man by 3:30pm. He looks very good despite all the tubes and wires he is hooked up to. Stats are good.

We we're told by one of the nurses that Carter charmed everyone with his smile right up until the moment they put him to sleep. It was a very long and stressful day, but we are happy to now put this behind us and for the new and improved Carter (Carter 2.0 as friend Ella calls it). But most importantly we are looking forward to not have to worry about this any more and moving on with our lives.

We are very thankful that Brandon's parents and my Aunt Rosemary were down with us to keep us sane and that my parents and Tata Kasey could watch Dakota. And to all of you for your thoughts and prayers. Please know that we truly appreciate it. But we ask for your continued thoughts and prayers over the next couple of days as they will be critical in his recovery. Many thanks!

Alysha & Brandon

Carter's Surgery Booked!!!

There was an opening at Sick Kids and Carter's AVSD surgery is booked for tomorrow!!! I couldn't be happier for him and his family to be able to finally get this done and over with. I hope that they experience the same feelings of relief when it is all over that we did.

I was honoured to introduce Carter to you all!!! I hope that you have fallen in love with him like I have.

Please, while at your dinner tables or before you settle in to sleep, keep them in your thoughts and prayers for tomorrow and over the coming weeks. His AVSD surgery is going to be more complex than Hazel's VSD surgery was, but he is a strong little man that I am confident will do just fine.

 

Carter's surgery CANCELLED

Unfortunately, Carter's surgery has been cancelled for the time being. They have given no reschedule date as of yet. I will be sure to update everyone as I get more information.

For now, we keep the emergency surgery cases in our hearts, 1 newborn baby and 2 babies that need heart surgery immediately. Let's also be thankful that Carter is not one of those emergency cases.

Thanks for your continued support

Carter Needs Our Prayers!!!

We had the pleasure of meeting a fantastic family while we were in London with Hazel. They were awaiting the arrival of their 2nd child, Carter. Among the many things that define Carter - handsome, determined, happy, loving - he has Down Syndrome. Naturally, he and Hazel had to be friends.

 

When Carter was in his mommy's belly he defied all odds. He faced Cystic Hygroma, Fetal Hydrops, Atrioventricular Septal Defect, Tetralogy of Fallout and two patches of edema. Yes, it is as scary as it sounds. Yet he is here - healthy, happy, and thriving. This is just the type of kid Carter is. Another tiny hero!!! 

Although Carter has been doing well to this point, he is starting to experience some difficulty growing and thriving due to his heart condition. He will be going in for AVSD surgery on Tuesday October 16th. He has a wonderful family to support him. Please keep Carter and his family in your thoughts and prayers over the next little while. They are going to need our help to get through this difficult time.

 

The support that we have received from all of you carried us through some of our darkest days. We can never fully express our utmost gratitude for your involvement and concern for the well being of our baby girl. It has helped Hazel, Ella and now Carter. Thank you so much everyone for being such an amazing community to be a part of...we are proud!!!

 

A quote from Carter' s mommy...

"Thank you to all our friends and family and to those people we don’t even know for your kind words, but most of all your prayers. You have made this journey less difficult. You inspire us to be better, to do more to raise awareness for those with Down Syndrome, but most of all remind us to enjoy the little being that Carter is. So I say again, Thank You, thank you from the bottom of our hearts. We are so lucky and so blessed."

(I have attached Carter's full story below. His mother, Alysha, wrote down her experience and wanted to share it with you all...very brave!!!)

 

Carter and Hazel had their first play date this summer, we hope there will plenty more. Hazel and mommy waiting to meet the little man...

Here they are...perfectly sweet family!!!

And this is the little fighter, Carter...

Kinda hard to hide the love I have for this little angel...

Seriously....SERIOUSLY!!!

The remainder of this post was written by Alysha, Carter's mommy.

 

 

My husband Brandon and I found out we were expecting again in late July 2011. Needless to say we were a little surprised but were excited to give our daughter Dakota a play mate. Our families found out shortly thereafter as it’s hard to keep surprises from them. As us, they were elated.

At 13 weeks I went for my IPS (Integrated Prenatal Screening <1>) blood work and ultra sound. I was so excited to see this little being inside of me and in turn to show everyone the ultra sound pictures. Two days later I got the call from my doctor’s office at work telling me that there was an abnormally large pocket of fluid on the back of our baby’s neck which could signify a chromosome abnormality. I don’t remember much of what the nurse told me during the remainder of that phone call. The thought that there was something wrong with our little one is all I could think of. I immediately dropped to the ground and broke down in a sobbing mess. That call would lead to a string of events that would test our strength, love and faith for one another. It is among many days in my life that I will never forget.

My doctor’s office immediately set up an appointment for the next day to speak with a genetic counselor, down in London at LSHC. Brandon unfortunately couldn’t come with me because of work, so his mom was able to go with me thankfully, so I wouldn’t have to go alone. So many thoughts ran through my mind leading up to this appointment. “Is there something I did wrong?”, “Is this because I forgot to take my prenatal vitamins a couple of times?” “What is going to happen to our little one…?”

Needless to say I was not prepared for what the geneticist was about to tell us and to be honest it is still a bit of a blur. Our genetic counselor was very kind. She took her time and explained everything in great detail and then again when we asked her to just to make sure we understood everything. We were told that there was a patch of fluid on our baby’s neck was referred to as Cystic Hygroma <2> meaning that there was a 50-60% chance that our new little one had some sort of genetic disorder (Trisomy 21, 18 or 13) <3> and that we were also at a very high risk for miscarriage as there was also Fetal Hydrops <4> present. At that point were not expected to make it past the 18-20 week mark.  She explained all the different syndrome’s our child could possibly have. All of which seemed terribly frightening at the time. 

 And then we were presented with our options.  We could either 1) have a CVS (Chorionic Villus Sampling <5>) test done in which we would need to decide on immediately because of where we were in the pregnancy. As well because the procedure would need to be booked immediately and we would need to go to Toronto for it. 2) Have an Amniocentesis <6>, 3) let nature take its course or to 4) abort the pregnancy and walk away from this nightmare.

I knew there was no way I could go through the CVS testing as we would need to make a decision on the spot and it just all seem to rush. Brandon and I put a great deal of thought into deciding what we wanted to do and how we were going to proceed. We also took the time and talked to our families. We ended up deciding to do an amniocentesis as we knew we couldn’t go through the entire pregnancy not knowing what was wrong with our little one or worry knowing there was something possibly wrong. Even though it was heavily suggested that we abort the pregnancy we are not comfortable doing so. This baby was made with love and we felt it deserved to be brought into this world with love and given the best of everything we could give it.

Two weeks later (the Tuesday after Thanksgiving) I went in for the amniocentesis procedure in London. I was so scared about the whole thing – “Would it hurt?”, “How big is this needle again?”, “Will our baby be okay?” I can’t say that it was a quick and painless procedure, but was happy when it was all over. We received the initial results from that testing (via a phone call) within a couple of days from our genetic counselor. The initial results show that baby has Down Syndrome. In one sense we were relieved that it wasn’t anything worse but sad at the same time. We were sad that our baby would have some difficulties to face in life. But then again, what child doesn’t?

Once we found out the initial results we began to share the news with family and friends. Quite a few of our family and friends told us not to trust the results from the amniocentesis, that the results were often wrong. But in our hearts, we knew it was right. The detailed ultra sound that we had a couple of days later verified these results. The ultra sound detected one of two things with our baby. One being that the Fetal Hydrops had disappeared and we were not at such a high risk for miscarriage anymore. The other thing being detected was that our baby had a very severe dual heart defect which would require surgery possibly within the first few months of life. I think finding out that our little one had heart problems made me even sadder than finding out about the Down Syndrome. At this time we decided to also find out the baby’s sex. We were told that we were expecting a little boy, with whom we would give the name, Carter.

After our detailed ultra sound, we were immediately rushed to pediatric cardiology to speak a cardiologist who carefully explained our baby’s heart condition to us. He informed us that our baby has a very large hole in its heart located between all four chambers, where the blood coming into the heart and going out of the heart to the other organs of the body are mixing together. This type of hole is called AVSD (Atrioventricular Septal Defect) <7>. As well the pulmonary artery of the heart, which brings blood to the lungs, is was very narrow is size. This type of defect is called Tetralogy of Fallout <8>. As well the cardiologist thought there was a very good chance that we would have to deliver in Toronto, unless there was some significant change in the months to come.

Amongst finding out the news of our little one, we were in the process of purchasing our first home, packing, and getting ready to move. Life was very busy for us at that point in time. We tried our best to carry on with our daily lives and be positive while having very heavy hearts of the news. But life as it did carry on and we began to look forward to meeting our little one.

However we were hit with another blow of bad news during one of our appointments in Mid November. Our latest ultra sound showed that our little one had developed two patches of edema <9> - one patch being located on the forehead and the other around his already fragile heart. Needless to say we went into panic mode – “What does this all mean?” “What would happen to our little one?” Our obstetrician first explained what edema was and what our next steps would be. At that point he felt it would be best if we wait a couple of weeks and see if the edema progressed and then go from there. We went back two weeks later and had an ultra sound which miraculously showed that the patch of edema surrounding the heart had disappeared and the patch on the forehead was reseeding. Our obstetrician told us that this is his third case in his thirty-seven year career where this has happened before. We could not have been more joyous at that moment – we like to consider it as our Christmas miracle.

After one of our many appointments, we ran into our geneticist, who had just had an appointment with another young couple with a similar situation, and was wondering if we would be interested in connecting with them. We said yes immediately as we thought it would be nice to go through this process with someone else and then hopefully in turn become lifelong friends. Jen and I immediately connected through e-mail and swapped stories of our pregnancy journeys up until that point. It was so nice to be able to talk to someone who was going through what we were and who felt what we were feeling.

In early February we had the privilege to tour the NICU where our little one would be spending its first few days plus of life. While there we had the opportunity to meet a little one with Down Syndrome and I have to admit I fell in love. Her name was Hazel. She was so beautiful amongst all the wires and tubes she was hooked up to. But seeing all of this was hard too, knowing that this is what our little one would be faced with too - it broke my heart. Thankfully the nurse giving us the tour gave me Hazel’s mommy’s contact information (with her permission of course) to call should I have any questions or just want to talk.  And I did. I had so many questions and Stephanie was great. I felt an immediate connection. We talked for hours. And I felt a little bit more at ease and prepared for what we were about to face.

In one of our final appointments towards the end of February it was decided by our obstetrician that we would induce the labour at 38 weeks because the blood circulation in the umbilical cord <10> between Carter and I was starting to decrease and we risk any additional stress his heart. So we made our preparations for the chosen date of March 9th. But low and behold Carter had his own plans and came on his own, arriving at 7:32am on the day we were to be induced. The delivery went smoothly and was by far much shorter than his sister’s. And we couldn’t have been happier to hold our precious little bundle and finally just meet this little miracle that would indeed change our lives forever.

We spent 18 days in the NICU with Carter. He was in the best of care with many wonderful nurses to look after him and adore him. Carter had troubles feeding while in the NICU and was slow to gain weight, but I was persistent and learned to do things on my own for Carter. By our last few days in the NICU I was able to do everything that the nurses were doing and Carter was sent home with NG tube. Not an ideal situation, but still manageable one. Once home Carter continued to amaze us – kicking the NG tube after 3 weeks, gaining weight and height at a significant pace.

Carter is such a joy and we couldn’t be happier to have made the decisions we did.  He is such a happy baby, so content, always smiling and laughing. Carter’s therapy team from CPRI London say he is right on par with his fine and gross motor skills, which can be compared to most “normal” babies. Carter is not afraid to show the world who is and what he can do despite his circumstances, leaving us all amazed. Carter was rolling over at a month and half old. He can reach and grab his toys, bring those toys to his midline and to his mouth. He can sit up while assisted while maintain good steady neck and head control. His BIG sister Dakota is his biggest encourager. She is completely in love with her little brother and is such a big help when it comes to taking care of Carter. Although this journey has been difficult for her too. Dakota tries very hard to understand what is going on with little brother and asks lots of questions. We as parents have hopefully done our best to explain it to her.

 

Carter is now starting to slow down quite considerably and is showing signs that he is ready for surgery. It is hard to watch him struggle to feed and play. Now that we know the date of his surgery and that it is soon to come, we couldn’t be happier. And to not have to worry about his fragile heart and having it hold him back. However that doesn’t mean we still are not nervous and scared for what is to come. But knowing that he is in the best of hands medically puts us somewhat at ease. Carter is very lucky to have some great role models to follow (Gage, Hazel and Ella!), lots of angels to watch over him and even more people to pray for him and his well being. Thank you to all our friends and family and to those people we don’t even know for your kind words, but most of all your prayers. You have made this journey less difficult. You inspire us to be better, to do more to raise awareness for those with Down Syndrome, but most of all remind us to enjoy the little being that Carter is. So I say again, Thank You, thank you from the bottom of our hearts. We are so lucky and so blessed. 

Below are some quotes I came across while still pregnant with Carter that made our journey less difficult and gave us faith to care on. Perhaps they could do the same for you during a hard time and when it’s hard to see what the future has in store for you.

‎"Faith: Faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1"

 

"‎Someday everything will all make perfect sense. So for now, laugh at the confusion, smile through the tears, and keep reminding yourself that everything happens for a reason!"

<1> To read more about IPS testing, please refer to the following website https://www.mountsinai.on.ca/care/pdmg/tests/ips

<2> To read more about Cystic Hygroma, please refer to the following website http://www.childrenshospital.vanderbilt.org/services.php?mid=8705

<3> To read more about Trisomy disorders, please refer to the following website http://www.biology.iupui.edu/biocourses/N100/2k2humancsomaldisorders.html

<4> To read more about Fetal Hydrops, please refer to the following website http://emedicine.medscape.com/article/974571-overview

<5> To read more about CVS testing, please refer to the following website http://www.babycenter.ca/pregnancy/antenatalhealth/testsandcare/cvs/

<6> To read more about Amniocentesis, please refer to the following website http://www.babycenter.ca/pregnancy/antenatalhealth/testsandcare/amnio/

<7> To read more about Atrioventricular Septal Defect (AVSD), please refer to the following website http://www.aboutkidshealth.ca/En/ResourceCentres/CongenitalHeartConditions/UnderstandingDiagnosis/DiagnosisofCongenitalHeartDefects/Pages/Atrioventricular-Septal-Defect-AVSD.aspx

<8> To read more about Tetralogy of Fallot, please refer to the following website http://www.cincinnatichildrens.org/health/t/tof/

<9> To read more about edema, please refer to the following website http://my.clevelandclinic.org/disorders/edema/hic_edema.aspx

<10> To read more about fetal and newborn blood circulation, please refer to the following website http://www.childrenshospital.org/az/Site636/mainpageS636P0.html

 

AVSD anyone?

What is AVSD? In layman's terms, it is a hole in the heart. It causes blood to take the wrong path into and out of the heart. Also, the heart has to work overtime to try and push the blood out of the lungs making it difficult to breathe and eat. Fluid can build up in the lungs and around the heart, which is characteristic of congestive heart failure.

In mommy terms, it makes it a struggle every time your little angel has to eat. They burn calories at an extremely fast rate. Our cardiologist compares eating with AVSD or VSD, to running a marathon. Usually people can only run one of those a day. Our little ones have to do it repeatedly. Therefore, making it easy for them to experience failure to thrive.

In medical terms, it is a hole between the two atria and the two ventricles. This large hole cause oxygenated blood and deoxygenated blood to mix. Less oxygenated blood is able to reach the body. Therefore the heart has to pump harder to get oxygen to the body, and pressure in the lungs increases. Click here if you would like more information on AVSD.

In the general population the incidence of having AVSD is quite low. The rate is much higher in those with Down Syndrome. Hazel had VSD, which is a little bit different. Click here to read more about VSD.

You may recall that this is what little Ella has repaired recently. She continues to thrive and grow. Now...we meet another little person about to undergo this AVSD surgery, Carter.

 

 

Ella Update!!!

I have been talking on and off with Ella's mom, trying to give them time to heal and get through the difficult times that were, and are, still upon them. What has amazed me, consistently, is the fact that they are doing wonderful. Ella is nothing short of amazing and is doing everything she can to get better, and quickly. Despite a minor set back during the surgery, Ella is recovering without fail. Before her surgery she was taking all her feeds through an NG tube. Already the tube is gone!!! She is taking all her bottles orally. Once Ella decided that the tube was not necessary and she hasn't looked back. Her parents could not be more thrilled. She now weights 11lbs 4 oz and is 59cms long.

Here is a note from her mom:

So now we are enjoying being back at home, enjoying our new and improved Ella. Our challenge these days is ensuring she continues to take things easy for the next couple weeks while she recovers. A little tricky, considering she has so much energy now! But she is back to her normal routine of eating, playing, more playing, watching the pets, chatting, and the occasional nap. You would never know she had open heart surgery less than 2 weeks ago. Amazing. Have I mentioned that yet?

Once again we would like to thank everyone for your messages, thoughts, prayers, positive vibes, and help during Ella's surgery. She is so lucky to have many, many people looking out for her!

I think what has amazed both Jen and I is the "new normal" our lives have become. Our daughters are truly happy. They love to eat and it doesn't take all the energy they can muster to fill their bellies. We both thought they were happy before, but after...well, after is another gift entirely. There is NOTHING a parent wants more then to see their child happy.

Before the surgery you are so busy worrying about everything, how much they are eating or sleeping, trying not to let them get sick, trying to make sure they gain weight and thrive, and most importantly trying to keep them happy. Without the surgery hanging over our heads, the feeling of true relief is unexplainable. We are so elated for Ella and her family. Enjoy your new "normal" with a happy and healthy little baby girl!!!

Ella's AVSD surgery is done!!!

Ella is out of surgery. All went well and she is in the Critical Care Unit. Mom and Dad are relieved and happy that it is over and she is recovering. When I get another update I will share with everyone. Thanks for your continued support and prayers!!!

A note from Ella's mom:

Ella's surgery went perfectly! It took less time then we expected and the surgeon only took about 2mins meeting with us afterwards which is a good thing! She is now recovering in the CCU with her puppy (who was able to attend the surgery as well - he even got his own hospital bracelet) and her amazing nurse Lori. Ella looks great, even with the many 'hook ups' she is sporting right now. Mom and dad are back at RMH for a quick break then will head back for more visiting. We are so proud of our tough little cookie! Thanks again to everyone for the kind messages.

Prayers for Ella

Ella is going in for surgery in the morning. I am 100% confident that she is in the right hands and that the surgery will end with the same results that Hazel experienced. Little people are the strongest people I know. Please say a prayer today for Ella's surgery to be a success. Pray for a divine energy to guide the hands that work with baby Ella, pray to help her parents gain strength to cope and nurture, and finally, continue to pray for them after the surgery is complete. Times can be tough when you are home, with a fragile baby, and the nurses and doctors have gone back to saving and helping other little people.

Ella is in our thoughts and prayers always and we will be sending out positive energy now and for the weeks to come...God Bless

Meet Ella...

I am honoured to introduce Ella!!!

I am also calling in the troops again as Ella will be having surgery at Sick Kids on September 13th. We need your prayers and positive energy to help this little angel get through some of the struggles ahead. I wholeheartedly believe that sharing Hazel's experience with you all was one of the best decisions we have made. Your constant and unconditional love and support for our baby while going through such a tough time was an insurmountable relief. Reading your thoughtful and encouraging comments nightly reminded us that there is something larger at work here and you are all a part of it. Ella needs you now and I know that she will be loved and encouraged just as Hazel was...THANK YOU!!!

Ella's mom heard about Hazel through a mutual friend and the nurses in the London NICU. Ella is facing some of the similar challenges that Hazel had to face at such a young age. She is another tiny fighter who is determined to beat the odds with a smile on her face. Here is her story...

Ella was born on March 22nd, 2012 at 36 weeks 4 days, weighing 4 lbs 15oz. She spent her first 4 weeks in the NICU where Hazel stayed. She was born with Down Syndrome and a heart condition called an AVSD. This heart condition is similar to the VSD that Hazel had. The challenge for Ella, like Hazel, is that she burns too many calories while she eats, which makes it difficult for her to gain weight. The challenge for her mommy and daddy is that they must feed her every 3 hours round the clock even though she is probably old enough to sleep through the night. As a parent who has gone through this exact situation, you do it gladly for your child because you know that is what is best for them, but you secretly pray for a solid night sleep. Although Ella is doing a fantastic job eating as much as she can, she is still not putting on enough weight. As a result she had to get an NG (feeding tube) until her surgery. She apparently doesn't like it and tries to pull it out all the time. Sound like anybody else you know?? Another feisty one...love it!!!

Ella is a VERY happy baby who enjoys playing on her play mat, having the occasional conversation with her toys and loves to be with people. She is impressing her parents and community daily by developing with flying colours despite her heart condition. According to the "Ages and Stages" developmental assessment for typical 4 month old children, Ella, when she was 4 months old, was in the normal to high range for social skills, fine motor, communication, and problem solving. She was in the mid range for gross motor, which is expected as she has low muscle tone and a heart condition. At a more recent appointment she impressed again. She chatted away and smiled at everyone, demonstrated her tummy time, rolling-over and fine motor skills. What an amazing little girl...great job Ella!!!

I think it is important to note that Ella's mom and dad knew about the challenges that Ella would face while she was growing in her mom's belly. They anxiously awaited the arrival of their little miracle, knowing she was a little different than other babies. Knowing she was going to need a little extra care and attention because of her heart condition. Embracing all that their daughter was going to offer them...and the offerings have been endless. She brings laughter, joy and tenacity to them everyday. Ella's parents encourage the education and advocacy of those with Down Syndrome or heart defects just as we do and are happy to be on the path to raising awareness and knowledge for all those with Trisomy 21.

Although we have not yet had the pleasure of meeting little Ella or her parents we are huge supporters of this family and one day hope that our little miracles will join hands and grow together. We will be praying for Ella and keeping everyone updated with her progress as she continues her fight and impresses all that she meets.

Good Luck Ella we will all be praying and sending positive energy your way as your surgery approaches....from your friend Hazel