Friday, February 26, 2010

We have a date

And no, unfortunately it's not the romantic kind of date for Don and I!! We got the call yesterday that Nate's pulmonary artery banding surgery has been scheduled. We leave in 10 days. We'll have an appt. with his cardiologist on Monday, March 8th in Winnipeg, and fly to Edmonton later that day. Tuesday, March 9th will be a full day of appointments in the Pre Admission Clinic (including a very NOT fun sedated ultrasound). Wednesday is surgery day.

Although we've been waiting to get this call and the dates for surgery for a couple of months, somehow it was still a shock to actually get the call with real dates. Probably a good thing that we only have 10 days to prepare for it!

If you haven't already, take a minute to read the post from yesterday. Nikki's words are so bang on!

Thursday, February 25, 2010

A 'Borrowed' Post - From Broken Little Hearts

The blog world is such a great place! I met another Heart Mom, Nikki, today. Her blog Perfect Broken Hearts chronicles her daughter, Abby's, journey. Nikki is an advocate for Congenital Heart Defect Awareness. I look forward to learning more from her and following their experiences.

This is a post from her blog - she talked about "Things I Wish I Had Known". Her words are not only an encouragement to me, but also a lot of feelings that I've had, but haven't been able to put into words so eloquently. Even though our journeys are very different, the heart of the matter is the same. I think you - my friends and family - can benefit from this as much as I have.

I share her words with you, with her permission:

1. I wish I had known that no one else will fight for my child as well as I can. When it comes to her health and wellness, her hospital stays and her emotional needs, I know her best. Doctors, nurses, interns, surgeons…all these people are vital in her care but, I know her best. It is okay to question a doctor or surgeon. It is okay to seek a second opinion if I feel I need one. I do not have to sit by and allow them to dictate her care to me. It is easy to be so overwhelmed that you just wait and listen numbly, nodding and trusting so completely that they can save your child that you will do anything…if that feeling arises in the pit of your stomach, telling you that something isn’t right or something different should be done….listen. The relationship with the cardiologist, surgeons, and pediatrician need to be one of trust and communication. I went through three pediatricians before I finally found one I trust completely and can ask, any time of day or night, about anything.

2. Life is too short to lose even a second with a heart child to mourning. Those who are diagnosed in-utero have a time for mourning and coming to grips with a CHD. Those who learn of their babies defect after delivery have to mourn at the same time as becoming a new parent. The mourning often overshadows the joy. We found out at three days of our daughter’s heart condition. I cried for days. I walked around numb and fearful and angry and confused…so many emotions to deal with. She slept between my husband and I because I was so scared she might stop breathing in her sleep. After she would fall asleep I would weep, as quietly as possible. One night, my crying woke my sweet husband. He asked what was wrong. I was shocked! How could he ask what was wrong? I sobbed out, “I don’t want her to die.” He looked at me and said, “We don’t know what tomorrow will bring. We have her with us now though. Shouldn’t we be happy for the time she is with us?” I was stunned….he was so right. What if she was only her a short time and I wasted that time mourning, instead of soaking up every last ounce of joy and love she brought with her. I still had to work through the emotions of mourning, but I no longer let it consume my every thought. Instead, I focused on every moment I had with her in my life.

3. Children with CHD will ALWAYS live with CHD. My daughter had a very rough open-heart surgery to fix her Tetralogy. Nothing ran very smoothly and she was put on the bypass machine three separate times. We were “prepared” by the hospital staff for the worst while hoping for the best. We were blessed with a positive outcome. Abby has been told her surgery story time and time again. How rough it was, how she almost didn’t make it out of surgery, how the surgeon told us it was hard, how they prepared us for her to come out with brain damage….all the amazing terrible circumstances she overcame. Abby is now facing her second open-heart surgery. She is ten-years-old and imagine what all those stories have done for her confidence in this upcoming surgery. She is fearful…fearful of possibly dying, fearful of suffering brain damage, fearful of the doctors not being able to fix the problem…she is scared and part of her fear is my fault. Her story is amazing and she is a miracle. I told her her heart story because it is so amazing, however; I wish I had the foresight to see how it would effect later surgeries. My telling would have been gentler, filled with a focus on the progress and miracle of it instead of on the terrible circumstances she had to overcome.

4. Others don’t understand, and many never will. Abby looks perfectly healthy. She is smart and outgoing and likes all the same things other kids like. She doesn’t look fragile by any means. The constant worry and fear can’t be fathomed by others. Finding out Abby has been exposed to strep throat or the flu knowingly makes me CRAZY!!!! I want to yell…WHY? WHY WOULD YOU DO THAT? Then I must remember…she looks healthy. They couldn’t possibly fathom what strep throat, the flu, second hand smoke, bad air quality…and so many other threats and germs could do to her. All I can do is remind and ask politely and hope they will respect since they can’t understand.

5. The heart defect does not need to limit my child. Having a child with CHD does mean as a parent I need to be extra vigilant and diligent. What having a child with CHD doesn’t mean is that I need to make her and everyone around remember that she is disabled or fragile. I know how special Abby is in so many ways, but my relationship with her will never be like anyone else’s. So, instead of focusing on her CHD with others, I let Abby forge her own relationships her own way. I inform those who need to know of her condition, like school teachers and others who see her, but I inform them quietly. I don’t make a big spectacle, I don’t even do it in front of Abby. She didn’t even know I told her teachers about her heart until last year. I NEVER want her CHD to define her. She has so many amazing talents and qualities….her CHD is a part of her but does not define her. She is now getting more comfortable with it, she understands it more and even starting to spread awareness and talk about it more with others. But, until she wants to talk about it and share it and tell the world about it, I won’t force it upon her.

There it is…my five things I wish I had known when the journey began. All CHD parents probably have different things than mine. This is a beginning of some of the things I would do the same or differently. Hindsight is 20/20 but awareness can help!

Thanks Nikki!

Monday, February 15, 2010

Drumroll please!!!

You know, I've been so blessed by having this blog. The people I've met.... the ability to share Nate's journey with so many people.... and the feeling of support and care our family has received as a result of people reading it are some of the big reasons why I do it. And I thank you!!!

We know we're about to embark on a new experience - and although waiting for the surgery date isn't always easy - I know there is a whole crew of people out there who are praying for us! So keep checking in here, knowing people are stopping in to read the updates makes the time spent all worth it! And I love hearing from you all too (hint hint!)!!

So here it is: the official Randomly Chosen Number is....

Comment #9!!!!

Yea for Rachelle!!! She can now watch the Olympics in style, with her fuzzy red mittens!!!

Thanks everyone for playing along! I hope you all had a great Valentine's Day! February is "Heart" month, so if you remember, say a prayer for all the heart babies, kids and 'big' kids, too!

Friday, February 12, 2010

I *Heart* You all!!

So, here it is....the first ever little giveaway on the blog! I super excited about it, cuz I'm super in love with the prize. Up for grabs is a brand new adult (size Large) pair of Canadian Olympic mittens!

These things have been in hot demand - and I'm considering entering this contest myself (but I won't!). Hope the lucky winner enjoys them!

Here's the deal. You've got to leave a comment to enter. One comment per person, and you've got till Sunday evening, 11:00pm (CST) to enter.

It's super easy to leave a comment, even if you've never left one before. Just go the bottom of the post and click where it says "Post a comment". If you don't have any of the ID's that are listed in the next screen, just click on 'Anonymous', and leave your comment. Just be sure to leave your name in your comment so I know who the winner is!

I'm looking forward to hearing from LOTS of you! I'll announce the winner Monday morning!

And to make it more fun, here's a question you can answer in your comment:

Which winter Olympic sport are anticipating watching the most? or Tell me what your Valentine's Day plans are!

And just for fun, here is Brady's version of an Inukshuk and the Olympic flame!

A Giveaway??? On this blog?!?

You's my little way of saying thanks for the support we get from everyone who reads our blog!

Check back this evening for details and instructions for how to enter. We're on our way to Winnipeg for an appointment right now, so I'll get things going as soon as we get back!

Here's a pic of what is up for grabs.

Tuesday, February 9, 2010

Just a few...

Just a few quick pics of some the memories of our little holiday!

Lego Land proved to be a hit with both boys.

The Rainforest Cafe provided some nice scenery, good food and great thunderstorms! Loved the aquarium at our table.

The Underwater Adventure was pretty cool for the boys. Brady loved the tunnel. He snapped this picture as a shark swam over him!

The rides gave the Harvest Festival a run for it's money!

And then there was this...

Which led to a few of these...

And of course ended up with a few of these...

Hi Mike. Nice mouthguard. I approve. Good Canadian boy.

And after all the busy days, some afternoons ended in this!

Overnighted in Fargo on our drive back, while they got 8 inches of snow. Good thing we found this pirate ship to hole up in!

Fun times!

Sunday, February 7, 2010

Almost Home!!

I haven't been able to post anything via my iTouch, so I've been at the mercy of hotel lobby computers!! (By the way, can anyone help me with the iTouch issue? Can't get into the body of the post!)

The time away has been great! We were so pleased with our hotel choice (I'm a bit anal that way), it's location was right across the street from 'the' mall, so we always walked, which was great! Spent time there, at the Underwater Aquarium, going on rides, fun restaurants like Rain Forest Cafe (Brady loved the thunderstorms!), the Flyer's game (they lost!), swimming, and of course there was Ikea! I'm not allowed to buy furniture there (something to do with my husband's job!!) but I sure love the other stuff....I mean, can you ever have too many napkins?!?

Right now, we are en route to Winkler. We were warned about the storm heading into the area, so we beat it out of Minneapolis, but caught up to it in Fargo. So we're spending the night here. Found a great hotel with an awesome pirate ship type pool area. We're on night #6 away from home, so in some ways I am looking forward to getting back!

Wednesday, February 3, 2010

Halfway there?

Our holidays have begun!!!

Yesterday I was at work and Don was home with the boys (and packing us all up!!!). Throughout the day, however, I kept thinking, what if that call comes TODAY. Well, it didn't, so we are off to our little get away, and keeping that other thing far from our minds!!

We made if to Fergus Falls, MN last night just around midnight. It wasn't the most relaxing or quiet ride ;) but it also could have been a lot worse!

So, we'll continue on today! Hoping for a fun day and a much better 'night time'!

Don is mocking me for posting a blog at the hotel computer. Whatever!!