Sunday, June 28, 2009

It's My Heart National Conference

This weekend my friend Mary and I attended the first annual national It's My Heart conference in Houston, Texas. I was so very scared to fly, but Mary let me break- I mean hold her hand as we took off and I settled down once we were up in the air (until we hit some turbulence...)
Despite my fear of flying, I am SO glad I went.



The conference was well organized and informative. The first speak of the day was a surgeon at Texas Children's Hospital and spoke about the advancements in surgery. It's amazing what the last 50 years has provided us in terms of surgical innovations. In the late 1800's it was considered malpractice to do anything to the heart. The medical community thought that if you do anything to the heart that the patient will die. Cut to 100 years later where surgeons are able to do heart transplants, repair holes in the heart, provide a new lease on life for a child who might otherwise not live to see their third birthday. It really was amazing to see how far CHD surgery has come - and also how far it has to go.
The first breakout session we attended was about genetics. Texas Children's Hospital (TCH) is doing lots of research to try and pinpoint genetic explanations for heart defects. I think research is extremely important and to me is as important or more important than surgical advancements. If we can prevent the defects from occuring in the first place, the children won't need surgical options! I know it's wishful thinking, but I like to believe that by the time Amelia has children, that CHD's will be eradicated. Honestly, though, it's really not a pipe dream - that's likely 25 years from now and seeing what they have learned already, it might not be that far off. However, we need to continue to raise money so that these genetic research programs can continue.
We then had a speak about interventional cardiology. This was fascinating. Dr. Justino is an IC at TCH. There are so many things that they are able to do without doing open heart surgery. He showed videos of the various procedures that IC's are able to do using a catheter and balloon through a major artery (in the arm, leg or both).
The next breakout session was about the family dynamic. The speaking, Michelle, was extremely engaging. What I took away from her discussion was that we should not feel guilty for what our child is going through. We did not cause it, there is nothing we could have done to fix it and that we are doing our best by supporting our daughter through this journey. It's easy to fall into the "why me, why us, why her" trap - but we must accept what we are given and do the best we can with the hand we are dealt. This is our "normal" - we don't know any different and neither does Amelia. Normal is relative....
Finally, there was a panel that included Mike, a 39 year old who had open heart surgery in his 20's, Jill a 32 year old who has had multiple open heart surgeries, and Mark, who at 6 months old underwent a compound surgery for Tetralogy of Fallot. Mark is now 32 and one half of the singing group O'Shea. O'Shea also performed at lunch and were amazing! I am definitely a fan (and promptly downloaded some songs on iTunes when I got home!) These three spoke of their triumps and tragedies with their respective CHDs/surgeries. It was good for us as parents to see these adults who at one time were babies just like ours and have overcome many obstacles and have done well for themselves despite their CHDs. I always tell Amelia she can do whatever she wants with her life - and these three individuals are living examples of that!
I was honestly sad that that the conference was over. It went by too fast. I am so very glad that I went and learned more about the #1 birth defect. It further instilled my drive to support awareness and be an advocate for It's My Heart. It's important for me to make this journey mean something. I don't want it to be "oh, my daughter had a CHD and had open heart surgery when she was 4 months old, but we don't talk about it/think about it". I want her to be proud of what a courageous, brave girl she was/is and I want her to know what an inspiration she is for John and I.
Now I am home - I surived the flight home and didn't need to grip Mary's hand to make it! I felt a little more comfortable on the return trip, but still am not a fan of flying! It's always nice to touch ground!!

Tuesday, June 23, 2009

10 Years Gone By

I had my 10 year high school reunion last Saturday - I was nervous to go, but once I got there had a lot of fun. I remember in high school I always felt insecure. I can definitely say I have grown past that in the last 10 years.
Amelia stayed home with John and they had a good weekend. She didn't really want to nap for her daddy, but was in good spirits all weekend! It was hard being away from her - John told me that "I was calling too much", which I do not think it possible when a mother leaves her 6 month old for two days!!
I got to hang out with my best friend Natalie (Sassy) and got to hang out with my best friend from middle school, Bethany. We had so much fun, it was ridiculous!!
At the reunion, we received a CD with songs from 1999, so on my way home I listened to it. I was jamming to songs like "All Star" by Smashmouth and "What's My Age Again" by Blink 182....then came the last, unlisted song. It was "Everybody's Free (to Wear Sunscreen)". Needless to say I couldn't help from BAWLING while I listened to the song. I remember how my mom used to say "listen to the words of this song" and I would say "whatever mom" and think the song was stupid. But, 10 years later, it's amazing how real the lyrics are. We are all insecure, we all get jealous, we are all scared of something - but why? As he says "the race is long and in the end it's only with ourselves". What I thought was important 10 years ago is no longer important - money, career, "things"....these were all important to me back in 1999. Now, what's important is being a great mom, wife, daughter, sister, friend. Nothing is more important than the health of my daughter and my family. I have said many times that I would give up all of my "material" things to have my daughter healthy and to take away her heart defect.
So, below are the lyrics to "Everybody's Free (to Wear Sunscreen)". It's so much more than just words. I've highlighted my favorite statements.

Ladies and Gentlemen of the class of '99... wear sunscreen.

If I could offer you only one tip for the future, sunscreen would be IT.

The long term benefits of sunscreen have been proved by scientists whereas the rest of my advice has no basis more reliable than my own meandering experience.

I will dispense this advice now.

Enjoy the power and beauty of your youth. Never mind. You will not understand the power and beauty of your youth until they have faded. But trust me, in 20 years you'll look back at photos of yourself and recall in a way you can't grasp now how much possibility lay before you and how fabulous you really looked.

You are NOT as fat as you imagine.

Don't worry about the future; or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubblegum. The real troubles in your life are apt to be things that never crossed your worried mind; the kind that blindside you at 4pm on some idle Tuesday.

Do one thing every day that scares you.

Sing.

Don't be reckless with other people's hearts, don't put up with people who are reckless with yours.

Floss.

Don't waste your time on jealousy; sometimes you're ahead, sometimes you're behind. The race is long, and in the end, it's only with yourself.

Remember compliments you receive, forget the insults; if you succeed in doing this, tell me how.

Keep your old love letters, throw away your old bank statements.

Stretch.

Don't feel guilty if you don't know what you want to do with your life. The most interesting people I know didn't know at 22 what they wanted to do with their lives, some of the most interesting 40 year olds I know still don't.

Get plenty of calcium.

Be kind to your knees, you'll miss them when they're gone.

Maybe you'll marry, maybe you won't, maybe you'll have children, maybe you won't, maybe you'll divorce at 40, maybe you'll dance the funky chicken on your 75th wedding anniversary. Whatever you do, don't congratulate yourself too much or berate yourself, either. Your choices are half chance, so are everybody else's. Enjoy your body, use it every way you can. Don't be afraid of it, or what other people think of it, it's the greatest instrument you'll ever own.

Dance. Even if you have nowhere to do it but in your own living room.

Read the directions, even if you don't follow them.

Do NOT read beauty magazines, they will only make you feel ugly.

Get to know your parents, you never know when they'll be gone for good.

Be nice to your siblings; they are your best link to your past and the people most likely to stick with you in the future.

Understand that friends come and go, but for the precious few you should hold on. Work hard to bridge the gaps in geography in lifestyle because the older you get, the more you need the people you knew when you were young.

Live in New York City once, but leave before it makes you hard; live in Northern California once, but leave before it makes you soft.

Travel.

Accept certain inalienable truths, prices will rise, politicians will philander, you too will get old, and when you do you'll fantasize that when you were young prices were reasonable, politicians were noble and children respected their elders.

Respect your elders.

Don't expect anyone else to support you. Maybe you have a trust fund, maybe you'll have a wealthy spouse; but you never know when either one might run out.

Don't mess too much with your hair, or by the time you're 40, it will look 85.

Be careful whose advice you buy, but, be patient with those who supply it. Advice is a form of nostalgia, dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts and recycling it for more than it's worth.

But trust me on the sunscreen.

Sunday, June 14, 2009

The Last Five Years

I thought I would post my reflection of the last five years. I am hoping I can get John to do the same - but he thinks the whole blogging thing is "weird".


First things first, I NEVER thought my life would be anything like it is! I mean that in a good way. If you would have asked me back in 2004 where I would be in five years, I would have told you "driving a Lexus, married to John, living in a huge house in Grand Rapids, and have traveled all around the world". A lot of things I wanted for my life were built on having "things". I have realized (learned) in the last five years that having "things" does not make your life richer. Love, family, friends - these all make your life richer. I have come to learn that without my family and friends I am nothing, I have nothing. Without John, I would not have someone who knows me better than I know myself. Without my friends and family, I would have no one to call when I am down.

Five years ago if you ask me if I would have children I would have told you an emphatic "NO!" However, last year I realized that I did want children and that I wanted to have the experience of being a mom. It was honestly the best thing that has ever happened to me. I wasn't a big fan of being pregnant and it was not a tough pregnancy, but we did find out that our baby girl had a congenital heart defect and that was really hard. But when Amelia was born in November 2008, it was like I found out who I really was and who I really wanted to be - her mom. She has taught me so much in a few short months - what ultimate love is, what I would do for my child (anything), how I can be brave and strong for her even when I don't think I have it in me. She is a tough cookie and such a joy to be around. Her laugh makes me laugh, her smile makes me smile. Seeing John with her is amazing. It is such a weird feeling to look at her and know that she came from John and I; that I "survived" childbirth (!!); and that she will carry on our family.
I absolutely love being a mom. I have said that a million times and could say it a million more. I had a rough bout with post-partum depression, but thanks to my parents, John, his parents, my friends and a good therapist who prescribed helpful medications, I made it through. It was hard for me to lose "me", but I realized that a job will always be there and that a career isn't even half as important as the job of being a mom. I became a new "me", a better me! I know I am blessed that I get to be home with Amelia and Owen every day.
I don't think I could be any happier with my life than right now. We have a wonderful family with Amelia and Owen, a wonderful extended family, great friends, a great house in a cozy neighborhood - life is good. We really are blessed and I am so thankful every day of where I am in life.

Happy Anniversary!

On Friday, June 12, John and I celebrated our 5th wedding anniversary. It's hard to believe five years have gone by. John was very, very sneaky and planned a night at the MGM Grand Casino/Hotel in Downtown Detroit. He sent me on a little hunt around the house for cards that gave me clues as to what we were going to do. If you know me, I love surprises, but I HATE secrets, so it was driving me nuts that I didn't know what was going on! It was a great surprise though and we had so much fun! Our room was beautiful, we ate awesome food at the Bourbon Steak restaurant in the hotel, and we played our favorite slot, "Wheel of Fortune". I won a little over $400 on a slot machine, which was great!
Amelia got to stay with Grandma and Grandpa Olson. They said she was so much fun. She is such a good baby - so even-tempered (NOT from mommy!), happy, a good sleeper, good eater - I could go on and on!
My parents came down on Friday night to go to the Red Wings game - the Stanley Cup Finals Game 7 versus Pittsburgh. John and I were hoping they would win, as we watched them win the Stanley Cup on our honeymoon in Acapulco five years ago. Unfortunately, they lost 2-1 and the Cup went to Pittsburgh. My parents stayed over at our house and took care of Owen. Of course, he had to sleep with them and my dad took him on a long walk in the morning - spoiled pooch!
We had a great anniversary. Now we look forward to the next five years. Who knows what they will bring?!?!

Sunday, June 7, 2009

What's Goin' On?

Life is more and more interesting every day. Amelia is like a new little person each day. She is just about sitting up on her own, laughing a ton, smiling all the time, eating wonderfully and just being an overall happy baby. She really is so fun. She had a cardiologist visit on Thursday, June 4, which went really well. We were considering switching cardiologists, but decided we really like Dr. Turner. He is really good with Amelia and just is a nice guy. We were just really sick of Children's Hospital, so we felt like we should switch cardiologists, too. We can see Dr. Turner out at Huron Valley in Commerce, which is SO much better than Children's. I took Amelia on my own to her appointment and it is easy - well as easy as it could be to take a 6 month old, a car seat, a stroller, a diaper bag, etc. etc. They weighed Amelia there and she was 16 pounds, 12 ounces and 26.5 inches long, which is CRAZY because she was 15 pounds, 8 ounces just 13 days prior at her 6 month checkup! She really is doing so well! Her xray showed some issues with her diaphragm - Dr. Turner thinks the surgeon may have knicked her phrenic nerve in addition to the vocal cord nerve during the open heart surgery. Since she is not having any issues (i.e. breathing or eating diffuculty) we are just going to let it be. It was a little scary because we were waiting for the 'green light' from the radiologist that the xrays were good, and while we were waiting we heard a page for Dr. Turner. It just turned out that since they had never xrayed Amelia at Huron Valley, they were alarmed by the atelactasis (congestion/collapse) in her left lung as well as the "bubble" in her stomach. She's always had this in her xrays since surgery. Dr. Turner thinks that because her diaphragm is not fully expanding when she breathes, that her lungs are not getting completely filled. This is why she still has the atelactasis over 2 months after surgery. He said he will look at it in November (yes, NOVEMBER, we don't have to go back for 5 months!) and if it is still there, we will do an xray of her breathing and see what is going on.
Amelia then had an echocardiogram, which looked good! She still has two small holes (an ASD and VSD) but Dr. Turner feels that as her heart grows, these holes will go away. She has a small amount of mitral valve regurgitation (leakage) but Dr. Turner said "my mitral valve leaks more than that and I am fine!" So all in all, it was a good visit. The other good news is that her vocal cord is definitely improving! We haven't had any more tests done (not until November 6 at U of M) but she has a GREAT voice and she was crying today (darn gas!) and I said to John, "listen, you can hear her cry" and he was like "oh my gosh, I didn't even notice!" She has her full cry back. She doesn't cry very often, so we haven't really had an opportunity to assess any improvement. She is saying "dada" now - which is so cute. I know secretly I wish she would have said "mama" first, but she LOVES her daddy! She has babbled "mamamamama" and "nanananana" as well as "bababababa", but she actually looked at John and said "hi-da. dada" Like "hi, dad!"
Amelia really is a beautiful, wonderful baby. I can tell she is going to be so smart and do great things with her life. She loves to evaluate things and always has this "inquisitive" look on her face. While the technician was doing the echocardiogram on Thursday, Amelia was just staring at the screen like she was remembering everything she saw - I swear she would've been taking notes if she could write, and speak, and had a notepad and pen... : )
John, Owen and I are all doing well, too! We will celebrate Owen's 5th birthday on Wednesday, June 10! We can't believe our little guy is 5 years old! He is such a cute pooch!
John and I will be celebrating our 5 year anniversary on Friday, June 12. It's crazy that it has been 5 years already. Time really has flown by. If you would have asked me 5 years ago where my life would be in 5 years, I would not have imagined it would be anything like it is - it is actually better than I ever could have imagined. I absolutely love my life right now. I love being a mom, I love my dog, I love my husband - life is good. I thank God every single day that he has blessed me with this life.