Hot-lanta family vacay

Last week the fam jam took a long overdue vacation. Well it wasn’t a true family vacation, the hubs had some training in Atlanta so we tagged along. The girls and I had a few days on our own and then we had a couple of days with daddy tagging along.  I don’t think that Atlanta was ever on a bucket list, but I am so glad we went.  There were some great activities to do with the kids and sights to see.  And the food was to die for.   We had such a good time.  Here is a photo explosion of our adventures.

This was Izzy’s first flight and she did great! Well she cried a bit but who wouldn’t in these squishy planes? Addison was very much into safety.
On the first day, we had some waffles at the famous Waffle House, took a nice walk and met a deer at McDanial Farm Park and had some serious delicious seafood at the Juicy Crab
The girls and I went to the Southeastern Railway Museum the next day.  It was “2nd Thursday” tot program so we got to make some crafts, have story time, ride a train and meet a nice policeman.  Afterwards daddy took us to the mall for some shopping and ice cream.

A great day was spent at the Georgia Aquarium.  It was awesome to see the girls in such awe.  No trip to ATL is complete without Fried chicken and okra.  We ended the day in downtown Duluth for a splash in their fountain to cool off.

Whoever knew there was such a huge Korean community in Atlanta? A mommy friend on an online community I’m part of recommended Wu Nam Jeong Stone Bowl Restaurant and it did not disappoint.  So tasty! Across from our hotel was Nam Dae Mun – this amazing grocery store with all sorts of Chinese, Korean and Latin products and produce.  Put T&T to shame.  I wish I lived near one.
We spent a day at the Atlanta Children’s Museum and The World of Coca Cola.  The kids had so much fun!  It was also the 20th anniversary of the Antlanta Olympics so they had a big party in Centennial Park.  
Before we we left we visited Stone Mountain Park.  What fun we had riding the “sky train” to the top of the mountain (as Addison calls it) and then the “ground train” around the mountain. Addison also loved the 4D show of Yogi Bear.  

I am happy we took this opportunity to get away as a family. This was our first trip away as a family since Addison’s 2nd birthday to Disney.  With the year we had it was a great way to just be in each other’s company and really take stock of how far we have come.  Travelling with two kids is hard, and the girls were often just too hot to enjoy themselves but we made it work.  We took lots of naps and spent a lot of the hottest hours of the day indoors.  And as hard as it was, it was worth it and we all had a wonderful time. Thank you Atlanta for being so full of happy helpful people and for showing us the southern hospitality you are so famous for.  You weren’t on my bucket list but I am sure glad we visited. 

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Meet A. LeBoo

Listen to his story here
Meet A. LeBoo.  His name comes from watching the Montreal Canadiens (but he’s not a fan, he’s a Leafs fan) and the broadcasters yell “eh! Le beau!” after each goal.  He comes from a rodeo clown family but he was too scared to follow in the family business.  So he went to Toronto Sick Kids to play and to learn from the kids at the hospital all about bravery.  

This story about the gentle therapy clown at the Toronto Sick Kids Hospital came over the radio while I was driving and I teared up emotionally.  What he does is so simple, just spending time playing with the kids and letting them lead in whatever form of companionship they need.  Yet it takes a very special person with a very big heart to be in this line of work.  There is nothing that touches me more than listening to the stories of people dedicating their lives to the welfare of children who spend their time at children’s hospitals.  I am a strong believer that health care should be looked at wholeisticly, and I don’t think this can be more true for kids who are at the hospital for long stretches.  There are many nights when we were leaving the hospital that we saw the pajama parties and all the workers at Alberta’s Children’s hospital dressed as fairies, princesses and superheroes and I am sure these efforts lifted the spirits of all the children and make their stay just that little bit more bare able.

So here’s to all the clowns, all the princesses and super heroes, who makes everyday A little bit of sunshine into all these brave little children’s lives.

Surgery go time


So we got Izzy’s surgery date yesterday.  August 10.  The surgeon that did our consult and saw us at the emerg a while back plus the plastic surgeon will be doing the surgery.  They mentioned that they are not getting significant improvement with the growth of her body in relation to the omphalocele so waiting longer will not bring much more benefit. The surgeon mentioned that from feeling around her rib cage, she thinks we way need some goretex in there because there is very little tissue.  The best case scenario will be that she doesn’t need to use the goretex but it is not terrible even if they do.  If goretex is used, it will stay in for a few years and be reassessed when Isabelle is older. There is a higher risk of infection if there is a foreign object in her body, and that is the biggest risk.  The only added concern would be if the goretex separated in the future and an internal organ snuck it’s way out a bit.  There would be a risk of blood loss to that piece of organ so That would mean a follow up emergency surgery.  

Her barium test by the way showed that her upper GI looked normal.  Her lower GI is all spaghetti like of course but also functioning normally.  

The big goal for the girls is to keep both of them healthy so that Izzy is strong and illness free before surgery.  To keep the girls healthy we have already planned for my dad to come two weeks before surgery day so that both girls can stay home from daycare. We are lucky we have an option like that!  For me, it will just be managing the anxiety.  We have a few trips planned this summer which will be a good way to get through the couple of months before surgery.  It will be awesome to spend some time with the girls outside our regular routine, and it will be a good distraction to help control my anxiety.  I do believe Izzy will do great through this – she is pretty fiesty.  Me, I am not so sure.  I am excited we are finally at this point but also nervous and anxious what might go wrong.  Oh well, nothing some wine won’t cure! 

Mom torture 

So here I am waiting for the next round of x-rays as part of Izzy’s Upper GI and lower GI follow through study.  This study can take up to 4 hours.  Izzy hasn’t eaten since 10 last night.  Oh and she’s teething.  Mercifully she’s passed out and is taking a snooze.  

So here is an update – Izzy is still under weight. Nothing alarming yet but after a rallying increase she started having bouts of vommiting that comes and goes.  To try to increase her weight Izzy gets to have as many milkshakes and protein shakes as she wants.  Also, body builder cookies.  Yes that’s what they are called.  


Furthermore, we have been trying different things over the last month to stop her from throwing up everything she eats.  First we thought it was car seat related because she threw up every morning the moment we strapped her in the car seat.  (Note to car seat manufacturers: what the actual fuck.  Why are car seats the world’s most pain in the ass things to clean?! ) We stopped using her little shell because most likely she had grown out of it. That seemed to work for … A week.  Then we thought maybe it’s cuz she is sick and we took her to the doctor and they gave her anti biotics for her cough.  The doc thought maybe it is a post nasal drip that is running into the back of her throat and causing her to throw up.  By this point she has had regular throw ups on and off for about a month, and she had lost 1 lb.  normally 1 lb is whatever, could be measurement error.  But for a baby that is already underweight, this was a cause for concern.  So we were told to put her on pediasure and also make her more high calorie foods.  But the round of antibiotics has not made her stop vomitting.  At the last visit to the dietician, she suggested may Izzy just caught 3 separate bouts of gastro.  But the pediatrician isn’t so sure.  He thinks maybe we need to up our omeprazole dosage because the vommiting is mostly in the morning.  He also suggested we do an upper GI and lower follow through study to see if they can figure out what is going on with her system.  And so here we are.

She knows what’s coming

The study is basically mom torture.  First, they aren’t allowed to eat for 6 hours before the study.  When you get there, they strap baby to a board and make them drink a barium drink while they snap X-rays.  As the mom you are basically helping the x-Ray techs manipulate your baby while she screams bloody murder.  “Hey mom can you help us do the exact thing your baby doesn’t want you to do?” “You hold her down while I force this liquid down her throat”.  After the initial pictures, they get you to wait for half an hour and then strap her back onto the board to snap an x-Ray to see how far the barium has travelled.  And then they repeat this every so often until the barium has travelled through to her butt.  The barium helps highlight the internal GI structures so the first shots while she is drinking the solution will show how her esophagus works and to highlight her stomach.  The second part goes through the small and large intestines. Understandably, Izzy hated this.  Don’t worry she let us know.  This was done in the radiology department at the children’s hospital.  Everyone that works there are amazing.  Every child that goes through there needs an x-Ray, an MRI, a barium test.  The babies have to be strapped to boards or put into tubes.  While there all I heard were crying babies.  My nerves were shot just by my one little baby and yet here these people are day in and day out.  So amazing and strong.

I was really not looking forward to this appointment.  Isabelle has been teething and generally miserable.  She also is hangrey in the morning.  This weekend has been pretty trying with the girls, both just in general bad moods.  The thought of a 6 hour appointment where there is basically a guarantee that Isabelle would be in a bad mood just exhausted me before we even got there. I was trying to think of a way to send the hubster instead of going myself.  But during the appointment, my heart broke.  Every cry was an accusation that I was putting her in this situation, every look a plea for comfort.  I felt so guilty I even once thought that this would be annoying instead of just rising to the challenge of being there for my baby.  I go back and forth with these feelings.  One minute I can’t wait to go to work because I can’t spend another day listening to the kids cry, and the next I feel like I’ve let them down because I am never there. 

I think this the real mom torture, the torture we put ourselves through.  The guilt of not being enough.  The guilt of not loving enough.  The guilt when we feel run down by the regular struggle of being a parent.  But why do we feel this way? We are humans with human feelings and doing our best, yet we still try to be super human and become disappointed in ourselves when we prove again we are just human.  I don’t think that this is necessarily a mom thing but I do think that being a mom makes the feelings more acute and that it feels like there is so much to lose.  But if we don’t treat ourselves gently, who else will?  I’m not saying that from now on I won’t torture myself anymore (obviously not because how many “treat ourselves gently” posts have I written?), I am not that niave to believe that.  But dammit, today was hard.  And it was ok that it was hard, and yet I am doing it.  I AM super human.  We all are. Lots of love to you all. ❤️

 

One one one! 

 This little munchkin turned 1 today! 

   We threw her a woodland themed party complete with mushroom cookies, toad stool cupcakes and a cheesy hedgehog.  All of Izzy’s friends spoiled her rotten.  She ate an entire grill cheese sandwich and probably 3 mini cupcakes.  

 We are so grateful to all the love showered on our little one on her special day from our friends.  It was great to catch up and see all the littles grow bigger and become good friends.

  This little baby has changed our lives.  We spent more time than we wanted in the hospital – a place we have grown to love and a place that represents hopeful futures and resilience.  We have learned to embrace a different normal that I would have never imagined for our family, or for my children.  We have learned how to be patient and to look for the opportunities in even the most difficult situations.  I have experienced more anxiety and exhaustion  in the last year than ever before.  It was hard.  But seeing how far we have come and this little baby thriving makes all the sleepless nights worthwhile.  

This upcoming year will be another one full of milestones.  Isabelle will start daycare next week.  She will learn to walk, learn to talk.  She may have her surgery this year.  Whatever the next year and all the rest of our years bring, one thing is for sure.  Our lives will never be the same now that this one has come.  It has grown richer.  Our family has grown stronger and more confident.  I can’t wait to see what is in store for us.

—–

 Before she turned one, we had a big scare.  Isabelle has been pretty sick over the past week with a cold.  Nothing too exciting, just some coughing and stuffy nose.  Throwing up once in a while. But on Wednesday when we were getting her ready for her bath I noticed that her omph had doubled in size.  It totally freaked me out.  Is this what a blockage looks like? We called the on call surgeon and was asked to go into the ER at the Children’s just to make sure nothing was wrong.  Turns out that when Izzy coughs forcefully, she can push all her guts back into her omph.  Also, when she is sick, upset, coughing lots or crying lots, she can also swallow more air and cause her to be bloated. With no muscle to hold her guts in, everything just gets pushed out.  Basically the omph is likes balloon. Nothing to be alarmed about.  Now if her omph blows up like a balloon, I won’t lose my cool and freak out. 

We learn something new everyday. We grow in confidence everyday.  I wonder what we will learn this year.

Thank you Radiothon! Thank you Calgary!

  Read Izzy’s radiothon story here! 

Update: the numbers are in, the 13th annual radiothon raised 1.65 million dollars for Alberta Children’s Hospital!  Thank you Calgary!  In such hard times it is heartening to be part of such an amazing achievement.  

I write this as I feed my little munchkin and the radiothon wraps up.  Radiothon is always such a special time of the year and we are so grateful for being able to participate this year and tell the City of Calgary all about our little girl.  Listening to all the stories made me reflect what a journey we have gone through and how much the hospital actually has done for us.  I also realize in the short amount of time we had there was no way I could have ever shared all the amazing people and stories with everyone.  

I didn’t get a chance to talk about all the time we had spent going to the children’s before Isabelle was even born from meeting with genetics, peeking our head down the NICU hallway, meeting the surgical clinic and going to get MRIs in their tiny kid size machine.

I didn’t get a chance to tell how the two moms in the waiting room chatting casually with their two chronically ill teenage girls gave me hope that no matter what we would get through this with Isabelle.

We didn’t bring up all the details of Isabelle’s condition including her ASDs.  Nor did we bring up the day to day struggles, joys and laughter we shared with NICU staff.

There were not enough thank yous to all the people in the hospital that touched our lives.

And so much more…

But, how can 5 minutes ever cover the journey that we have taken over the past year and a half?  Isabelle turned 11 months today, and I am not sure that a year and a half ago I dared to dream that we would have a healthy baby home with us, let alone a happy, chatty, smart little who can do anything any other 11 month can do.  How can you ever express the roller coaster ride we have been on in 5 minutes? I just hope the bit I did share brings more awareness to omphaloceles and also to the great work the hospital has done.

It really has been so amazing to get this opportunity reflect and share with others our journey thus far.  I think I needed to, to remember what an incredible journey this truly had been.  Sometimes we are desensitized to how hard it really is because you do what you need to do for your kids and family, so it’s important to look back and remember and give back to all of those who have carried you.  Thanks all who are part of this journey, for reading and for listening. ❤️

Radiothon!!

Click here to donate!  

A donation to the hospital is the best gift you can give me!

Tomorrow morning at 7am we will be on Country 105 telling our story in support of the Alberta Children’s Hospital foundation.  This charity, of course, is near and dear to our hearts.  I’ve said it before, we owe the hospital a lot.  The hospital has been a huge part of our village over the first year of Isabelle’s life.  Without such a state of the art NICU our month stay would have been much worse.  Without the amazing staff of doctors, nurses, lactation specialists and occupational therapists, we would not have made it through with enough confidence to take care of her at home.  Each visit we had strangely felt like seeing friends even though we were discussing serious issues such as her omphalocele, her weight gain, the ASDs she has in her heart.

Probably from my blog you guys already know that I love to talk.  I also love to share Isabelle’s story to raise awareness for Omphaloceles and the Children’s hospital here in Calgary.  I am grateful for this chance to get to share our story and I hope you all show your support by tuning in and donating.  The link above takes you to the radio’s webpage where you can listen live! 

Thanks again for being on this journey with us. Lots of love! 

Our baby's journey