It's been 3 years since this little lover has has her heart exposed on an operating table, laying in a doctors hands. It's been 3 years since feeding her was such difficult work, even harder for her to gain any weight. It's been 3 years since we have had to watch her struggle for energy to eat or play.
The entire day almost passed us by actually, but a sweet friend reminded me just in the nick of time. It's kinda funny how these thing work out. Matt and I had been reflecting a lot over the weekend about how much Hazel has changed recently. It's like she's maturing and growing. The way she is in certain situations is so different than she was 6 months ago - 2 months ago even. We have been talking about how lucky we are that she is happy and healthy. We had a heart apt with the cardiologist where the report was raving and her heart is perfect.
Even though I did't realize at the time that her heart day was approaching, I feel like I did on some level. For some reason I couldn't bare to be away from her for too long (that's not the norm I assure you), but this last weekend - it was. I wanted to hug her, kiss her, play with her, hold her hand, sit with her. I couldn't motivate myself to do anything that wasn't with the girls. I enjoyed them - plain and simple - I was present. Something that really isn't always easy when you have a million things on your mind and a trillion chores to get done.
And with absolutely ZERO forethought of this day approaching, I happened to get this beautiful photo of me and my girl that so accurately portrays the event, the sentiment and strength I get from her. You can see her scar, and her growth. But this time I am holding her heart, because now it's mine and I'm not letting anyone else have it.
Thank you sweet Hazel for being the rock that you are. Your determination is admirable. I will never know another human who I respect more - EVER. You teach me to love better every single day. You carry me.
We just had a visit with Hazel's cardiologist and the verdict was better than we could have ever expected.
Her heart is perfect!!!!
Before her heart surgery it was a mess, and after it was slowly healing. She always had a few areas that the doc was watching to make sure no problems were developing. Nothing major, just keeping an eye on it (AND that's why I LOVE our cardiologist!) When we went in last week, he reported to us that those small issues had resolved themselves and that her heart was functioning all in the "NORMAL" range. Precisely where I want the numbers in reference to my baby's heart to be - NORMAL!!!!
No going back for 2 years and I'm pretty sure he just wants to keep seeing her because he loves her. AND I CAN TELL!!! He adores her. I adore him. I love the way he looks at Hazel first as a child, he looks at her as a whole. All 34lbs and 101cm of her (when your baby was once in failure to thrive you never tire of seeing her weight and height increase with every doctors visit. Oh Yes - of course we had to weigh Nola too - 27.9lbs and 88cms). He looks at her face and her smile, her tempermant and he can tell she's doing great. He asks questions like, "is she happy? What do you guys think, you know her best, any concerns?" We were blessed to have this man looking out for our girl.
And after was play time at the park with our warrior friends from the NICU (and a couple extras). The one great thing that came from the LOOOOOOONG stay in the NICU was these families. So fun to watch them all play and carry on in the park together. And by "play together" I mean all the kids running in ALL directions at ALL times ALL day. Except for when my kids napped, which was amazing. Mommy and daddy got to have coffee and visit.
What can I tell you?
We have been having a lot of mom-i'm-gonna-lose-my-s@#t moments around here. You know the ones where they pause for a second, look you straight in the eye, assess the situation, evaluate your emotional state and still go ahead and decide that grunting, growling, thrashing, and screaming is somehow the right choice? Yeah THAT!!!
Thankfully, we have also been having lots of those moments where you literally want to pinch yourself because you think you are dreaming. The girls are CONSTANTLY making us laugh, like always. Nola is really funny, like really. They copy everything the other one does and they both have taken to watching The Voice. It's not uncommon for us to have that show on very loud and the girls dancing and singing along. Evr'ry NIGHT!!!!
Anyway, I'm throwing this Friday back to a 7 month old baby Hazel that was just recovering from open heart surgery. If you are new here, feel free to read more about her VSD surgery here.
Fact for DSAM:
Lots of babies with Down syndrome are born with heart defects like VSD or AVSD (just to name a couple). Modern medicine has made it easier for these children to get the medical attention and repairs they need to fix these defects and let them lead healthy lives. Hazel was lucky to have had her VSD repair young. She's good as new!!!
Month 6 and 7 have been very eventful for our newest little. Here's what she's been up to.
I know this pic is blurry but, THE FACE!!!
1. Eats whole bananas, cucumbers, strawberries, pasta, blueberries like its her job
2. Got the Army crawl down to a science
3. Pulls herself up on everything
Nothing like having to do an emergency dropping of the crib mattress right before bed. Immediately after I snapped this pic, she fell and smashed her face on the crib railing :(
4. Goes from laying to sitting
4. Claps while saying "Yeaaaaahhhhhh" - I swear she is!
5. "Na Na Na Na" is her sound of protest
6. She growls always, like always.
7. She is SO loud, going out for dinner is completely out of the question
8. She is just starting to get comfy doing the four point crawling. Most of the time it ends in a bear walk of sorts.
9. She refuses to not be included in the festivities
10. Plays Peek-a-boo like it's her job.
11. Her life's current mission is to hunt and track Hazel's sippy cup. Must. Get. Sippy. Cup. Must. Drink. From. Sippy. Cup.
Watching Frozen like a big girl.
Daddy is moving up in the ranks with Nola. It's quite sweet.
She's teething, like hard core teething. She's got 2 bottom teeth, one top so far. And I'm pretty sure the next 3 at the top are going to be out shortly. She suffers, you guys. Just ask her.
Some of her "firsts" over the last couplel of months. Sprinkler, Swings, pool floaty, PASTA, and road trip.
I am really not sure how it took me so long to post this update from our last cardiologist apt.
Well...hang on...Easter happened, than baptism planning happened, baptism happened (with out of town guests), funeral happened, then a flu bug forced the girls and I to squat at Nonna's house for a couple days. Poor Matt.
Here we are...
All was well according to the heart doc. Hazel is doing even better than he had expected. We finally have visits only once a year. Most importantly, Hazel is always greeted with huge smiles and open arms when she gets her check ups. Love the docs so much!!!
It was really amazing to see a new little person in the office with us this time. It really makes you think how much can change in such a short time. I almost can't stand how much I love that they have each other, especially in a situation like this.
The ride home was filled with PURE JOY! And by pure joy I mean, good tunes, comfy car, good conversation and warm coffee. (5 minutes before this pic there certainly wasn't pure joy - lot's and lot's of crying - but as soon as that stopped the scene in this pic happened). Bliss!
While we are still adjusting to our new home life, new routines, and new roles I have this update from last month. I hope to get some pics of the girls up on the blog soon!
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Just a quick update on our last visit to London. It was in early October, but you know how things are - time is flying. Hazel had just turned 20 months. She weighed in at a whopping 26 lbs and 33 inches. It is almost unbelievable to think that at some point she was only 4 lbs.
She received another glowing report from the cardiologist and his staff. She is always putting on the smiles and blowing kisses to them just to make sure they eat out of her hand (like they weren't already). They adore her, and we adore them. We have come to know them all so well and respect how well they have taken care of our girl. She really likes the tech who does the ultrasound on her, all holding his fingers and whatnot. LOVE IT!
And of course we try to NEVER miss an opportunity to see our NICU fwends.
All of which are getting so big and active. We certainly weren't sitting on the blanket having a nice quiet picnic this time around. More like trying to maintain a zone defense and make sure to keep all our littles corralled on the playground.
Love these little trips so much...
Sadly we missed out on seeing our other 2 little fwends, Carter and Ella. Hope to see them soon!!!
Here we are again, going into another long weekend.
We are trying to soak up as much family time as we can before routines and schedules are a little harder to hide from. There is definitely some Baby #2 prep happening. She's gonna be here before we know it.
We decided to make Hazel a little girl room just for her. So we are going to start that VERY soon (no we haven't started yet....don't judge us).
In other health related news...
Hazel had her 18 month doctors apt and she's now 24 lbs 13 oz and 32.5 inches long. Every time I look at her in her crib these days, she doesn't look like a baby anymore. I feel like she fills the whole thing up.
WARNING: There is a rant coming your way. You might want to leave now while you still can (but I really hope you don't - sniffle) or grab a coffee and come back prepared to take a moment to read my plea about "milestones."
Oh good, I am so glad you stayed...here goes.
I don't know if you've noticed over the course of reading and following the blog that I am not really one for comparing other kids, worrying about when milestones will be reached at what time, or giving praise for how quickly some kids do things compared to others. I am not sure how many times I have been asked...
"Is she walking yet?"
I always just answer in the most honest way that I can and hope that it satisfies the person asking. I find it interesting how our culture and society is always worried and focused on that next step. We just don't spend enough time focusing on the present (which if y'all have been reading for a while, know how I feel about "being present"). Enjoying the phases our kids go through in that moment. Let me ask you this...
"What is the next milestone you are going to ask me about if I tell you she IS walking?"
What do you want to know about after the walking? I have no idea what is after this. Is it talking? Running? Reading? Drawing? I'm not sure.
What I can tell you about the way that I see things is that every child reaches milestones when they are ready. We can't force them to feel confident enough to take that first step, say their first word, turn the pages in a book or feed themselves with a spoon. All we can do as parents is be there to teach, support, challenge, be patient and give them a soft place to land when the first 50 attempts end in a little heap on the floor or a huge mess on the wall. Developmentally, as our children show interest in these things, we start to fill our tool boxes with the necessary items to help them achieve, progress and grow.
Even before Hazel came along and taught me about being present, I mean really forced me to live in the moment, I never placed much emphasis on what milestones kids were reaching when. I would always be there to celebrate their success but never wonder when they were going to do certain things. Of all my nieces and nephews, I couldn't tell you what age any of them were when they started to meet milestones and become the little people they are. I am just proud of them. All of them. For the things they can do and the things they are learning. I like the people they are becoming and to me that is all that matters in the end. I'm just glad to be a part of the journey.
In the last 18 months (cause Hazel is 18 months now...crazy!) I have met and become so close with so many other mamas who have babies with DS. I embrace every single milestone that their children reach. I am proud of them. I know what goes into being a mom of a child with special needs. I know how much effort and energy goes into OT, PT, and Speech. I KNOW some of what's in their tool boxes. I get it.
Are all our babes reaching milestones at the same time? Of course not. But we all take out our hammers, levels, and cordless drills and give it the best we got.
Mamas to typical children: Do your children reach milestones at the same time as their peers? Of course not. But you take your measuring tape, screw driver and chalk line and give it the best you got.
Children are individuals and that is what makes them ours. That is what makes them the people we love. Watching them overcome challenges and hurdles is what makes us beam with pride. To see something that was once so difficult become so easy, makes us proud.
In the end we are all the same. We all want what is best for our babies. We want to provide the foundation that they need to become stronger, successful, stable, productive members of society. It's just that the tool box we use is filled with different tools and tricks.
But it's ok...there's more than one way to build an empire (just ask the Romans).
Sometimes we share the tools of others because they make sense to us and sometimes we hoard our little boxes and stick with what we know works best for our kids. Either way, we have all spent the time slowly collecting the tools that are helping us do what we need to do.
Make our children happy.
So I guess I just took the really round-about way of telling you all that Hazel has started to walk.
She took her first steps at 16 months and has been practicing at her own pace ever since. She is still very wobbly and it ends in a heap on the floor a lot of the time, but she is proud of herself. She is confident and she gets back up and tries some more. To me this is a success. Looking at her determined little face makes me feel like my box has all of the right tools stashed away in it. I'm sure in the future I will take some away and add others, but for now I feel fully equipped to build my empire. My empire is Hazel's confidence. As long as she gets back up and tries again, I am proud.
She was not letting go of that stick for anything. Also, she was giggling and laughing the whole way walking down the sidewalk.
This weekend was a lot about waking-up-and-doing-what-felt-right-in-that-moment and a little about rushing-around-to-try-and-be-everywhere.
Especially, since Hazel came down with a stomach bug to start the weekend off with a bang. Her first one ever, so I guess I can't complain, but we certainly weren't laughing about this one (unlike the bronchiiiiiiiiiiitis). There was definitely not enough sleep to go around this weekend for any of us, but she is on the mend and is back to her active, loud, happy little self. However, now she is getting both of her eye teeth and one of her bottoms all at the same time. Needless to say she is a little irritable at times.
Looking back at the pics from this weekend, I feel like we still managed to enjoy small moments together as a family and get some visits in as well. Success!!!
We had a visit from Nonna, Nonno B and Zia Gina. Just try and tell Hazel she's not going to get her license one day. Good luck to that pour soul.
We made it to the Farmer's Market to grab some treats and then hang in the park.
We made it to the cottage for a visit with family.
(PS: We get to go here, to this place, anytime we want...Lucky much?)
We had time to get the all time BEST photo taken of the 4 girls.
Her cousins are always up for some Hazel lovin'.
My all time favourite moment. Let me just say the pregnancy hormones are at an all time high around here at the moment. Which means I am either breathing fire or on the verge of tears (or both at the exact same moment - Awesome!). Anyway, there were a few times this weekend that these 2 had me choking back tears. This was one. And the others, I get to store in my memory and keep to myself. I adore these 2. I adore how much they love each other more than anything else.
Nico. Just because in the 6.5 years that we have had her, her ears have almost NEVER both been up at the same time.
Lastly, this video is great. Jimmy Fallon, Robin Thicke and The Roots. Instead of listening to Big Parade we listened to and watched this. Amazing what can be done with a bunch of kids toys. Hazel was into it, dancing and carrying on.
We are so extra happy today on this Friday because it marks a year since Hazel's heart surgery.
It feels like a moment ago that we were all in Toronto waiting for the big event. If it weren't for the people in this entourage below (and many others), I think I may have jumped off the CN Tower.
It feels like a moment ago that we were so helpless. We could do nothing to change the fate for our girl. She had to take her troops to battle and we had to be there with our armour on.
We sang to her when she wanted to be sang to, we fed her when she wanted to eat, we rocked her and rocked her when she needed to be consoled. We tried our best to make it through with everyone all in one piece.
We kissed, hugged, and cried. And then we started again.
These days, if you look real close, you can still see the scar on her chest. It lays there as a reminder of her fight. It doesn't define her. It doesn't hinder her. It doesn't hold her back or prevent her from getting what she wants.
It frees her.
It's a sign of her strength, her will and her determination to make this "one and only wild and crazy life" the best that it can be. Not only for herself, but for us. Especially for us. She may be the one who bares the scars, but we are the ones who have been mended. We are the ones who are healed.
We have been super lucky with Hazel over the last year, sickness-wise. Yesterday was the first time that we have ever had to bring her to the clinic for a cold or virus.
She got a mild cough about a week ago that just seemed like it wasn't going away or getting any better. Hazel was in great spirits, sleeping well and just seemed like herself so we didn't worry. Anyway, we brought her in just to be sure and the doctor said she had bronchitis. No big deal, just some anti-biotic and she will be as good as new.
So, Why am I telling you this?
The reason is that this video that I have posted has completely and utterly made it impossible for me to hear the word "bronchitis" with out giggling out loud, just a bit. If you haven't seen Sweet Brown describe a small local fire at her neighbours house then you need to watch. Her accent, her description, her personality. I LOVE IT ALL!!! She is hilarious.
Let's just say, when Matt came out from talking to the doctor and he told me she had "Bronchiiiiiiiiiiiitis" in a Sweet Brown accent (after we chuckled), I was glad I wasn't the one who had to keep a straight face with the doctor.
I just want to say that I, in NO way think that a house fire is funny, or anyone who has to deal with bronchitis, or the fact that my daughter has it (I feel for her...really I do). I just really enjoy Sweet Brown's description is all. I hope you get a chuckle out of it as well (not that Hazel has bronchitis - or house fires - or anyone else who has it - but the video - ok - have I said too much?).
We had a visit to the cardiologist and pediatrician this week. It's been a busy one. 15 months already!!!
The cardiologist in London is extremely happy with Hazel. He is always very excited to see how big she is getting, how much she's changed and just how healthy and happy she looks. Hazel weights 23.5 lbs and is 31 inches long. She is getting so big!!! She spent the visit smiling, waving and blowing kisses to the whole staff, so I'm pretty sure by their laughter and smiles they were quite smitten as well.
We have been blessed with the doctors that Hazel has advocating and watching over her. Our cardiologist (and the staff) genuinely cares for Hazel and we can tell by the way he looks at her. That really is all a parent can ask for. The doctor to CARE about their child. It seems as though he treats her like she's his own, it's like he's protective over her. LOVE!!!
The last thing he said to us was that seeing Hazel made his day. Until next time...
Since Hazel started crawling our main focus for physio has been to encourage her to crawl as much as possible. We have not been working at all on bringing her to the next step which is walking (although she has her own ideas about standing independently and cruising). I am a huge fan of keeping her crawling for so many reasons.
1. She's easier to chase after while crawling
2. She is getting so much more coordinated by strengthening all her muscles by using them often and equally.
3. She is acquiring a keen body awareness for all her muscles. Even down to the pincer grasp. It is coming along nicely since she is constantly aware of her fingers because of the constant weight baring through her arms while crawling.
4. She is easier to chase while crawling (Oops...already said that)
Small Disclaimer: I just want to remind everyone again that these activities were given to Hazel, for Hazel, by her OT and PT. If you would like to try any of these at home with your babes, please ask someone in your local community for support and advice on what will work best for your children.
Another Small Disclaimer: My intention for these posts is to provide ideas and information about OT, PT and Speech for anybody who feels compelled to learn or is interested in what it looks like in our home. It is NEVER to compare Hazel to other children. My favourite thing about kids is that they are all different and do things when they are ready and in their own time.
Also, we have stopped doing some of these activities and still continue to do others. Since she has started standing and cruising on her own we have added some new activities that I will include in the next PT/OT post.
The activities this time around speak for themselves...
1. High Kneel on Couch
2. Pull to Stand & Cruising
We use anything that is the right height for her to pull up on. Actually she is good at scanning a room and trying her darnedest to pull herself on everything in it. (Who says "darnedest"?)
3. Bench Sitting
We have the toys within reach on either side of her so she has to turn and reach/lean down to grab the toy and bring it up to center.
4. Crawling...crawling...crawling
1. Self feeding with a spoon and fork
She does great with this as long as I load it for her. She is pretty proud of her self, actually!!!
2. IN & OUT
We practice with anything and everything. PRAISE!!!! Girlfriend can put things IN & OUT!!!
Here is a pic of the toy that really drove the concept home for her. She is obsessed!!!
3. Lots of listening to music while we play
Listening to music facilitates movement and also allows me an opportunity to add actions and signs that she is starting to learn slowly.
4. Working on early feeding signs
We are working on "more", "eat", and "drink." She has mastered "all done" and knows when to use it. The other are more difficult because she won't let me use her hands to show her how to do it. She just gets mad and pulls them away. (Same with loading her own spoon, won't let me guide her hand)
5. Pincer grasp
Like I said crawling has helped her a great deal with this. I just try to give her small pieces of food and try to encourage her to use her fingers to grab it. We are laid back about it but it is coming along. We are going to start using 1 inch cubes and smaller toys for her to try and manipulate them with her fingers.
Well March just flew by, just like January and February. Crazy!!!
Hazel has been hard at work, doin' her thang, bein' a baby. She is rarely sitting these days (or rarely sitting still). We officially have the baby gate up now. She may or may not have been sitting at the gate, hands on the rungs, looking through at me, shaking it violently. Y'all know how it is??? (If you follow our IG feed you already know what I am sayin')
Biggest news for Hazel this month:
SHE FINALLY GOT A TOOTH!!!!!
Lots of this happening...always.
Hazel spent time with Nana. They shared stories and smiles. They laughed and played. So cute!!!
We had a very special visit with Hazel's very first fwends.
The twins that joined Hazel in the same pod in the NICU came for a sleep-over. As we all sat at dinner eating, drinking, talking, and laughing (where there were 3 highchairs all at one table). Holly and I had that mother-to-mother look on our faces that just begged the obvious to be said.
"Look how far we have all come!" "Look how much has changed!"
We sat there talking about what our girls are eating, how much they sleep, how much milk they drink and what they like to play with. While, a little over a year ago, we were racing against the unforgiving "pumping" clock, talking about what nurses were in that day, how many milliliters our girls got tube fed, how tired we were and how many more days until we could all take our babies home.
1 short (quick) year has brought with it an immeasurable amount of wonderful change!
And last but not least...
Happy 10th Birthday Stella.
Can't believe you have been around for 10 years already!!! You are growing way to quickly and taking your sisters with you. Please leave Hazel as she is. She's not allowed to be 10. We are very strict in this house.
We love you!!!
(PS...I love you even more that you had an ice cream cake)
K...so it's still snowing on March 25th. I think this year is one of the worst we've had in a while, weather-wise. BUT, I guess we aren't having tsunamis, hurricanes, earthquakes etc. (why does this really not make me feel better - #firstworldproblems)
One of the highlights over the last couple of weeks for sure was that the sun was out for long enough to cast a shadow for Hazel to find. And find indeed...
She has been searching tirelessly for her shadow these days, when she finds it they get reacquainted. The arms go up, the fingers start to wiggle, the body bouncing up and down.
This post is a medley of old and new(ish) Physical Therapy (PT) and Occupational Therapy (OT). I am working on a new post of activities from 12 months and up.
YIKES!!! Time fly's...Hazel grows and then we start new activities.
Hazel started to do these activities when she was 9 months. She is still working on some and has mastered others. As with all of my PT and OT posts, these activities have been approved by Hazel's therapists for Hazel, please check with a therapist in your local community before trying any of these activities with your children.
Occupational Therapy
1. In & Out
Hazel is working on putting objects in a bowl and taking them out. We use any big bowl available. I think maybe a metal one would be better so that when she drops something in, it makes a louder noise. Sometimes when I am feeling brave, we use a huge metal pot (side note: holy it's loud!!!) Any little toys work to drop in, links, cubes, pegs, balls. Hazel often has a hard time hearing anything drop in because she is constantly talking and babbling while playing. What is that saying - "you can't talk and listen simultaneously" - wait...did I just make that up? Oh, either way, you know....
She takes toys out of her bin, not so much put them back in. That's my job. I think she just wants to make sure my position as maid is secure. She's so kind and thoughtful.
2. Drinking/Eating
We are always working on eating and drinking. Hazel practices drinking out of a cup and a sippy-cup everyday. We try to encourage self-feeding by giving her pieces that she can pick up herself and put into her mouth. Her pincer grasp is not finessed enough for her to pick up really little objects like Cheerios, but she does well with penne noodles, crackers, bread and bananas (to name a few). Poor girl still has no teeth, so taking bites is difficult. When she gets the pieces into her mouth, she can't bite a piece off. Frustrating!
3. Rings
Put them on. Take them off. Put them on. Take them off. Put them on...
So that's that one.
Oops...that's cheating! You can't just dump them all, Hazel!!!
Oh yes...bang them together is another game she likes to play.
Physical Therapy
(these activities are not all we do, just some)
1. Weight Bearing on Arms
This one is a precursor to crawling. Here is one of the positions that works for getting her ready to push herself up in a 4 point. It is also encouraging her to weight bare on her arms. We try to get her to go from one side to the other. I find it easier if you hold a toy out for her to see, however, it feels like I need another hand to support her and hold the toy. You have to find what works for you.
When I move the toy in front of her, she follows along with it and sits looking forward and then I drag it to the other side and she leans to reach it. It's a tricky one!!! This was also great for getting her comfortable with putting herself in the sitting position. She would push herself back into a sit.
She would often shift her weight and would be in a 4 point stance for a couple of seconds, which was great to get her used to the crawling position.
2. High Kneel
This was my favourite PT activity (now she does it all the time on her own while she's playing)
It is easy and efficient for mommies and very effective in teaching backing in to a sit. It is also perfect for strengthening her arms by encouraging her to weight bare on them for a extended periods (by this I mean about a minute...maybe more if she was really into the toy that day). When backing into a sit she just pushes off the toy with her arms, leans to the side and goes down.
I would often switch up the tools we used to get her into a high kneel. Here she is leaning on a pillow or nursing pillow that is on top of the foam piece we have. Works perfect. Sometimes I would put her mirror in front of her so that she would stay there and talk to herself for a while.
At some point, she started going into this position and rocking. Crawl prep...
3. Crawling
Turns out this is the best PT there is. So, we just encourage her in which ever way motivates her that day to crawl around the house. Under the advisement of her therapist, we are not working on walking with Hazel. She is gaining so much strength in her arms, legs and core by crawling that we are just content to keep her doing that.
Speech Therapy
1. READ! READ! READ!
Lots and lots of reading. The same books over and over. We make sounds of animals, we point to the text. We start again...
Girlfriend is obsessed with books. She will sit forever with me and read. I LOVE IT!!!
Sometimes, she can't decide, speech or OT??? Decisions...
We have since added a bunch of new activities to our daily routine. I will share in a later post. Hope this helps to give some ideas!
When the geneticist sits down and tells you your baby has Down Syndrome, many thoughts go through your mind. Lots of things are said. Doctors and nurses tell you about the "challenges" that may lie ahead.
One of the thoughts, is that your baby will be different from all the other babies. Immediately you think, "woah, 'different' - that can't be good - doesn't sound good."
We all want our babies to be different, unique in a way, but when push comes to shove, not really. We don't want them to be that different. We want them to be the same, and do all the things that every baby does.
Any one of you moms out there that has been on Baby Center - EVER - FOR ANYTHING - knows what I mean. It's fine...no judgements!!! Chasing Hazel is a judge free zone...really...I have no room to judge - TRUST ME!! I digress...
So, I was saying...you find out your kid has Down Syndrome. For a minute (k...so way longer than a minute really) you feel like life as you knew it is over. Long story short (for now), you try to figure out what does it mean for your baby? Will they do all the things other babies do? It's scary and daunting and scary.
Here is the silver lining...
Hazel and all other babies like Hazel, will do all the things other babies do. They might work a lot harder to get there, but one day it just happens, they are there. We are blessed to be a part of their journey.
And mama pride!!! Well proud does not even begin to break the barrier of emotions you feel that your baby is different, but also very much the same.
This is only Part 1 of a 3 part post about our visit to London last week (I will get the other 2 up soon).
We had a very busy couple of days and I can't wait to share the festivities with you all. For today I will cut to the chase and give you an update on Hazel's health London Style!!!
The doctor walked in the room, yet again, and stopped dead in his tracks to clap his hands together and praise how amazing Hazel looked. His smile is always one of awe as he looks back and forth between Matt, Hazel and I. I can tell you it is contagious. We all are just standing there, staring and smiling, at how healthy and happy Hazel is.
Drum roll please........she weights 19 lbs 8 oz and is 28 inches long. She is completely off the charts for weight now, like completely off!!! So, I expressed a tiny bit of concern that maybe she was putting on too much weight now. Let's just say that if the doctor could have laughed in my face, he would have. She is growing perfectly. He could not be more impressed.
Hazel's doing amazing!!! We don't have to go back for 6 months. We stopped in to see Auntie Cheryl (one of her NICU nurses) and she could not get over how big Hazel is now. She did offer to take her home. So we got it in writing for the next time Matt and I want to go on vacation...I kid. We will miss not seeing the nurses for the next 6 months but look forward to reveling in Hazel's growth the next time we see them.
Liberace made an appearance in the waiting room.
Crowds swooned, women were throwing roses and phone numbers...it was a bit embarrassing but we got through it. Halloween was in October Hazel!!!
We put Hazel in her Play-yard this weekend and here is what she decided to do. This video was taped, literally, minutes after she went in for the first time. Hilarious!!!
Click here if you are having trouble viewing the video.
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!!!
Chasing Hazel
Welcome
Hi!!! (I wish I could use the 'wave' emoticon right here) So very kind of you to stop by and meet our little family. Prepare yourself to read about the daily shenanigans of living and loving life with Down syndrome. Oh - I should warn you - sometimes there's this neurotic women who takes control of this space and rants about the 2 tiny humans (ahem…terrorists) that are in current reign of the household. Join the chase!
First day of summer views 👌🏼 Happy Friday everyone! Anyone have any plans?
First day of school 🙌🏼🙌🏼 Swipe •
Last day of sch.... ahhhh forget it 🎧📱 #hazelandnola #weout✌🏼
What. Is. Happening.
#ItsonlyTuesdaydude #nolathinksshescool
Literally the most present, involved, caring, funny, silly, comforting, supportive, patient, loving, tender, empathetic father there ever was. The girls lean on him for everything. There are certain things he can do for them that no one else can, not even me. The relationship they have so is incredibly strong. I know they are going to be more evolved human beings because of, and with his influence. He reminds us all that there is good in the world. He sees it. He lives it. He shares it. Happy Father’s Day @seegs34
They say, “there’s a season for everything” that “you can’t always get what you want” 🤷🏼♀️ But I say, forget that (and if you know me, replace that f word for another one), and buy a truck. Then you can always get what you want and it’s always truck season 💪🏼🤘🏼 For reals though... I’m so grateful for this life, the sacrifices we’ve made, and the work ethic we have in order to have nice things. Because actually in fact you just can’t always have what you want, you have to work your ass off first. My new wheels guys. LOOK AT MY NEW WHEELS!!! 😱
It’s a crazy season we are in right now. Not seeing these 5 together has been one of the toughest things. Yesterday was a good day ✨✨✨ #seguincousins
Crazy fun All Together Fitness comp today. And by fun I mean fun up until the 400m bear crawl (pictured here). This was the last of 4 events today. I literally almost died. At one point I asked for a panini cause I thought it would make me feel better. I also asked for someone to dangle Netflix in front of me so I could just be distracted. The only reason I didn’t quit was because my kids were watching. We all started at the line together and they all met me at the line when I fell over it 😂 My very first fitness comp to date. Gotta say, I’m still standing 😂😂 Loved hanging on zoom with so many today and being a part of such a cool thing even though we are all still apart. Missed the All Level Crew today so much but so thankful for all the work they put into this event. Get after it folks! @alllevelfit #seegstimesfour
14 years ago today I literally almost jumped into his arms by the time I met him at the alter. Been together for 22 years total. It’s incredible how much we have shared together over the 22 years. After our wedding 14 years ago, the number one comment about that day was how big my smile was the entire day. So many people said it. My face hurt from smiling.
So much time has passed. My face has hurt from smiling many days since then. It’s also hurt from crying. And fighting. And being exhausted. Life has thrown us so much, so many gifts (even the ones that didn’t feel like gifts at the time), and we are still standing. Sometimes we just have to make sure the other is close so we can lean in.
✌🏽✌🏾✌🏿My heart has been heavy. My head has been spinning. I have been reading and listening. And reading and listening. I can’t even begin to think I have even scraped the surface of the nuances of complex systemic issues that have been so ingrained in us we don’t even realize it. Racism - still alive and well in 2020 and thriving on fear. I will participate in BlackOutTuesday for BlackLivesMatter. I am of the opinion that I shouldn’t have to say “Black” lives matter because it’s redundant. Of course they do. •
Here are some accounts I’ve been following or recently started following. Give them a follow. Head over and start reading. I am realizing there is a great deal that we do not know, and we can’t know what we don’t know. •
@theconsciouskid
@rachel.cargle
@austinchanning
Hazel has been doing great! She never complains she’s in any pain. She wants to play and dance. She’s kind of a grouchy Gus on her best day so I think she’s a little more grouchy than normal 🤷🏼♀️😂 Her and Nola are always laughing about something. So far so good! #hazelandnola
She’s home!! 👏🏼 She super super cranky and tired, poor little thing. Thank you so so soooooo much to all of you who took the time to comment, like, text, call.... it really means so much to us to know how much this little lady is loved. I was totally overwhelmed with emotion reading all your kind words here and on Facebook 👌🏼😭❤️
This little nugget is having some work done today to fix her obstructive sleep apnea. The hospital is 2 hours from us. Only one parent is allowed to be with her (thanks Covid). Matt is the parent she prefers so he’s there with her. I’m just trying to keep it together. I may or may not have cooked all afternoon yesterday to ensure they have all the meals they need. He probably brought a HUGE cooler full of food 🤷🏼♀️ Being so far from them is super super hard but I get it. Last report was that Hazel was in good spirits, watching Frozen on her iPad as they wheeled her in. Usually Matt goes in with her until she fast asleep but again thanks to Covid, he wasn’t able to today 😩 We appreciate all your thoughts, prayers, and positive vibes. She’s a strong girl, I just wish she didn’t have to keep proving it 😭 #hazelismyhero
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There are still socks in the shop!!! Don’t forget to grab them while they are still available!
Link below to shop… https://t.co/TjY8Plghzs
This Social Communication Group is an ongoing resource TCHF offers to all ages 2 & up. Hazel is in this session (ag… https://t.co/gl04Wlnms7
