Day 1 - The drive had its ups and downs...
/So we started out and all was well with Hazel...
Heading to Toronto...
/Today is the beginning of a very challenging week for Hazel. We are heading to Toronto where Hazel will begin the process of getting her heart surgery. She is going to have several long days ahead. Most of which I hope she sleeps. Fingers crossed. Here are some pictures of her from this past week. She is always getting into something!!!
If she would just sit still for a second this wouldn't happen...
Not sure if you can tell but she is being very vocal about something in this picture...and I don't think she's happy...
Heart Surgery Booked
/The big day is near...July 11th. Hazel will be getting her VSD repaired in a little over a week. Although this news is good, we can't help but feel apprehensive and nervous about what we are about to face. Memories of the NICU in London are not that far behind and the wounds are still fresh. We are confident that the medical staff at Sick Kids Hospital in Toronto are the right people for the job and that they will look after little Hazel diligently. We have a busy week ahead of us preparing for the surgery, Hazel will have to undergo several tests before it can be done. We can't bare the thought of putting our Hazel through another surgery, this time a little older, but are relieved that she will be able to live without such a fight moving forward. She will be able to be a regular little girl with no heart problem to weight her down. We are excited to see all that she will accomplish while functioning at 100%...she has done nothing short of impress so far.
You have been such a great support to us so far and now we are calling upon you once again for prayers, thoughts, and positive energy. Hazel has done so well with all the encouragement she has received and we could not be more grateful for your involvement. I truly believe that it takes a village to raise a child, and there are no better villagers than the ones that we have been blessed with. Thank you!!!
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...
Happy Video Friday!!!
/Visit to the Cardiologist
/So, last visit to the cardiologist (which was a couple weeks ago) we learned that Hazel was 10 lbs 7 oz. She had a great weight gain since the last visit. Hazel jumped up a percentile on the growth chart. Now she is in the 50-75 percentile for weight, when she was on the 10-25th (at one point she was on the 3rd). Way to go Hazel!!! She is 59 cms long, 3 and a half cms growth in 4 weeks. The doctor is very impressed by her weight gain and continues to praise her for her efforts. The staff in the doctors office ensure us that Hazel is always a pleasure to see. She brings a smile to their faces every time! While giving her her heart ultrasound, they did notice that Hazel has a muscle developing in the right side of her heart due to the overexertion. This muscle is helping her right now, so it is not a problem, but will definitely need to be surgically corrected along with the hole. We are still patiently waiting to here when the surgery will be, but the doctors are confident that Hazel is doing wonderfully and are not worried about her. So...
We will carry on enjoying our little angel and making sure that she is eating and gaining the weight that she needs to in order to stay above the curve and on the right track. Thank you to everyone for the thoughts and prayers, we would not be where we are today if it wasn't for all of your positive energy and thoughts!!!
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!!!
4 months old...
/Hazel is growing so fast. Its hard to believe she is four months old already!!! With every passing day Hazel gets stronger and stronger. At our most recent visit to the paediatrician, we discovered that Hazel is 10lbs 4oz!!! She is 59.8 cms. She has made a significant jump in weight and the doctor was very shocked and pleased. We were very proud to hear that she is doing so amazing despite the hole in her heart. I guess we will wait and see what London thinks...
I love that she even leaves the paediatrition amazed with her. That's Hazel!!!
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!!!
I'm a big girl...
/As you can see, as the time goes on, Hazel's cheeks seem to be getting chubbier and chubbier. Also, her double chin is much more evident than it was in the past. That is because she is a whole 9lbs now!!! On our recent visit to London, the doctors and nurses were very impressed with Hazel's weight gain (gaining over 20 grams each day). Last visit she only gained about 10 grams per day. It was a big improvement. The doctors are always impressed with Hazel's strength and muscle tone. She continues her fight to try and change opinions where low muscle tone is concerned. At home her eating is becoming much more consistent, now she is eating about 3 ounces every 2 - 3 hours. Her leg almost has a roll. The doctors are going to present her case to the surgeons in Toronto and hopefully let us know what the timing will be for her surgery. For now we carry on, because Hazel seems to have it all under control for the time being. Keep the prayers, thoughts and positive energy coming. It seems to be working.
Hazel is getting much more vocal these days. Sometimes we hear the quiet coos of a young babe, and other times we hear a sound I can only describe as an angry cat. An angry cat that likes to yell, specifically at her mother, for random things like food, or freedom, or a clean butt, or food...
Hazel is also beginning to enjoy her space and freedom to kick around and talk to visitors. Her neck control is coming along nicely. She can hold her head up balanced most of the time. When she is free her arms and legs never stop. She is constantly trying to suck her thumb, but can't quite figure out how to get the thumb to stay in her mouth. Hazel is beginning to pull herself up with her arms while lying down. She is very determined to demonstrate her strength at all times. We are so proud of Hazel and her progress. She amazes us a little every single day with her fight, will and determination to be stronger than the day before.
It's not all smiles all the time...
Hazel is way to long to fit into the baby tub, so now she is in the grown up bath...she loves it!!!
Look at me go...
/Hazel is getting more active these days. She likes to have the freedom to stretch and move with no constrictions. I am scared for what this might mean for her personality moving forward...
Hazel started like this, and in 10 minutes...
ended up like this!! I think she is wondering how she got there...
12 weeks and counting...
/Well, 3 months old and Hazel is a whopping 8lbs. She has grown 2 cms in 2 weeks and is now 57 cms. She continues to gain weight slowly but surely. Our most recent visit to London left us proud of our little girl and her continued progress despite all that she is up against. Hazel is only gaining about 10 grams a day at the moment, (ideal would be 30 grams) but she is gaining and that is all that matters. She seems to be growing more in length, than in weight. Maybe she will be able to dunk??? Honestly, I wish I could say that would surprise me.
The cardiologist is impressed with her ability to maintain her weight despite the 6mm hole that is in her heart. This hole essentially makes Hazel feel like she has run a marathon with each bottle that she has. The good news is that the hole does not get bigger as her heart gets bigger. The hole is staying the same but her heart is growing. Surgery is still in our future, but we have not been given a date as she seems to be tolerating all her oral feeds and gaining weight. Keep the thoughts, prayers and positive energy coming our way for little Hazel, you have all helped to get us this far. We know that we could not have come this far without all the love and support from friends and family and I can't say enough how much we appreciate it.
Here are some random pictures of Hazel just hanging out around the house. Enjoy!!!
I know some of these are blurry but I had to add them...Hazel just hanging out on a Sunday morning
More smiles...this time some were for mommy!!!
/So apparently she will smile for her mommy. As long as daddy is standing there too!!! There is truly nothing better than looking into these eyes and seeing this face. Hazel is a riot. Happy Friday everyone!!!
We are still laughing everyday...most of the time...
I don't think she likes this hat...just sayin'
Hazel's 10 weeks old...
/WOW...time is flying by!!! 10 weeks already. Hazel has made such an easy transition into our lives here at home. After getting the green light from the nurse in London, she is starting to sleep through the night (of course this is entirely subject to change according to whether Hazel feels like it or not). Hazel continues to gain weight at a great pace for a baby with a VSD, so we were told that we can let her sleep and eat when she wants. Hazel is now 7lbs 11oz and 54 cms long. I feel like Hazel likes the new plan, since now she is the boss of us even more. Her daddy and I COULD NOT be happier about that, although we do enjoy the sleep when we get it. It has been said that Hazel is such a content little baby, that she is so even tempered and calm...and to that I say...you would be too if your parents gave you everything you wanted, when you wanted it. She owns us. I am not sure if I am proud of this or ashamed. In our defense, I am pretty sure she owns everyone at this point. Now with the smiling, watch out!!
Look how big I am in the bath now...
Chubby cheeks...
If you could only hear the sounds coming out of her butt...
No one is happier than Nico...
clearly...
Hazel loves her daddy...
/I can't tell you how much it warms our hearts to have seen our Hazel smile for the first time. With all she has had to endure, she still manages to be as happy as can be. Even though her heart and lungs are working in over time, she is still maintaining her normal intake of food and still has the energy to give her daddy and I smiles. Her smile is the most beautiful site we have ever seen (and we've been a lot of places). In typical Hazel style, her smile lights up her whole face. She smiles not only with her mouth but her nose, cheeks, eyes and even her forehead. Hazel exudes happiness all the time, but now that she can smile she can communicate just how happy she is.What an amazing feeling! I am not sure who is happier her, or us. Oh...I guess it doesn't matter as long as we all keep smiling 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!!!
Car Seat Challenge...
/So the nurses decided to challenge Hazel again. In her true form she passed!!! The thing about this challenge was that most babies go in the seat for 90 minutes. Hazel had to sit in hers for 120 minutes because the monitor messed up after half hour of her being in there. Still she did just fine. Passes with flying colors.
Here are some of the action photos.
Look Again Mom...no tube...this time I didn't pull it out!!!
/Here we are again presenting another challenge to Hazel. Since she kept pulling out her tube we thought we would keep it out and see if she could orally eat all of her meals. Now that she is 5 weeks old and 6lbs 11 ounces, she is a big girl and seems more earger to eat. She also spends more time awake during the day. Actually, she is VERY nosy and likes to check out who is coming and going at all times. Now keep in mind that this is just an experiment, another challenge, if you will. We really were not sure how she would do with this since she usually needs at least one of her full feeds still in a tube. I am convinced that she knows that she will get tube fed and chooses to be lazy about eating. She is a very bright little girl. Who wouldn't want to be tube fed if they could get a couple extra hours sleep. I know I would for sure, especially now.
The verdict is that she has taken every single meal in the last 24 hours orally. That is the most she has ever done and yet again has managed to shock the nurses and make her parents very proud. We are hoping that she will continue on this path as we take it one meal at a time. She will continue to set the pace and we will be here to support her.
Here is hoping that she continues to have the stamina to eat orally so that we can come home.
Look Mom No Tube...cause I pulled it out...twice in one night...
/Yes that's right...Miss Hazel pulled her feeding tube out twice last night on the nurse. When I went in the morning to feed her, this is what she looked like. So we thought WOW maybe she wants to eat all her meals orally from now on. We took it as a sign that she was ready... So, when I went to feed her, she looked like this photo, the whole time. She would not wake up to eat no matter what I did. Needless to say we had to tube feed her this whole meal. Apparently she is all talk, which could bode well for us as she gets older. But for now the feeding tube has gone back in.
What an adorable face she has with no tubes in it. Thought I would share.
Nobody Puts Baby in the Corner
/So Hazel is 4 weeks old now...crazy how fast time flies!!! She is now 6lbs and 1 oz. She seems to be gaining about an ounce a day. She is making great progress still. Everyday she seems to get stronger and stronger. Her stamina is increasing daily and she seems to be on a mission to prove to the world that she is capable of just about anything. She is the coolest!!!
She is mastering the art of breast feeding, which is a difficult task, especially when she has an unrealistic expectation that 3 sucks will automatically fill her belly and she will be done. So, she has forced my hand into manipulating her to thinking things are easier than they are. Hazel needs a little incentive to get working, but today she took half her feed from me in about 10 minutes (which is a far cry from 4 mls in 40 minutes like when we started). For the last 2 days she has taken 2 full feeds in one day, either breast or bottle. Today, we fed her her whole meal and she carried on until we gave her a little more. I can't tell you how happy, and relieved, it makes us to see that she has a good appetite and wants to eat and eat AND eat. So the goal is to get her to eat all her full meals, which is 8 per day (with a weight gain) so that we can go home.
Personality wise, she is really developing. She has no problem letting you know when you are doing something that she doesn't like. Her dirty looks are very entertaining. She is developing quite the attitude problem at times. She seems to have a flare for the dramatic as well so we are looking forward to see how that develops. She has this little cry/yell she does just so you know that you are really annoying her. Of course, it makes us all laugh so I don't think she is achieving her goal in getting us to stop. We can't wait until she can yell at all of you when we get home...why should we be the only ones to deal with that!!!
By far the most amazing thing about Hazel is her ability to humble all those around her. She is determined to prove that she can do anything. It seems that as soon as someone says that she can't...SHE DOES! We are so excited for the lessons that she is going to teach us all, how to persevere, how to achieve goals, how to conquer challenges and how to genuinely love and be happy. We are honoured to be her parents and wonder everyday how we got so lucky to be blessed with such a sweet little angel.
This picture below was taken right after she ate her very first full feed by breast and bottle. We are so proud!! She takes after her daddy...so classy.
This picture was taken after a very, VERY good breast feeding session. Normally she is not too happy when she is on that scale...clearly mommy won this battle. I'll take what I can get.
This is her first big girl outfit that has fit her so far. She's big enough now to not wear sleepers all the time...
