Madi's Heart Day

May 21st was Madi's Heart Day...1 whole year post surgery!! The morning was actually a little emoitonal for me as I spent some time reading old blog posts and looking at pictures from our hospital stay. I am still amazed at how incredibly well she has done this past year especially given the complications that arose.

I remember waking Madi up very early that morning for our 5am check in time. We loaded her in the car and she of course was all smiles the whole way there. My stomach was in complete knots but I was trying to stay as calm and relaxed as possible. We waited in pre-op for a while and met a ton of people from the surgical team...anesthesiologists, ICU personnel, the team of surgical nurses, etc. Finally it was time for the dreaded moment. We left the ICU room and headed down the long hallway to the surgical area. We hit the double doors where we had to say our goodbyes. I tried so hard not to cry in hopes that I wouldn't worry my happy girl. We handed her to one of the nurses and watched as they walked back to the OR. They had to turn a corner before they were out of sight...I will never forget what happened next. As they turned the corner, Madi popped her head up over the nurses shoulder for one last glimpse of her teary eyed parents and just like that they were gone. My heart literally fell into my stomach and I lost all composure. We made our way down to the waiting room and there we sat for hours...literally 6 hours! The surgery was supposed to take 2 hours but ended up taking 6. A nurse called my cellphone every hour with an update...all she would say is he is still working and she is doing fine. That was the longest 6 hours of my life! We read magazines, played cards and games, told stories, looked outside...anything to keep our mind off of what was going on. Finally it was over and we met with the surgeon to explain how everything went. He said that it took a lot longer because of some unknown complications. It was the most difficult AV Canal he had ever seen. She was doing well and it appeared that the surgery was a success. He said there was a chance that she may need another surgery in the next few days...only time would tell and the first 48 hours were the most critical. We had to wait for a bit while they got her situated and stable in the ICU before we could see her. I remember walking into her ICU room...it was so overwhelming. It was like something out of a movie. There were at least 10 people in there, machines everywhere, alarms sounding, orders being called out, IV's being hooked and un-hooked, and a sweet little girl laying peacefully in the middle of so much comotion. It was very hard to see her intubated and totally sedated. The days that followed absolutely blew my mind. Each day tubes and wires were being removed and she became more and more alert. She showed us what an amazing fighter she is.

We spent a total of 10 days in the hospital. Her lungs had a hard time coming around and her valves were still leaking a bit. After being home for 4 days were back in the hospital with a staph infection in the incision site. The surgeon had to reopen the top of her scar (all the way down to her sternum) and let it heal from the inside out. She was placed on IV antibiotics for a few days and once her white bllod count returned to normal we were released to go home. Dave and I had to pack the wound with gauze and change it twice a day until it healed ( a few weeks). It was awful! I literally didn't lok at it for a week until I finally got the courage. The truth is, Dave wasn't home one night and the dressing needed to be changed so mom had to toughen up.

It was quite the journey for us and we are so grateful for such an amazing outcome. We had a few setbacks along the way but 1 year later our girl is THRIVING!! Prayers were answered and a family grew stronger! We don't know what the future holds for Madi in terms of more surgeries. There is still is a chance that she will need another repair down the road but for now, everything looks great. We are holding on to that and just enjoying every day with our Miracle Madi!

Happy Heart Day Madi! Of course we had to celebrate with a Heart Party this year. It looked like Cupid made an appearance at our house. I didn't get many pictures of the evening but we had heart decorations, a heart cake, and some close friends to help us celebrate Madi's big day. Here are a few pics from last year and this year. WOW...what a difference a year makes!

No words.

There are no words. Not even one...to try and explain how lucky I feel...how blessed Jenn and I are. Madi muscled her way through a tremendously difficult day a full year ago. I am still frightened out of my mind when I recall what that experience was like...the event was clearly necessary, but scary nonetheless. Now, I think back to the tears, the blank stares, the dreadful passing of time; I recall holding my tiny daughter's even tinier hand while she was in the PICU with chest tubes, IVs, and a large assortment of monitoring equipment that I am still unfamiliar with (and, I wouldn't mind never being acquainted with that environment again)...the memories still bring back tears - tears of fear AND tears of joy. Yes, I am babbling. Partly recalling memories that I have subconsciously repressed and also finding joy that I AM remembering a day that brought a new and profound sense of appreciation for life...not just "life" in general, but the most important kind...my daughter's life. For those families that have yet to put this type of day in their "rear view mirror," there is no way to sugar coat this experience...I will be the first to tell you that this is the most difficult thing that you will experience. However, take solace in the fact that we were also a family on pins and needles-a regular family just like yours. Worried. Emotional. Had nothing to hold onto but each other and a fistful of prayers. We got through the day. The first year. And, our beautiful Madi is thriving. Our prayers are with you as well...wherever you are and whoever you are.

Sweet Little Madi,

I love you. I love you, I love you, I love you. How infinitely wonderful that I get to raise you and spend time with you. Watch you learn, grow, throw fits, laugh, smile, wave, hug me, kiss me, pat my back when I hold you and pat your back, make faces at me, light up when you see your beautiful mommy. Daddy is the luckiest daddy in the world...really. I am looking forward to all the years I get to spend with you and watch you grow, laugh, and live. Give thanks everyday because I always give thanks for you.

Love,
Daddy

A Year Ago...

A year ago today marked the beginning to the most difficult day of our lives. I remember the day so clearly...we were preparing for our daughter's open heart surgery that would be taking place the next morning. How does a parent prepare for that? I remember trying to only think positively but of course the "what ifs" managed to sneak their way into my thoughts. I kept reading and re-reading the packets of information the surgeon gave us. We tried our hardest to act like this was an ordinary day as we packed our hospital bags and tried to think of the most comforting toys to bring for our sweet 6 month old. I was dreading the moment we would have to let go of her and hand her over to the medical team that was going to give her a second chance at life. I remember staring at her chest after her bath that night, knowing that it would never look the same. I soaked up every inch of her beautiful, perfect and pure skin. I of course took a million pictures of her bare chest wanting to record exactly how it looked. I knew that this surgery was necessary. Without it, her life expectancy would only be into her teenage years if that. Still, knowing that didn't seem to be making this night any easier. We had been waiting so long for the day to come. We had known about her heart defect since she was 2 days old and was told that surgery was necessary. There was some relief in knowing that finally we could put this dreaded day behind us and move on. I couldn't wait for the time when we didn't have to worry about blue lips, oxygen sats, weight gain or heart failure.

I knew we had so much support behind us and that meant the world to me. My parents were in town, we had visitors bringing over blankets, meals, hospital survival kits, toys for Madison, magazines, games...anything and everything to help us get through the next few weeks. It was so amazing to feel the love and generosity that was pouring all over our family. Dave and I quietly escaped for a little bit and just sat on our bed and cried...and I mean cried. We talked about our fears, how helpless we felt and how we wished we could switch places with our sweet girl. It was such an amazing moment filled with so much love and honesty. I remember thinking that our little girl was peacefuly asleep for the night and had absolutely no idea what was about to happen to her. I knew our girl was a fighter and that her strength and resilience would get her mama through. I had no idea how profound the impact would be on us. Watching her fight was amazing and I fell deeper in love with my sweet girl...something I didn't know was possible!

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It's A???????????????????

I have been so horrible about keeping up to date on our blog recently. I am seriously going to try and be a better blogger these days. I have also not been the best at taking pictures recently. I seem to forget my camera all the time. It is my goal to work on both of these things...hold me to it! :)

I do want to let everyone know that we just found out what Baby #2 is. It's a .........................GIRL!!!!

We are so excited for Madi to have a little sister. It is also very convenient since we have an enormous amount of pink around the house. Everything looked great on the ultrasound. Although her heart looks perfect so far, we are going to have a fetal echo done in a few weeks just to get an even better look.

Madi is doing fantastic! She is full of personality and makes us laugh every day. We are having so much fun with her. I love watching her explore and learn new things each day. She has completely mastered army crawling and is super fast at it. I can guarantee you it would be much easier on her if she would just get up on her hands and knees to crawl...but she still refuses. She has started pulling herself up to stand and is quite proud of herself these days. Her new favorite game is "where is Madi's...(fill in the body part). She points to her eyes, ears, nose, mouth, feet, hands and hair. She loves to say "Hi" with a southern accent (it is too cute) and wave to EVERYONE. She has 12 teeth and has begun to use them on things other than food...usually my shoulder! She has started feeding herself with a spoon recently and is still working on her manners with that. She has decided that just putting her hands in the bowl of food and playing with it is way more fun than using a spoon. We are still dealing with the throwing phase so her spoonful of food usually ends up on the floor a few times. Having a dog has really come in handy for cleaning up.

I will try and post some pictures soon from our recent trip to Mexico. It is time for mama to get some rest!