August 8,2011 Madie's One Week Anniversary!!

Today was Madie's one week anniversary but if you saw her you would never guess it. On Saturday night we took the entire family (a first) to Harmons Grocery Store for Madie's first outing. She had a blast driving around the store in her electric wheelchair. By the end she had mastered the art of backing up and getting around. On our way home she told me that doing that was on her Bucket List!
Today we figured we would try a day out. So we went with some friends to lunch at Chili's and then the younger girls all got pedi's. It was a great way to start. Madie loved the pampering and having her toes look cute! We did a little bit of shopping and then came home to rest. Later that night Dad surprised her with a steak dinner at Flemmings. Madie has been craving steak ever since she saw it in the menu at the hospital but she never had the appetite to eat it.It was a wonderful night. As they sat us, our waitress asked if we were celebrating anything special and I told her that we were celebrating our daughter being home one week after a major surgery. She asked what kind of surgery and we told her open heart. She about fainted. She was so cute. She apologized for her reaction and said she didn't see that coming. As the night went on our dinner was great and we were just so grateful to be sitting there with Madie one week later. She is healthy and beautiful and so full of life. As we went to leave they brought Madie a delicious looking chocolate cake and took 50% off of our bill. The sweet waitress, Rachel S. was so touched by Madie and so grateful that she was doing well that she wanted to treat her. A few other waiters came over to offer their kindness. It was so amazing to see the kindness given to us by strangers. "Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around." ~Leo Buscaglia

August 4, 2011 Going Home!

The human body is a remarkable thing. On Wednesday morning when the doctors told me Madie would probably go home Thursday, I thought they were out of their minds. She was doing better but she still wasnt eating very well, still in pain, and still not completely functioning. However when Thursday morning rolled around, she was beginning to eat, taking pill medication, walking a little and functioning. She looked like Madie again, smiling, talking, and actually ready to go home. She spent the day trying to meet the goals the doctors and nurses had set for her. We spent some time outside on the beautiful patio, eating ice cream. She enjoyed a few more visitors and then by evening we were ready to head. Before checking out, the doctors wanted her to have another eccho to make sure everything was working correctly. It was amazing! I have witnessed this test a hundred times and there on the monitor I saw Madie's new little valve working as it should with her heart beating away. I was overcome with gratitude. I knew she was all better!
As our time at the hospital came to an end, I left grateful for the opportunity of being there for a few days. I was able to see many of the patients there and I felt as though I was on hallowed ground. These children were all angels. Their eyes were filled will love and hope as if they were the ones helping everyone else get through their trials of life. This remarkable spirit lives in Madie. She has always been full of compassion, empathy, and goodness. I would like to end today's thoughts from something Kenny's sweet Aunt Kathy wrote this week. Her words were reflections of my heart.."We all know that it is through our faith that miracles happen. She certainly must have a great mission to perform during her life on earth. What a special spirit. Won't it be fun to watch this little one grow through the years and reach her potential."

August 3, 2011 Hospital Day 3! Today was a Great Day!

Today started off great! We got almost a full night of sleep. Since Madie was doing so well the nurses checked on her but let her sleep until our 5 am X-ray appointment. And once again we had wonderful nurses.  In fact for those viewing this from our area we had the Ugilini's daughter and the Orth's daughter as two of our nurses. What are the chances! Anyways, today Madie ordered a yogurt and a banana for breakfast. Her first almost meal. And then a baked potato for lunch! She's our heavy weight!
 Madie is almost herself today. She is smiling and talking. She went for a medium walk and she found out she gets to go home tomorrow! Crazy! All of the doctors have said that her reports are great, and she is doing everyting they need her to be doing plus she looks great! She is known as the "TAN GIRL" on the floor. We are so grateful that her body is so healthy considering. She has been this way all of her life. So tonight for dinner she is going to order the New York Steak for dinner! Yes, they have steak for the kids. The adult menu stinks but the kids get the world! The way it should be.
So we will update everyone tomorrow and will have more pictures.  GO MADIE!

August 2, 2011 Hospital Day 2

So we survived our first night in the ICU.  After getting hooked up to everything- so many IV's that they had to use her feet for some, wejust slept. We were blessed to have wonderful nurses at our side for the first 28 hours.  It's amazing because they really do not leave the room. Madie did so well during the night that she was moved to the regular floor yesterday. The morning was difficult because they took out all of the IV'S, her central line, electrical wires, and chest tube out. Yes, Madie had 2 electrical wires put inside her under each lung.  They went up to her heart and then the ends coming out of her attatched to an electrical box in case of an emergency charge.  She was a champ even though it was very painful. The rest of her day was very eventful.  After she started feeling better she began to walk a little for the first time, bathroom for the first time, and a full slushy for the first time. We also had so many sweet friends and family come visit. Even though she was pretty out of it she is very grateful for the visits and remembers who came.  She accomplished all of her first day goals even while medicated.So we will see what is in store for tomorrow!

August 1, 2011 Surgery Day! A Day of Miracles

Today will be a day we will never forget. After arriving at Primary Children's Hospital we waited for 5 1/2 hrs. while Madie underwent her surgery. Even though there was anxiety, a calm, peaceful spirit was felt all throughout the day. The day turned into a day of many miracles. We were blessed with very skilled doctors and nurses that were able to perform a near perfect surgery. Then upon entering the ICU we were told that many of the usual medications needed and used for open heart surgeries were not needed for Madisen. In fact, one of the medications that is regularly used, has only been NOT used by Madie and one other patient in the past 12 years. Tonight she is breathing on her own and she is down to needing only antibiotics and pain medication. Feelings of gratitude are overwhelming at this point. We are so very grateful for a mindful Father in Heaven, whose hand is in all things. We are also very grateful for all of the friends and family that fasted, prayed, sent texts, emails, and phone calls. Your love and support means so much to us and we are truly blessed to have around us so many angels.
Lastly, I wanted to add another little tender mercy that occured today. We ran into a beautiful young woman who has some sort of paralyzation throughout most of her body. She was sitting in her wheel chair behind us at dinner. We had just sat down to eat when we heard this sweet young girl offer a simple yet grateful prayer for her day, and other things. When the prayer ended Kenny and I looked back to see this giant spirit that had just offered the prayer of our hearts. She had just had her feeding tube taken out after 10 weeks of being in the hospital and was eating for the first time. She has 10 more weeks to go.  We left her feeling grateful for the strength these youth have. They are such examples to us.

Our Suprise News!

If you know Madie, you would have no idea that she had anything physically wrong with her. Two years ago while doing a stress test, she ran on the treadmill and blew away the doctors. They could not believe her physical strength. So in March after an MRI was performed, we were all surprised to learn that Madie's valve was leaking 40% of her blood back into her heart, thus causing her heart to start enlarging. Surgery within 6 months was the diagnosis. We always knew it would take a test to determine Madie's health. Her spirit and energy is beyond what most of us wish for.
So this blog will follow Madie's Open Heart Surgery that will take place on August 1, 2011. This will be a journey we will never forget!

Madie's Beginnings

Madie was born June 3, 1999 in Cleveland Ohio. At birth she was diagnosed with Pulmonary Stenosis.