Keep on keepin' on

Tears...lots of tears, LOTS!!! Some of my tears represent pride, some joy, and some - honestly - fear. I know what may be ahead for Hazel. I realize what the popular opinion is. I know what the statistics are. I am not in the dark about ALL of the things that DS may bring to our lives - Hazel's life.

I don't care! I am IN...ALL IN!!!

For all the scary, difficult things that MIGHT be in our future, there is just as much hope, joy and laughter. We have a bright shining light in our midst and I promise to fuel this light with every ounce of my being.

I am totally immersed in DS Awareness. I am watching videos people send me and reading the stories they have found. I love this. It is so powerful!!! Keep em comin'!!!

Here is a video of a little girl talking about her brother, Archie, who has Down Syndrome and was adopted. They are the sweetest together.

Gracin Black gives a speech at school about his little sister who has Down Syndrome (to view the whole article click here):

My Sister Amiera

Hi, my name is Gracin and I have two sisters. They both like music and love to dance. They really like to play with their dolls and read books. They’re learning how to ride a horse and both take swimming lessons just like me. My sisters are very much alike, but most people think Amiera is different because she has Down syndrome. Down syndrome means that a person has an extra 21^st chromosome; extra genetic information that other people don’t have. Most people think that having Down syndrome is bad. They think that Down syndrome is a disability. But my sister has lots of abilities. She’s helpful. She’s happy. She’s smart and she never gives up. She loves unconditionally and doesn’t search others for their faults. She is silly and funny and is never afraid to be herself. Amiera does do some things differently than other kids. She has lots of therapies. She goes to music, speech, occupational and physical therapy. She has a special dentist, ear and throat doctor, has had special people working with her since she was a baby. All these people have helped my sister reach new goals and become stronger and smarter. Each person who has Down syndrome is different and the problems they face are different too. Some have heart problems. Some have problems eating. Some need glasses like Amiera and others need hearing aids. Most are slower learners but all people with Down syndrome can learn. I watch my sister Amiera work really hard every day to learn to do things most of us learn easily. For Amiera, if you give her too much information, or want her to do too many things at the same time, it’s like a traffic jam in her brain. If we slow down the words we’re saying and give her a little more time to answer, she can understand much better.

People can be very mean to people with Down syndrome. For Amiera, sometimes the other kids don’t want to play or sit with her. Other people with Down syndrome are called mean names. These words and actions hurt. They hurt Amiera and they hurt those of us who care about her.

There are people in the world who chose not to keep their babies with Down syndrome. I think this is horrible. These babies are special. They can teach us lots and are really just like us.

Having a sister with Down syndrome has taught me to love others, to be grateful for who we are and not to judge others by how they look. I have to be more patient and understanding, and I have had to work hard for the things I want. I wish people would give Amiera a chance to show them who she is inside. I want the world to see people with Down syndrome as individuals and that they all have something to give the world.

Amiera is a true gift and we love her very much.

Thank-you.

Finally, this video reminds me so much of Hazel. I was smiling and crying at the same time while watching. Enjoy!!!

Thanks so much Alysha for sending these resources. Lots of great things planned for this month!

Stay tuned...

Kick Off for Down Syndrome Awareness Month!!!

October is Down Syndrome Awareness Month!!! Hazel is excited!!!

This will be an exciting month for us, not only in our home, but on the blog!!!

I will be featuring a series of posts to try and raise awareness for Down Syndrome. My goal is to inform as well as educate readers on living with DS. And, as always, to share the story of our sweet girl Hazel, in hopes that our readers will see that although raising her certainly has some challenges (surgeries mainly), Hazel experiences and reaches all the milestones that every other baby reaches. Please join us in the educating, raising awareness and spreading knowledge.

Share the links that you find interesting on your Facebook pages. Also, feel free to visit Chasing Hazel's Facebook page for regular updates. Please don't hesitate to contact me with stories or resources you would like me to include on the blog this month. We would love to hear from you....

I can only speak from my experience of having a child with Down Syndrome.

Just because Hazel has t21, it doesn't mean that she doesn't wake up during the night just looking for cuddles cause she's figured out that when she cries we come to tend.

It doesn't mean that she doesn't get really cranky when she is tired or hungry.

It doesn't mean that just as we are ready to take her visiting, she has a poop that I'm sure brakes records for just how far up her back it goes, ruining the perfectly adorable outfit that I had taken time to pick out, only to end up wearing the first sleeper on the clean clothes pile.

It doesn't mean that as we are trying to get her into the car seat she isn't throwing a fit so real and serious that I can't possibly get her to bend to sit in her car seat. She was serious, her voice was going to be heard.

She is a baby, just like other babies, and we are parents, just like other parents, trying to do what works to make sure we all stay sane. Some days it easy, other days you wonder how the universe saw it fit to deem you a suitable candidate to be responsible for a life other than your own.

I believe that in order to embrace difference and understand the world of special needs we need to listen, we need to educate, we need to understand and then finally to accept.

Watch this video, show it to your partner, your friends, show it to your kids. I am wiling to bet your kids know more about special needs than you think. Here is a perfect video for younger children.

Let Down Syndrome become a topic of conversation in your homes. Let it into your life, you never know when you will be called upon to act, to protect and to love. We certainly didn't...

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

VSD Q & A

Back by popular demand...

 

I have put together a post with some of the questions my readers have about what a VSD is and the VSD surgery that Hazel had at Sick Kids. I can only answer based on our personal experience, I hope it helps to ease stress and make the transition easier before and after your child's surgery.

1.  What is a VSD?

According to A.D.A.M. Medical Encyclopedia, Ventricular Septal Defect describes one or more holes in the wall that separates the right and left ventricles of the heart. Ventricular septal defect is one of the most common congenital (present from birth) heart defects. It may occur by itself or with other congenital diseases (PubMed Health). You can read more about the symptoms and causes here, here and here. This is the heart defect that Hazel had.

2.  Are babies with Trisomy 21 the only babies that have VSDs?

No. Not only babies with Down Syndrome can have VSDs, although the occurrence is higher amoung those with Trisomy 21. Actually, the most common congenial heart defect for those with Down Syndrome are AVSDs. Children with Down syndrome are at a much higher risk for congenital heart disease. The incidence of congenital heart disease in the general population is 0.8 percent. The incidence of congenital heart disease in children with Down syndrome is between 40-60 percent. Read more on the National Association of Child Development website.

If you have not read the posts that I have done so far, feel free to get more information specifically about Hazel's surgery here. I will say again that this was our experience and may not necessarily be yours. Good luck!!!

These next questions were not addressed in the last post so here they are now...

3.  For the days of pre-op appointments, how long did those take?

Our Pre-op appointments were all in one day. Her surgery was scheduled on the Wednesday and our pre-op was on the Monday. We were sent a detailed package about where and when to be at the hospital, including an itinerary of all the doctors we needed to meet and tests we needed to do. Sick Kids was great about accommodating the fact that we lived out of town and tried their best to get us appointments so we wouldn't have to go back and fourth too many times.

In our case, we started with a sedated Eco cardiogram (that Hazel had to fast for - 4 hrs for breast milk feeding). Followed by blood tests, x-ray, and several meetings with doctors and nurses who explain the steps and the risks of the surgery, scary but informative. The x-ray was shocking. A picture of what it looks like, which I found here...

The day was very long and tiring but it was nice to get it all done in one day.

4.  While you waited for surgery did Hazel stay with you at RMH those nights, then was admitted the day of her surgery?

Yes. We all stayed at the RMH from the Sunday to the Thursday when she ended up having her surgery (it was postponed one day, which Sick Kids assured me often happens right up to the day of the surgery). They can provide cribs upon availability, but we brought her pack and play. The Ronald McDonald House is about a 5-7 minute walk from the hospital, in downtown TO. Not really safe to walk alone at night. Matt had to walk me back and we would have to make sure the nurses watched Hazel while we were gone. It was very difficult to leave her as the nurses were not one-to-one while she was on 4D. RMH is in a good location and very affordable ($15 per night). I hear they book up fast so we got lucky and were able to stay there. I would have a back up plan just in case. The Delta Chelsea is close by and offers rates for Sick Kids, also there is Super 8, I believe.

5.  How did her feedings work? Was she kept relatively on the same schedule during the pre-op days, and then after surgery, how long was it until she was ready to bottle again?

Hazel was a difficult baby to put on a feeding schedule because of her fatigue while eating. Also, we were not at home so we tended to just go with the flow. When she was hungry she ate, when she was tired she slept (mostly in her stroller while we were walking around outside) and things went well that way for us. There is a great little street called Baldwin right down the street from the RMH. It offers great restaurants, with big patios, which were great for accommodating our stroller.

Hazel pulled her feeding tube out right away after surgery and it never went back in. She did not end up needing it at all. She was ready to bottle feed the day after her surgery. Before that she was on IV fluids to keep her from being dehydrated. The first time she ate she took about 2 oz. After that we just demand fed her. When she was hungry she ate and we never knew how much that was going to be. It was great having breast milk to use as it lasts longer once heated. The nurses were not concerned she wasn't taking in enough so the feeding tube was not needed. When we were discharged she still wasn't eating as much as she was but they were not concerned. It took her about a month at home to get back on to a consistent routine of eating. For us it was a long process to get her back to a schedule but we didn't try to push it at all. We let her be our guide.

6.  What was the deal for visitors (aka non-parents?). Are any allowed or are they pretty strict? One thing I've heard from others is that sick kids is pretty different from London NICU Pod A?

Yes it is different from London. When Hazel was in the Critical Care Unit she was allowed to have one visitor at a time by the bedside, maybe two if only one parent goes in. The nurses are good about letting you know if the baby is up for a visit or not. Also, there are other babies in the same room. If one of them is having a procedure done they won't let anyone in, even the parents, at that time. This did happen to us while we were there and we were not allowed to see Hazel for a couple of hours. You have to call into the unit every time to want to go in so they can check to see if visiting is allowed.

When we got to our own room our families were all gone back home. I am not sure what the visiting policy is for 4D. I am sure visitors are allowed at this point as you are in your own private room. Also, you are allowed to take the baby out of the room (if they have the monitors detached) as long as you tell the nurses that you are doing so. Once you are in your own room, you can't leave your baby at all. They do not have one-to-one nurses at this point.

7.  When you pump do they store / manage your milk (like London NICU did) or were you on your own for all that?

Pumping is like a dream at this hospital!!!! I thought I died and went to lactation, pumping, nipple heaven!!! Seriously, it's that good. Those of you who pump will fully be able to relate to this comment once you hear what I have to say. I know its hard to imagine that pumping can be enjoyable but bare with me...

First of all, the pumps they use are the best pumps on the market (Ameda) hospital grade pumps. In layman's terms they are the Cadillac of pumps, a smooth, even, built for comfort and luxury ride the whole time. Second, they provide all the pump kits for you at NO CHARGE. Fair seeing as how pumping is actually one of the worst ways to spend your time, and sometimes you have to pay to do it. Not cool!!! It's a good thing breast milk is priceless. Third, and by far the best thing about their system, is that they wash and sterilize all the pump kits for you. Yes...that's right...they clean and sterilize everything!!!! You just go get the pump and the kits whenever you are ready and drop them off when you are done. Then the little pump fairy comes and takes care of everything else (I imagine this fairy has huge boobs and enough breast milk at all times to feed an African village, if only she were real). The nurses take and store you milk. It is genius!!! Sometimes I had to wait for a pump but very rarely. You can pump by the bedside in the CCCU (ICU) but I don't think it is easy to find a pump. If you ask the nurses they will help you, or if you see a pump that no one is using in the hall claim it. That is what I did and no one took it from me. I just pulled the curtain and pumped in the unit next to her bed. Pump rooms are available on a first come first serve basis.

They have bottles and bottle warmers there for you to use as well. If your baby is on a specific bottle system that does not have a fairly standard nipple I would bring your own bottles. Hazel was fine with the hospital nipples so we just used all disposable ones. Cleaning bottles would have been tricky, but manageable if you have to, in the bathroom of your room.

Side note: When the nurse was explaining this pumping phenomenon to me at the pre-op appointment I couldn't believe it. I kept repeating over the course of the meeting, "So let me get this straight...you guys wash AND sterilize all the pump kits for me?" or "Like what do you mean, I don't have to buy any pump kits?" or "So...I just go pump and then leave all the stuff for the nurses?" Yeah, I think it is safe to say that she thought I was a complete idiot, with very little capacity for information retention!!!

8.  Did Hazel just want to rest a lot and lay low? I know I read that she was not sleeping as well at night. What were her days like?

I want to express here that every baby is different and I can only speak on Hazel's behalf. Hazel did not know what she wanted after her surgery. Either that or we didn't know what she wanted?? She was very uncomfortable for about 4 weeks post surgery. The first two weeks were the hardest for us. She cried about 90% of the day.

She barely slept, day or night, and so neither did we. When she was awake she screamed in pain the whole time. Matt and I would take 15 minutes shifts holding her while she screamed trying the best we could to calm her down (sometimes it was impossible). When she did sleep it would be for very short times, about 45 minutes was the average during the day and maybe a full hour and a half at night. From talking to doctors and nurses, I think it is normal for babies to revert back to new born patterns of sleep because they forget how to console themselves briefly, and are in too much pain and discomfort to relax enough to get into a deep sleep. (Note: It does get better and they do learn how to self sooth again, even though while you are going through it, it doesn't feel like they will).

I remember countless walks outside, just in the backyard, to keep her calm and singing Adele's "Someone Like You", over and over and over again. That was the only song that worked. We did notice about week 3 she started to sleep a little longer and was happier for longer periods of time while awake. I don't remember how much she ate exactly but I know we just fed her when she seemed hungry. We tried 3 oz first and if she wanted more we gave her more. We just went with the flow, her appetite was pretty good but nothing compared to what it was before. Eventually she just started eating more and more.

That being said, I believe there are two unique reasons why Hazel had such a hard time with her recovery. First, the nurse practitioner in Toronto didn't prescribe the right dosages of Tylenol and Advil to her. Therefore, Hazel was in a lot more pain than she should have been. A quick call to our cardiologist practitioner in London and that problem was sorted out. My advice to you is to call there and ask what the schedule for pain medication should be so that you can get it sorted out right away and save your baby some pain. It doesn't hurt to have opinions from both hospitals.

Second, Hazel was on a stool softener because the medication for sedation and pain were causing a blockage in her bowels. We were sent home with instructions to keep her on this as long as we had to. Her stools were loose but we were not sure if the blockage had passed or not so we kept giving it to her. I didn't know at the time that babies with down syndrome sometimes have issues with their bowels. Hazel does not happen to be one of those children, and was essentially taking the medication for nothing. It was causing her severe discomfort along with a serious diaper rash. We brought her to the ER in Windsor and an x-ray showed that she did not have a blockage, just a lot of gas. About 5 days after discontinuing the stool softener, she was like a new baby.

I think what the most important thing to know is, you know your baby the best!!! You are the advocate for them and they need you in situations like this. Do not be afraid to ask questions and make sure all the medications given are necessary and in the right doses. If you don't feel comfortable with something, get clarification. Sick Kids was great about answering questions, but when we were there we didn't have any. They were also good about taking calls post discharge. Use the resources that are available.

Hopes this helps...Good luck with your little ones!!!!

Rolling Over???

Now that Hazel is feeling up to it and she has no restrictions on movement, we have been getting back into physio. Hazel rolled over for the first time a while ago, and then continued to do so until she had the motion perfected. She could cover quite a bit of ground pretty quickly before her surgery. Now that she has been laying on her back for the better part of six weeks, she has become, let's say "comfortable" with remaining on her back at all times. We are often met with resistance when we put her on her tummy to strengthen her neck and chest muscles. We have been putting her in her Bumbo chair (rest assured it is not on the kitchen counter and she is not unattended while she is in it) to practice sitting up. It has been doing a great job helping her to gain her neck control back.

As you can see she is capable of holding herself up...

...so I can never understand why she gets so upset...she DOES know how to roll over...but why should she...right???

Eatin' and Doing Some Physical Therapy

We are just about back to normal here now...Hazel has never been happier!!! We have been enjoying the rest of our summer, trying to visit with family and friends. It has been so nice to enjoy the weather going for walks with Nico. Our steps seem to be lighter these days with the surgery out of the way. We walk with ease and peace toward the bright future our girl will show us. We are totally accepting and open to all she will add to our lives. Our little girl is content and comfortable. I have never seen her smile more. She smiles all the time...at nothing...just in case you look at her. My heart is smiling right along with her!!!

We are still introducing all kinds of yummy foods to Hazel. She really enjoys eating and is becoming quite good at it. She doesn't waste a drop. Even the food that ends up on her hands eventually makes it to her mouth. She loves sweet potatoes, green beans, pears, bananas, and avocado. So far everything we have given her is well received. She loves to put on a show in her chair, talking and eating at the same time. My favourite is when she blows and spits the food back in my face while she is eating. It doesn't happen often, as she doesn't want to waste, so I find that I am constantly on guard for that moment when I end up with a splatter of green beans across my face. She likes to try and do it herself already....so my fear is continually getting stronger for the battle of wills to be had in our future!!! She loves her Nonna and, of course, Nonna will let Hazel do whatever she wants!!!Here we have tricked Hazel into doing her physical therapy. The Bumbo is great for getting her to practice sitting up. I just put it on the play mat so that she can reach out and play with her friends. I find this extends the time she will sit in here by at least 10 minutes. After the surgery, she was used to laying down all the time so she lost a little of her neck control. This was really effective in helping her to get it back. A few minutes a day and she is back to hold her head up high. I will post again soon about the other things we do to work on sitting up and core strengthening.

Sigh of Relief

Today I write in relief. I write in peace. I write with ease and calm. I am truly excited about what the future will offer, what it has in store for us. Finally!!! The road has been arduous...

I am not a skilled enough writer to put down into words how difficult it was some time ago to hear that our 34 week old fetus was going to need 2 surgeries very close to birth. What I can tell you is that Matt and I spent 3 entire days in bed. Neither of us could work, eat, shower, brush our teeth, speak, the list is endless. We were crippled. One thing we knew, is that neither of us could tolerate, for even one second, to be apart. We strengthened each other somehow, even though we were both broken individuals, hopeless. No hope for the future, no hope that our baby was going ever going to be healthy, or survive for that matter, no hope that our baby was not going to have Down Syndrome. Yes, there was a time where it was very difficult to accept that our baby might have Trisomy 21 (T 21). I don't have the strength to discuss that now, but I hope to one day write Hazel's birth story. Her story started long before I was pregnant, another very challenging time for us.

Here we are 7 months later with our little baby girl, Hazel. As my eyes blur with tears and roll down my cheeks, I reflect. That same fetus that seemed so weak now has a face, and a name, and a smile. Most importantly, she is the farthest thing from weak. On the contrary, she is the strongest person I know (tears are uncontrollable at this point). Yes, she has T 21, and yes she had 2 surgeries before six months of age. But weakness is not part of her genetic makeup. I am hard pressed to believe that weakness is a part of anyone's genetic makeup, especially those with Down Syndrome. Hazel is thriving, and growing, and meeting milestones. The joy and hope she brings is tangible. It is an object in our home. It is real. She is real.

I have full confidence and trust that Hazel knows what is best for her and that she will, at all costs, demonstrate determination to persevere and succeed. She chose us...how lucky could two people be to gain such a priceless commodity. We have access to PURE JOY and EVERLASTING HOPE. Hazel...what a miracle!

VSD Update from the Bosses in London

The verdict is in...

Hazel is PERFECTLY HEALTHY!!!! YAY!!!! YAY!!!! YAY!!!!!

Hazel has put on a whole pound since her surgery and is now 24 inches long. She enjoys eating now and often her legs and arms start rapidly swinging and kicking when she sees that the bottle is in view. We have noticed that she is not as fatigued as she was in the past. Lucky for mommy and daddy, Hazel doesn't take as many naps as before...uh oh!!! She, also, seems genuinely more comfortable and less irritable. The change is wonderful and nice to see after the crazy two weeks we have just entertained.

In terms of her heart, it is perfect. There are no leaks from the hole, no swelling or water retention around her heart. Her chest x-ray was the best the docs in London have seen in a while. They were very pleased that she got the surgery done and over with so fast and that we can all move on with our lives. We have been able to take her off her diuretic medication and she no longer has to have fortified breast milk. We are excited to start her on solids soon. Moving forward, we only go for check ups in London every 6 weeks and those visits will be lengthened in time. I will do a recap of the surgery and what to expect after for those readers who may be facing a similar surgery in the future.

We are so excited to move forward and are excited for what the future will bring. Even though it will bring more challenges, we don't know what or when those will be. Right now, in the present moment, we just live. That thought is liberating. Now we can just grow together. The next time I leave this house with a bag packed you can guarantee that it is NOT going to be to go to another Ronald MacDonald House!!!

It was fantastic to see one of the nurses, Marie, from when Hazel was in the NICU. It was really nice of her to come and catch up with us even though she wasn't working. She will always hold a special place in our hearts for all that she did for Hazel while we could do nothing.  

Hazel Post VSD Update

Hazel has finally started to feel a little bit more like herself these last few days. Thank goodness!!! She is almost back to being a smiley, happy, content little baby who likes to play with elephant and chew on her blankets. She has started to be comfortable rolling from side to side, however not quite well enough to roll onto her stomach. She has rolled a couple of times, but I think she has figured out that that hurts a bit so she doesn't do it anymore. At least she stays put for a little while now! Her stomach is still upset most of the time, she is still really gassy, so hopefully that will work itself out soon.

I have taken some pictures of the only activity that takes her mind off her pain. Being outside. So, several times a day (when it is cool enough) we go walking in the backyard so that she can grab the plants and flowers that are growing there. Hazel is absolutely enthralled by the greenery. First, she reaches out with her hands, then both her feet, and eventually she tries to pull the leaves off and get them into her mouth!!! I love watching her do it...she is totally focused the whole time.

See...she is trying to be happy!!!

A Beautiful Family...

Tell me this isn't one of the most beautiful families that you have ever seen??? Hazel got to meet two exceptional boys a little while ago, Joshua and Patrick, along with their brother Alex and parents, Bruce and Carolyn. They came all the way from Calgary to meet Hazel. We swapped stories about heart conditions, feeding and muscle tone. We concluded that we are all proud of our children and all they have accomplished so far. Hazel will be a lucky girl to turn out just as these two boys have.

Joshua and Patrick were very excited to meet Hazel and to tell us stories about what they are learning in school and what they want to be when they grow up. They are 13 and going into the 8th grade. Both boys are in a swimming program, called Dolphins, and are excelling in this sport. They are able to swim several lengths of an Olympic size pool. Their brother Alex was always quick to share a laugh about growing up with younger twin brothers. Over the course of the visit, there was very little time spent without a smile or laughter close by. Hazel enjoyed showing off for all three boys and they were quite content to let her. We are a bit nervous about what that could mean for Hazel...

Post VSD Surgery Day 3- The nurses had a plan...

Well we all know how Hazel likes when the nurses have "a plan"!!! I came in this morning for my shift at the bedside with Hazel, after her daddy spent all night with her, to find that she had kicked out the IV line in her foot, so it could no longer be used. The nurses came in and had to take out that IV line right away. And because Hazel loves having people poke and prod her, she immediately went into quite a state of rage. To give you a good idea of what this scenario looked like, it was myself and 2 nurses holding Hazel down. Again, she must have forgotten that she had Down Syndrome. Once completed with that task, they looked at the central line that was in her neck, as they needed to take more blood. Somehow, Miss Hazel, had pulled that one out as well!!! So they had no choice but to take that one out too. Hazel continued kicking and screaming the whole time.

On the way out the door the nurse looked at me and said, "well...I did have a plan when I started my shift, and that wasn't it!!" Ahhhhh, that's where she went wrong. Hazel doesn't do "plans"!!!

Needless to say, Hazel's IV lines have been pulled, one step closer to going home. Her pacing wires are also out, because why not? All her medications have been reduced and after her Echo tomorrow, they will see if she is ready to be discharged. Hoping all goes well and we will be over this hurdle soon too.

Day 3 and 4-When in Toronto...

Well when life gives you lemons... Since we are in Toronto anyway, and almost our entire families are here as well, we decided to take in a few sights, do a little shopping and have a few meals on a patio or two. Hazel is always making excuses for us to stop and enjoy the present moment and this has been no different. Although there is a very serious surgery coming tomorrow, today we have a whole day to embrace our friends and families and enjoy that they have all taken time out of their busy lives to be right by her side and support her ever step of the way. Between having a huge support system present and all the thoughts and prayers of our readers, Hazel should be all set!!!!

A funny story...

We were at a Chinese restaurant having some Dim Sum, of course, we had Hazel with us. She was a very good girl who spent most of the time sleeping. Towards the end of the meal she woke up and we took her out of the bassinet just as the little old Chinese waiter came to clear the table. He looked at Hazel, then at Matt and I, then back at Hazel. This went on for longer then was appropriate and you could tell, something wasn't adding up for him. So he says, "Oh she is so cute!! She looks like she could be Chinese!!!" Then he looked at us as if we needed to give him an explanation. So then in all my infinite wisdom I say, "Nope, that's just the Down Syndrome!!!" We all shared a laugh, although I am still not quite sure he understood what I was saying.

...hey make lemonade!!!!

The pic above is of Hazel's Entourage today in Toronto!

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Hazel Continues to Impress

Have you heard of the John McGivney Children's Center? We are lucky enough to live in a community with an amazing resource to help parents with children like Hazel who just might need a little guidance to keep them on the right track. They help children with Trisomy 21, as well as other children with special needs. We are grateful for their expertise and guidance. They have proven to be a great support to us as we try to do our best to raise our daughter.

We had a visit last week from the speech pathologist. She came over to make sure Hazel is on the right track with early language development. Her goal was to offer suggestions and learning strategies for us to use to help Hazel continue to develop new skills to the best of her ability. Upon her arrival she was surprised to find such a strong and healthy looking little girl. A far cry from her days in London. The description of the baby in the file she read was not the same baby she came face-to-face with. She was very impressed with Hazel and all her accomplishments so far.

It is common for children with Down Syndrome to have difficulties with speech. One of the reasons they experience this can be due to low muscle tone in the jaw. So far, Hazel seems to be ahead of the game in this regard. Her muscle tone is very good and she has begun to babble and imitate, skills a 6-9 months old baby can do. The speech pathologist was shocked to see her progress so far.

We don't know what future challenges await Hazel, but we are proud of the milestone that she has achieved. We are never looking at the things Hazel can't do, but celebrating the things that she can!!

Here is an example of how vocal Hazel is. She is perfectly happy in this video by the way...

Nobody told Hazel she has Down Syndrome...

While Hazel was in the NICU in London, one of her nurses, Marie, and I were discussing Down Syndrome and the impacts that it may have on Hazel, particularly the low muscle tone aspect. It was then that Marie began to tell me about when they were getting Hazel ready for her bowel surgery. She was only 28 hours old and being prepped for a major surgery which included an IV line for anesthetic. Marie proceeded to tell me that Hazel was not happy with this idea at all. She screamed and carried on, pulling and kicking so much that she had to really hold her down in order to get the job done. Marie looked at me and said, "Hazel has Down Syndrome, but nobody told Hazel!" Since then, it seems, Hazel has been making it her mission to prove to the world that babies with Down Syndrome can do all the things that other babies can do, even if it takes a little longer. In regard to her muscle tone, the physical therapist came to visit Hazel a couple of weeks ago and she was very pleased with her progress. Hazel holds her head up balanced (I think she has success here because she is so nosy, always trying to look around to see what is going on), she can reach and grab her feet, she can lift her head up 30 degrees when flat on her stomach and 90 degrees when we prop her up. She can roll over from her back to stomach, also from her stomach to her back, and has been practicing how to sit up with support. She can manipulate, grab and hold her toys. Hazel enjoys having conversations, which include pleasant cooing and smiling, with her elephant. But, as for Owl on her play gym, I feel bad for him because she kicks him around a lot and yells. I guess we can't expect her to get along with everyone!!!

Here is what we very often see when Hazel is in her bassinet...this is how we know she is awake!!!

I can roll over!!!

Hazel has been getting very strong the last few weeks. She can roll over...YAY!!! I was so proud to see that she is developing her muscles and knows how to use them. She can hold her head balanced most of the time and has been doing really well with tummy time. Her motivation to look up is just to see her daddy's face smiling at her. She is so strong and continues to get stronger everyday. When she is awake, Hazel is rarely sitting still...her legs are going, her arms are going, and usually her mouth is going too.

It is such a good feeling to see how far Hazel has come. As she gets older her personality is becoming evident. She tries her best in everything she does and is determined to prove to the world that she can do anything. We could not be more proud. We are so excited to grow and get stronger together!!!

Look how big I am now...

Time is flying by here in Windsor, Hazel is now 8 weeks old. She weights 7lbs 3oz and is doing well. Her heart condition is making it a little bit difficult to eat at times but she is doing great. We are still going back and forth to London to visit the cardiologist (and the nurses in the NICU) to make sure that Hazel is thriving and able to gain weight. Hazel continues to impress doctors and nurses with her progress. Her VSD, although moderate to large in size, does not seem to be slowing her down. She is gaining weight faster than they would have expected and managing her breathing perfectly. The cardiologist is 99% certain she will need surgery when she is 6 months old to repair the hole, however at this point there is no need for early intervention. What impresses us about Hazel is her ability to make every single person that crosses her path smile. Even if that person only has one second of contentment in their lives that particular day, we are glad that it is Hazel that can bring it to them.

We can't believe how fast time has passed, although in a way it seems like yesterday that we had her. More shocking to us is how much has changed in our lives in the last 8 weeks. I think babies make us realize just how much can be accomplished in such a short time, especially babies like Hazel. Constantly evolving, growing and adapting, despite all the challenges they have to face and overcome. Too bad people can't carry this flexibility with them forever. The unknown has brought us so many joys and so much happiness.

We are so glad Hazel has taught us to embrace the unknown and to be present in all the things we do. There are too many moments to miss out on if you are constantly living in the future or the past. So, at our house, we are busting with happiness in the good times, wallowing in pity in the sad times and gritting our teeth and swearing under our breath in the frustrating times. Either way we are living life one minute at a time trying to enjoy and appreciate the blessings we have been given.

These photos are proof that Hazel does cry and get upset at times. She has a little flare for the dramatic!!!