Blog Slacker

I have been a blog slacker for the last month or so. So what's happened?
Most importantly, Amelia had a cardiologist visit on November 4. The echo of her heart showed that her holes have closed and that there is minimal valve regurgitation in the mitral and tricuspid valves. Her cardiologist, Dr. Turner, said he would be very pleased if all AV Canal surgeries had these results.
We then got some bad news that Amelia is having preventricular contractions ~ in layman's terms, she has some beats that originate in the bottom of her heart rather than the top. She had to wear a "Holter" monitor for 24 hours to have a continuous EKG. She did very well with it! We sent it back to Dr. Turner and JUST got the results today that he is "not concerned" with what he saw over the 24 hours. He thinks her PVCs are benign and we will just check it out in ONE YEAR! Yes, we don't have to go to the cardiologist until next November! It's bittersweet ~ I like having Mia double-checked, but at the same time, we have to let her heal and let her heart get to "normal". I was so bummed out after the cardiologist visit ~ that it's always one thing after another for my baby girl. Today was happy because we got good news from Dr. Turner!
Mia also had an follow up with the Ear, Nose and Throat doctor at U of M. The doctor scoped her throat to look at the vocal cords and her paralysis is GONE! I got to see it with my own eyes while he scoped her. He also looked at the recording of the scope from June and it is totally different. The doctor said there is no reason we need to come back. Good news!
Amelia is a fighter. She takes all of this in stride. I know she is just a baby, but she could be fussy, crabby, whiney ~ she is NONE of these things during all the tests, waiting and doctor's offices we have to deal with.
So...what's coming up? Amelia's FIRST BIRTHDAY!! Her party is on Saturday, November 21. I am trying to make it the best birthday party ever because how many times do you turn 1? (well, once, I guess!) I am so excited to celebrate her first birthday, but at the same time so emotional about her turning one. It's just surreal to me that last year at this time I was so frustrated that I was still pregnant and wanted to meet Amelia so bad. Now, it's a year later, I made it through "learning" how to be a mommy, post partum, Amelia's open heart surgery, and now, here we are. I never knew how unbelievably wonderful my life would be as a mommy, but it just keeps getting better!

Thank you to my friend Mary who awarded me the "Honesty Award". Here are my "honest" answers!

Here's how the award works:

1. Thank the person who gave you the award and link to their blog.
2. Share 10 honest things about yourself.
3. Present this award to 7 other whose blogs you find brilliant in design or content.
4. Tell those 7 people they have been awarded.

10 honest factoids:

1. I never *ever* wanted to be a mom. I was totally ok with the fact that my career would be my baby. I was never one of those women who says "I want 'x' amount of children" ~ I always said "I don't want kids". Cut to now, I am a stay at home mom of the most beautiful baby in the entire world, Amelia, 11 months. Honestly, I wouldn't care if I never went back to work and stayed home with Amelia until she goes to college : ) I want more kids, too.

2. I feel guilty that Amelia has a congenital heart defect and blame myself for it. Since I was the one that "grew" her, it had to do with something I did wrong. I don't know if I will ever not feel guilty as her life will never be "normal". She will think it is normal (I will do my best to ensure that) but I will always worry and always wonder.

3. I don't like how "Type A" I am and wish I could go with the flow more. I wish I could just let my house be a mess and just chill out more. I battle this every day.

4. When I met John, I always said we were complete opposites ~ in actuality, we could not be more alike. He *IS* my better half. He knows me better than I know myself ~ cliche, but true. It's scary sometimes how alike we are. We ARE that couple that dress alike, even though we didn't intend to.

5. I am angry that I never knew my dad's mom and that all of my grandparents passed away by the time they were 75. I did not have my grandparents at the two most importants days of my life ~ our wedding and the birth of our daughter. I wish Amelia would have been able to know her great-grandparents. They were awesome and I have the best memories of them.

6. I LIKE living on the East Side of Michigan, although I wish my family was here. My parents would love if we moved back to the Grand Rapids area, but we've established our family here and have a life here. Some day I would love to move back to the West Side, but right now I am happy.

7. I like to debate, but some times don't know what the heck I am talking about.

8. I wish I was smarter. People say "oh, you're so smart" but the truth is, I'm just "normal". I try to read a lot and become more learned, but I get distracted : )

9. I miss high school and college every single day. If I could repeat them both, I would, in a heartbeat. I get sad every year around Back to School time.

10. I am extremely jealous. I always want what everyone else has, even though I am SO blessed and I know it. Must be the Scorpio in me.


Unfortunately I don't have any bloggers to award because I don't have any Blogger friends other than Mary!!

An Angel Left Her Wings

I found this poem when I was working on Amelia's 1st Birthday slideshow (which I will post when it's done). This completely encompasses how I feel for her.

An Angel Left Her Wings

I have this little angel. For me she left her wings.
She has no idea how much happiness she truly brings.
She brightens up my days with her smiles and her laughs.
She helps me to remember all the blessings that I have.

Her face, it is so perfect, she's sweet and soft and pure.
Sometimes she can be willful and sometimes she is demure.
She tries her very hardest to please and do what's right.
She gives the greatest hugs from morning until night.

Every person that has known her sees this light within her soul
I know that in this whole great world, she has a special role.
She's helpful and considerate to everyone she knows
This light in her shines brighter as my angel grows.

When she sees someone is sad, it opens up her heart.
She wants to do all that she can; she wants to do her part.
She'll squeeze away the sorrow and make me forget about my pain.
She shows me where the sun is when we're hiding from the rain.

I know that God must love me, He showed me with His Grace
I knew just how completely when I saw my angel's face.
And in that very moment when she came into my world,
I knew that she was so much more than just my baby girl.

She would be my sunshine, with a sweetness that won't end.
And when she grows up one day she would be my closest friend.
She would be the reason I would always try my best.
For my little angel baby girl would be my greatest test.

When God entrusts to you an angel, who has left her wings for you.
Encircle her with love with everything you do.
Let her know God made her, and that He trusts you with her care.
Be sure to make time for special moments with her to share.

And when at night she finally says her prayers and goes to sleep
I Thank Him for my angel, and ask for him to always keep
A watchful eye and hand to protect her from this world.
Protect my little angel; protect my baby girl.

© Tina M. Marascia

Is It Ever Really "Gone"?

By "It" I mean Amelia's heart defect. John and I seem to have a battle between "it's over and gone" and "she will always have a heart defect". I'm sure you can guess that I am the latter of the two opinions. When I tell people about Amelia's heart defect, I never know whether to say "has" or "had". She has a "different" heart....she will always have a different heart. Her mitral and tricuspid valves are her own tissues, but they are artificially created. She has a patch between the two atria and a patch between the two ventricles. This tells me her defect is never "gone"; her valves could leak; she still has holes at the site where they sutured the patches and these holes could never heal and may need to be fixed...how can I not think about her heart every single day?
We went to the Pediatrician today to get Amelia's second flu shot. The good news: she didn't cry one bit (which shocked the nurse and made his day!); the bad news: she's lost a little bit of weight (only a few ounces). Of course, the first thing I think is "is her heart ok"? I have to stop and remind myself that she was weighed on a different scale last time, she has been more mobile, her eating is not "perfect" in that it's not a strict amount of formula each day because she is eating less formula and more "big" people food now. My mind still flips around between the "what ifs".
It's hard, as a mom, to not think about the "what ifs" all of the time. I can't imagine what I would do if I did not have Amelia in my life. I looked at her today and said "thank you for being my daughter. I don't know what I did in life to deserve you, but I am so glad I did it." I honestly thank God every day that I did something right in His eyes and he blessed John and I with my "Mia Bella", my "Mia Bedia", my angel, my "pretty pretties".
I would never wish what our family has been through on my worst enemy. Some people think I am "dwelling" on her heart defect by starting a chapter and working with It's My Heart. I see it as an opportunity to help other families in the same situation and to hopefully see the day that no family and no child EVER have to experience a CHD.
I guess I have answered my own question. No, it is never "gone". It is never going to be something I don't think about ~ but I don't dwell, I let it allow me to love my daughter that much more and to support and empathize with others in the same situation.

Where has a year gone?

In keeping with my "holy cow, Amelia is almost one" theme....today I made a "Save the Date" email for her first birthday. I still can't grasp the fact that she is going to be one in just over 2 months. I remember last year at this time I had just had my baby shower and I was SO ready to meet my baby girl. I spent nine months wishing for time to go faster and now I have spent the last 9 months wishing it would sloooowww doooowwnn. I enjoy spending time with Amelia and I miss her when she goes to bed at night! She has such a cute personality - she is "dancing" when she hears music or we sing to her; she claps her hands when you say "yay, Amelia!"; she drinks from a straw; she is starting to eat "big girl" food (she had hummus for the first time today and loved it); and she is babbling like crazy. I feel like I am going to wake up tomorrow and she is going to be 16 and wanting the car keys. I am so excited to see the person she is going to become, but at the same time I am so sad that I can't just freeze frame our life right now. I just do what I can to make every moment mean something and to enjoy every millisecond with my little girl.

Growing Up Too Fast!!

My baby girl...anyone have a "pause" button for life? I'd sure love to use it.

Amelia is 9 months old!

Yes, believe it or not, our baby girl has lived equal amounts of time outside my tummy as in my tummy. She is growing up too fast. I wish I could find some way to freeze time. Each day goes by too fast, each week even faster, and each month is like light speed.

Amelia had her nine month check-up on Monday and weighed in at 20 pounds 7 ounces. She is 28 inches long and her head is about 18 inches around. The Pediatrician's office was undergoing a remodel, so we didn't get our usual check-up stat sheet that detailed the percentage categories she was in, but from what I've researched she is 70-75% for weight/height and 90-95% for head circumference. Not too shabby for a baby girl who had open heart surgery just 5 short months ago.
Amelia is a chatty Cathy and a laughy laugherson too! She is always smiling and giggling. I swear she is starting to say "ball" and understands when you tell her to do "patty cake". She will clap her hands and giggle.
So, since I can't freeze time, I just make sure to enjoy every second with her! We have been hanging out with our Parent Group friends, Lisa and Joseph and Elizabeth and Brady, and we start Kindermusic again on September 9.

Two Toofs!

Yes, it's official - Amelia has teeth! TWO teeth! She got her first tooth (bottom, front, right) on Friday, July 31st and her second (bottom, front, left) came in on Saturday, August 15th!
I thought it would be so weird to see her with teeth after enjoying her toothless grin for eight-and-a-half months, but actually it is so cute! She looks absolutely adorable with teeth!
I am now calling her "shark tooth" because those little chompers are sharp! She bit daddy's nose yesterday (duh, daddy, don't put your nose in the mouth of a baby with new teeth!) and it hurt!
You would've never know Amelia was teething, either. The first tooth, she was a little "off" but nothing terrible. The second tooth, she was a tiny bit "off" but not bad! She wasn't drooling a ton or anything, just chewing on everything - which she has done since she was about four months old! She is such a good girl (do I say that enough or what??!!)

It's Been a While!

As the title says, it's been a while since I last blogged!
First and foremost, Amelia got her first tooth last Friday, July 31! She is no longer a toothless wonder and now has a very sharp "shark tooth"! It seems like the next one is sure to follow, but has not made its debut!
We've been going to Music in the Park in Downtown Plymouth with our friends Elizabeth and Brady. Amelia enjoys music so much and it's a nice time for us to be outside this summer! Last week our friends Lisa and Joseph came, also! Amelia doesn't quite know what to think of the boys tackling her, but she is toughening up ~ just as long as they don't impede her princess-ness!!
We also went swimming in Milford this week. She really LOVES the water. I do, too, so I am glad that she likes it. We just floated around the pool and she was so relaxed and chill (her usual demeanor!).
We tried to take her for her first beach experience last weekend, but Mother Nature had a different plan. The winds were like hurricane force and it was quite cloudy. We snapped a few pictures in the beach grass, which Amelia thought was quite tasty, and headed out. Good thing we left when we did as the rain came in full force soon after we got on the road. It made for a good Target trip day with Nana, Papa and Auntie Beth!
That's about all we've been up to. Amelia is growing so fast and babbling up a storm. Mama, Dada, Papa, Baba, Mom - all in her current vocabulary. She's been doing tons of tummy time, too, and has gone from a sitting position to a crawling position all on her own! She'll be on the move soon!
Her 9 month check up is coming in two weeks. I'm looking forward to seeing her stats!

That's all for now!

I Could Not Ask For More....

To many people, "I Could Not Ask for More" is a song by Edwin McCain. It was "our" song for John and I in college. Whenever we were going through something bad and I heard that song, I knew everything was going to be okay.
This song title has become much more than words for me - it is a way of life. I honestly could not ask for more than how great my life is. I feel blessed every single day to have John, Owen and my beautiful baby girl Amelia. I just wish I could hold her and kiss her all day long, every single day.
My friend Mary posted a link to a blog about a family whose baby girl Kinsey died at birth. They then got pregnant again and their son was diagnosed with a fatal genetic condition called Trisomy 18. He died 5 days after birth.
I could not help but cry when I read this blog - who wouldn't cry? It just makes me so grateful for Amelia. I am so grateful that I get to be home with her and enjoy her smile, enjoy seeing her in her "cibby" each morning when she wakes up and kicks her legs in her "sleepsuit" and laughs. I can't imagine ever losing her, not being able to see her smile ever again. I don't ever want to take motherhood for granted, because some may never get to experience it.
Hold your child tight, hug them, kiss them, tell them you love them. There are so many that don't get to do that!!

I love you, baby girl.

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!!

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.

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?!?!

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.

Amelia

On November 24, 2008, God blessed us with our little miracle, Amelia Elyse Olson. She weighed in at 8 pounds 11 ounces and was 22 inches long. I will never forget that moment, shortly after 9:47pm that we looked each other in the eyes. I had an overwhelming feeling of excitement, joy, elation. For 40 weeks and 5 days my body sheltered this little girl and now she was here for the world to enjoy - no longer just mine.
We knew Amelia had a congenital heart defect called atrioventricular septal defect (AV Canal defect, endocardial cushion defect). It was diagnosed (and later confirmed through an echocardiogram (ultrasound) of her heart, in-utero) on June 27, 2008 during my "regular" anatomical ultrasound. The day started out full of excitement - we were going to find out the "flavor" (as I called it) of our little Peanut. I was nervous and excited....I thought FOR SURE the baby was a boy. I wanted a boy - and then the sonographer asked if we wanted to know what the baby was - after John and I both said "yes" - she announced that it was a girl! For a second I was shocked and then I got really excited. Then the sonographer continued to look around and kept focusing on the heart. We really didn't think anything of it, we had never been through an anatomical ultrasound before. She said "let me go get the doctor" and we still were not worried. It was not until Dr. Puder (a doctor at Huron Valley Sinai) looked at the images and broke the news that she highly suspected that our daughter had a congenital heart defect and explained AV Canal Defect. The next blow when she told us that 50% of babies with AV Canal had Down Syndrome. Another punch to the gut. My heart sunk, my stomach dropped, I didn't know what to say, what to think. What did this all mean? Was my baby OK? Would she be "normal"? Would I be able to hold her in my arms? Dr. Puder proceeded to tell us that she would perform an amniocentesis if we would like to know if our daughter had any genetic abnormalities, including Downs Syndrome. We both said yes, as we would want to be prepared. We waited two hours while she finished with her other patients and all we could do was cry. We both called our parents and shared the news. Between the two of us, we have three nieces and one nephew and all four of them are perfectly healthy. We knew NOTHING about heart defects. Frankly, nothing like this had ever crossed our minds. We just assumed our baby would be perefectly healthy.
I couldn't believe at 26 years old I was having an amnio. I wasn't scared or nervous, I knew I had to do it. Normally I would get all worked up and worried, but I just did it. We left the hospital with a hollow feeling in our bodies. We prayed so hard that our baby would be healthy. All I could pray (BEG) was that God bless us with a healthy little girl. I kept thinking of all the times I said that I never wanted children - I never wanted anything more in my life than to hold my little girl and tell her I love her more than anything in the whole world.
On Monday, June 30, 2008, I got the call from Dr. Puder stating that our little girl was genetically perfect. I had to have her repeat it three times just to make sure. The Fish Test (the initial amnio results showing if the child has Trisomy 13, 18, or 21 (Downs Syndrome)) came back normal. Two weeks later we got the full results that everything was perfect. I have never been so grateful in my life.
Over the remainder of my pregnancy, we came to terms with the reality of having a child with a heart defect. We knew she would need surgery between two and four months of age. We were told she might not grow well. We tried to arm ourselves with as much information as possible. We had our "confirmation" echocardiogram with Dr. Humes at Children's Hospital of Michigan on July 7, 2008, which confirmed what Dr. Puder already had told us that she had Complete AV Canal Defect. We followed up on September 15, 2008 for another echocardiogram, which showed that her valves were growing at the same rate and that the defect was only growing in relation to the size of her heart - it had not gotten any larger.
AV Canal Defect essentially means that the middle of the heart is missing. There is a whole between the top two chambers (atria) and between the bottom two chambers (ventricles) and a common valve, rather than two separate valves (mitral and tricuspid). In addition to AV Canal Defect, Amelia also had a patent ductus arteriosis and a patent foramen ovale.
Amelia was born and looked PERFECT. She had big blue eyes and a full head of black hair. John watched the whole thing as I screamed and told him to "stop smiling", "look at the floor"! I didn't think I was going to make it - then after 40 minutes of pushing (and Dr. Gordinier barely being able to catch her!) she was laying on my stomach. I couldn't believe how absolutely gorgeous she was. I had never felt that rush of love in my heart. John and I love each other so much, but I never knew THIS kind of love. The love that makes your heart smile. The kind of love that fills you until you feel like you are going to burst. It was an amazing moment. I still can't believe that I didn't think I wanted a baby. In that moment, I knew this was meant to be.
Amelia did very well her first few months. She was gaining an ounce a day and eating very well! We had trouble nursing, so Amelia was on formula - she didn't care, she just wanted to eat! I think she just didn't want to work for the food and my body didn't have a good supply. I was devastated, but we still developed a bond through bottlefeeding.
Around 10 weeks old, I noticed Amelia wasn't gaining weight. I took her to her pediatrician, Dr. Lippitt, who palpated her liver and also weighed her and confirmed she was not gaining weight (she was stuck around 12 pounds). Her liver was also enlarged, which was a sign of congestive heart failure. She spoke with Amelia's cardiologist, Dr. Turner, and he instructed us to put her on a diuretic called Lasix. The next week we saw Dr. Turner and he upped her dosage of Lasix and put her on another diuretic called Aldactone, which replaces the body with potassium, which is depleted by Lasix. Her weight gained picked right back up and she was doing beautifully!
Her open heart surgery was scheduled for March 30, 2009 with Dr. Walters, a well-known cardiovascular surgeon at Children's Hospital of Michigan (CHM). In February, Dr. Turner broke the news to us that Dr. Walters was going to be on leave and asked us to move the surgery to May 4, 2009. I immediately said "no way"! March 30 was a "D" day for us. It was this black cloud that hung over our heads. There was no way we were going to wait another 5 weeks to have the surgery. Although Amelia was doing fine, it just felt like we couldn't move on with our lives. We lived our lives in two worls - the "before" March 30th life, and the "after" March 30th life. We didn't know what our lives were going to be like "after". We only knew that it couldn't wait any longer.
Dr. Turner was able to schedule our surgery with the other cardiovascular surgeon at CHM, Dr. Delius. I couldn't help to feel like we were short changing Amelia in some way by not having Dr. Walters as her surgeon. Dr. Turner told us he would trust his own son's life with either of the surgeons - this gave us some comfort. I went back and forth with the thought "what if we should've waited for Dr. Walters", "maybe we shouldn't do the surgery at all" - I prayed, bargained with God, cried - I was just so emotional. I thought I was strong and tried to put on a brave face, but my heart was aching, my head was going back and forth between the "what ifs?" What if I never saw my daughter again after the surgery? What if there was more than they thought and her heart couldn't handle surgery?
On Friday, March 27, 2009 we had Amelia's pre-op evaluation. She had an X-ray, echocardiogram and blood draw. I felt comfortable after we left there that day and had a sense of peace that all would be well. As Monday drew near, however, that sense of peace vanished into fear and panic.
Monday, March 30, 2009 we brought Amelia to CHM. We waited with her in pre-op, removing her pajamas and dressing her in a little yellow hospital gown that we coined her "Princess Dress". She was so calm, so brave. She fell asleep in my arms. The chaplain came to say a prayer and John lost it. It was like it all became real for him at that point. The anesthesiologist took Amelia from my arms and carried her to surgery. It felt like she was carrying away my heart. I prayed that God would carry her through the surgery and would guide Dr. Delius' hands while working on her tiny heart.
The cardiovascular nurse kept us updated during the surgery and finally at 12:45pm she came in to tell us that Amelia was all done and that Dr. Delius would be coming in to speak to us shortly. Dr. Delius came in to tell us she did wonderfully and that her valves were not leaky. She still had two small holes due to the suturing of the patches, but he believed they would heal as she grows. We got to see her a few minutes later as she was wheeled up to her room in the Pediatric ICU. It was a moment even more powerful than her birth - she looked beautiful. She was a bit swollen but her lips were so pink and she looked so peaceful. I thanked God and prayed that he would continue to help her through recovery.
Amelia did beautifully the first day and was taken off the ventilator on Tuesday morning around 5am. Her condition started to deteriorate on Tuesday. Her stats were all out of whack and then she aspirated formula while drinking a bottle and she desatted (her oxygen levels in her blood went way down) and her lips and nose turned all blue. I had never seen that before. I did all I could to remain calm and help the nurse pat her back and help her cough up the fluid. This happened once more that night. Then around 11:30pm the nurse called the doctor on call, who came and did an echocardiogram in the room. After looking at the heart, he told us that she had pericardial effusion (bleeding around the heart) and that they were going to have to try to clear her drainage tube. It was a miracle that the entire cardiovascular team was waiting at the hospital to do a heart transplant and were just sitting around waiting because the heart was delayed. The cardiovascular fellow came and tried to get the clot out of Amelia's drainage tube. They did get a clot out, but still could not get the blood out from behind the heart. They decided that Amelia would go back into surgery and have a drainage tube placed behind her heart. The cardiovascular team took her from us at 3:30am. This surgery was even more scary as we had no time to prepare for it. We had nine months to prepare for her first surgery. I made Dr. Delius promise me that Amelia would be OK. He did. John and I called our parents to tell them she was going back into surgery. My parents had driven back to Spring Lake earlier that night and immediately packed their bags back up and came back to Detroit. John's parents told us they would be down immediately. It was so scary - I cried, shook, prayed. John was so calm. He trust Dr. Delius in his promise, I questioned how he could promise anything. Shortly after 4am, Dr. Delius came out to tell us Amelia was fine. He took out the original drainage tube and put in two tubes, one in front of her heart and one behind. He got most of the fluid out from behind her heart. It turned out to be serrous fluid (the clear fluid before a clot) rather than blood, but either way it had to be removed.
Amelia did wonderfully the rest of the week and was discharged on Monday, April 6, 2009. It was scary to take her home at first - even more scary than when she was a newborn. We were sent home on the same medications as before the surgery and with one instruction - no lifting under the arms for six weeks. I was nervous - how was I going to care for a baby who just had heart surgery? But we got home and it was like nothing had changed. It was a relief and comfort to be home - to sit on our couches, to lay Amelia in her own crib, to sleep in our own bed, to let Amelia rock in her comfy swing.
Amelia was healing beautifully and doing very well at home. We had a few scares in which we thought she was breathing too hard and rapidly, but after taking her to CHM, we were told she was just fine. Five weeks after surgery she developed a really weak cry - it was raspy, forced, breathy - it almost had no sound. We thought at first she was experimenting with a "new voice" and that is was just a developmental thing, but then it got worse. We took her to the ER at CHM and they admitted her so that they could have an ear, nose and throat doctor look at her. The next morning she had a bronchoscopy that indicated she had paralysis of her left vocal fold. It was like another punch to the gut - why did these things keep happening to this beautiful little girl? Hadn't she already been through enough? We were not given any real answers as to why, how, when. We left CHM with a million questions and not very many answers. Would our daughter be able to speak? Would we ever hear her say "ma-ma", "da-da", "I love you"?
I got in touch with my college friend, Chrissy's, brother Dr. Taylor who is a pediatric ENT at The University of Michigan. He explained that vocal cord paralysis was very common in children who had the patent ductus arteriosis (PDA) closed during open heart surgery. The vocal nerve runs very close to the PDA and in 20-30% of children who undergo closure, vocal cord paralysis (always on the left side) is a common side effect. It was slightly comforting to know that she wasn't the only one that this happened to, but it was still overwhelming.
On May 20, 2009, we took Amelia to Mott Children's Hospital at U of M to have a swallow study and to meet with Dr. Taylor. During the swallow study she drank her bottle, which was filled with barium, as the radiologist and speech pathologist watched it on the screen. She also ate some oatmeal that had barium in it. She did wonderfully and there was no sign that formula/food was going into her lungs - finally some good news.
We then saw Dr. Taylor who did a scope down Amelia's nose to look at the vocal folds. He showed us that the left fold had some slight movement and told us that he thinks the left fold is coming around. More good news. He said he didn't see any reason why Amelia wouldn't have full speech capability. He told us that we should come back in six months and they would check it again, but that he felt it would improve. We were so excited to leave a hospital with good news about Amelia. All the while she was smiling with her big blue eyes and gorgeous smile.
Amelia truly is a miracle. She has been through so much in her short life and has remained so brave and courageous through it all. She hardly ever cries during a procedure and doesn't ever seem to fear what is happening. She is an example to us all. How can we complain about simple things in our life when she has been through so much?
We continue to pray every day that Amelia will continue to recover and will keep growing into a beautiful, strong, happy little girl. There is not a day that goes by that I don't look at her and smile and thank God that she is mine. She is my own little piece of Heaven, my own little miracle.
I know now that we were blessed with Amelia for a reason. So many people have said "you are so strong, you are so at peace with all of this" - the truth is, I have no choice not to be. I can choose to dwell on the fact that my daughter has a heart defect, or that she is not 100% healthy, but why? There are so many things in life that could go wrong, but I have a gorgeous little girl that fills the room with sunshine when she smiles. I know that God sent us Amelia because we are strong and have an extensive network of supportive family and friends. There were/are so many prayers and well wishes for Amelia. I know, too, that God never gives us more than we can handle.
My mission now is to spread awareness about congenital heart defects. Through Amelia's journey, I met a friend, Mary, whose son, Drew, had a CHD called pulmonary stenosis. Mary, like myself, wanted to spread awareness about CHDs. She asked me if I was interested in starting a chapter of an organization called It's My Heart in the Metro Detroit area. There was no question - I told her yes! We now have a chapter started and are working on fundraising events to help us spread awareness about our organization and to share our children's stories in hopes that awareness will bring more research to the #1 birth defect.
Life is good. God is good. We are thankful every day for miracles. There is no way that one can look at Amelia and not see God's work and not see a beautiful miracle. Our lives are truly blessed by this little girl and we are eternally grateful to call her our daughter.

The First Blog!!

So I am completely new to "blogging"....I thought I would jump on the bandwagon, since everyone is doing it! We are the Olson family - John (husband/dad), 28; Andrea (wife/mom), 27; Amelia (daughter), 5 months; and Owen (pooch), 4 years. John and I met at Western Michigan University in 2000 and the rest is 'our'-story! We live in a cute little ranch on Redbud Avenue in a cute little subdivision called Plymouth Estates in Plymouth, Michigan. We've lived here for five years now. John and I will be celebrating our fiftth wedding anniversary on June 12. Our pooch Owen will be five on June 10th and our daughter Amelia was born on November 24, 2008. John and I have really embraced being a family with our daughter and "fur son"....life is so much fun now (busy, but fun!). John works at Thomson Reuters as a Senior QA Analyst for their GoFileRoom product. I am a stay at home mom (I was a financial analyst before I had Amelia).