Halloween

Happy Halloween!

Hugs and Kisses from:

Supergirl, Piglet and Optimus Prime

Madelynn's Heart 4

Have you ever seen the movie Finding Nemo?

There is a scene where a group of sea life living in a tank are trying to escape by mucking up the tank and the owner of the tank was to clean the tank and they could make there escape. The starfish wakes up and shouts..."Today's the day, today's the day, the sun is shining, the tank is clean"......the excitement of the day just just turned to dread.

This is the way I felt the morning I woke up in the hospital with Madelynn. It was a beautiful bright morning but I was in a not so happy place and I was going to have to sit in a waiting room for a six hour open heart on my child to take place.

My only saving grace was that I was not alone.........Phil, his mom, his sister, and my parents were all there. Something else in this waiting room was computers to surf the web. I first scanned the web about Madelynn's condition. I read as much as I could until it became too much. except for the bathroom I never left this room.

This was where we would get periodic updates during the surgery. The first one was that Madelynn was ready and the surgery was starting. The second one was to say that when they opened her up their were no surprises. Everything they had studied on her echo the night before was exactly what they found when they opened her up. The third was to tell us they were almost done.

By this point we were all a little stir crazy and the scene turned silly. Six of us were sitting in this cramped little area by choice and texted each other. My dad learned to text that day, my brother and sister from Ohio and Michigan joined in. It was a great comic relief. The next thing I knew the surgeon was standing in the entry way to this cramped little room.

Madelynn did great and there were no surprises. The surgeon was VERY excited at how well everything went. The next 48 hours would be crucial to see how her body reacts to the shock of the proper blood flow she has been without for a little over two months. We would be able to see her soon.

There was a feeling of relief that overcame the space we were in. I was ready to jump out of my skin. I just wanted to see my baby girl. I was so not ready for what I would see................

She was in this old school crib and she had tubes everywhere. She was on a ventilator, had a chest tube, wires hooked to her heart, an arterial line in one arm measuring her blood pressure, IV in the other hand and in her foot and her chest was cut completely open and was now covered in stitches. Her rib cage was split and wired back together. For the rest of her life she will set a metal detector off.

I was afraid to touch her. I just sat back and watched. If it wasn't for Phil I would have just sat there not eating just watching the monitors tick away. I was so afraid. I knew the doctor said the surgery went well but my baby was buried under all of these wire and tubes. Madelynn did suffer some mild complications over the next 24 hours and each time they were able to stabilizer her.

As we have come to the one year anniversary of this faithful day I have a different view. Madelynn has recovered very well. My hope is that one day this will just be a part of history. Her complications she suffered sometimes seemed endless. Each time I thought Lord I just can not do this anymore. I have cried more tears in one year then probably the other 36 years of my life.

However I am not sad anymore. I have a new perspective on life and I am happier then I have ever been. Tonight we will have a celebration in honor of Madelynn's journey. It is not just about Madelynn, it is a celebration for life and the road we travelled as a family. There are so many people we would have never made it without. We want to Thank them, let them see Madelynn today and make sure they realize however large or small the role we would have never made it without all of the help.

So tonight as we share a meal with our friends and family the hope is that we just have fun and laugh. These moments were sometimes non-existed in our journey and we would like to make up for a few of them. Attached is the photo I posted 24 hours after Madelynn's surgery and a current picture of Madelynn that I just know will make you smile, compliments of Grandpa Bacho.

Madelynn's Heart 3

.........."If I had the chance to go back again, take a different road bare a lighter load, tell an easy story, I would walk away with my yesterdays and would not trade what is broken for beauty only"..........



A year ago today my life changed forever. The day started out as any other day. I was up early for work and dropped all three kids off at day care. I worked till about noon. I had to leave Charlotte drive to Indian Trail pick up Madelynn and make it back to the Hospital uptown Charlotte by 2pm. Since the pediatrician visit on the 14th, I really was not expecting much at the cardiologist visit this afternoon.



Completely unphased we travelled through several parts of the cardiologist visit. They put stickers all over Madelynn's body and attached these nodes to take a reading, they checked her weight, blood pressure, length, oxygen level. Then they took us to an ultrasound room and did an echo on her heart. I still was completely oblivious to the fact that the amount of people that were observing was growing.



After the echo they took us back to the original room we started in. A few minutes later the pediatric cardiologist came in sat down and proceeded to talk. ....."your daughter has a coractation of the aorta she will have surgery on her heart in the morning. I am trying to get you a room at the hospital to get you/her admitted.......it should be a fairly simple procedure through her armpit"... The doctor needed to check on our room and left.



Phil and I were dumbfounded.



The doctor was not gone long enough and came back in the door. ......."I'm sorry there is more your daughter's coartation is much more severe than originally thought she will need what is called an extended repair...........she will have to have open heart surgery......we need to run more tests and I need to get you in that room at the hospital.....Please take your time call whomever you need to....you did nothing wrong nor was it your fault this happened she was born with it.....we will let you know when we are walking to the hospital.



The hospital was connected to the cardiologist office by way of a enclosed catwalk.



At this time Phil and I just hugged each other and cried. Our beautiful girl is in real trouble. I looked at Phil and said I am only going to be able to tell this story one time without crying. I called work first. Then I called my mom and broke down. Phil did the same.



I remember that walk from the doctors office to the hospital room I was numb.



Once in the hospital room the amount of people in Madelynn's hospital room kept growing. Madelynn's aorta was very unique. The Children's Hospital is also a teaching hospital so her very unique case drew some of the best doctor's in the business wanting to see it live.



Madelynn fought all through the tests and drugs they gave her and made for a long afternoon and evening. I should have known then what a fighter she would be. At one point they told us we need to do this extensive echo so we know exactly what we are looking at for surgery in the morning. Why don't you two go get something to eat and we can talk with you once the test is over and you have had something to eat.



We went to eat but I don't know what I ate or even if Phil and I said a word to each other during that meal. All I knew was that I wanted to get back to my baby. Sometime after we ate and made it back to the room my dad walked in. I was so glad he was there. I remember he looked at Madelynn and just stood back and let everyone work. He was so patient and just waited. I was still really glad he was there.



At this point I watched the surgeon make this drawing, I made a few notes on it.



After this pow-wow with the surgeon I talked to my dad, returned a few calls and made lots of calls to my best friend the nurse. She helped me keep my cool and soak everything in so I could be educated about the adventure that would begin in the morning.

Thinking back on this day.......I have no idea who picked Katie and Jack up from day care, fed them or put them to bed I just know it wasn't me. I don't know what time I went to bed or if I slept that night. I don't know what time my dad left or what time Phil's mom and sister showed up at our house.

I just know that after one year on this road I wouldn't trade any part of it for a simpler journey. Madelynn was gifted to us, God knew we were the best parents for the job and I was going to make sure this gift wasn't squandered.

June's swimming lesson

Today has been a crazy day. Sometimes in the chaos we miss things or accidentally overlook things. Today in my normal chaos in trying to do my standard of accomplishing too much in one day June almost drowned. She joined grandpa as an injured.

I was experimenting with a Mr. Clean Magic Eraser and quite shocked at the result. Maddie was following me around the house as I experimented. While this was going on I had home-made applesuce brewing on the top of the stove, a chicken roasting in the oven, Katie and Jack were working on some school work. Basically I was all over the downstairs of the house. Suddenly I realized I had gone most of the day without going to the bathroom and I had to go RIGHT NOW. As I lifted the toilet seat this is what I found.

Meet June. She is a character from Disney's Little Einstien's and Maddie dropped her in the toilet. She is about the size of a Fisher-Price Little People. So now before I could go I had to run to the kitchen and find something to fish June out before I turned her yellow. See June under normal circumstances.

A couple days ago Phil got a call from a woman who claimed her toilet was backing up. When Phil got to the house he forwarned the woman that it was very possible that one of her boys flushed a toy down the toilet. She was aboslutely positive that that DID NOT happen. That was until Phil handed her a toy ball he pulled from the toilet. She was speechless.

I am usually very conscience about the bathrooms, the kids and who is in the vicinity of one in the house. Not sure how I missed that one today. Needless to say, June has been sanitized and returned to the rocket with the rest of the Little Einstiens. All is right in the world again.

Have a great weekend!

TTFN

should be exhausted....

My day started at 6am...it was my day off. I took Katie and Jack to school and rushed home to get Maddie her breakfast before the therapist showed up. Therapy went well. I am sure that at review in January we will discontinue services. We also had a meeting with the nutritionist. Maddie weighed 19.4 lbs. This is four more ounces than last week. Woohoo!!! The nutritionist was pleased as she sees constant improvement even if it is slow.

After those meetings were over I started the laundry, repaired the microwave (thanks Mike), carved a pumpkin, cleaned the kitchen, uncluttered my bedroom and got rid of some junk, picked up Katie and Jack from school, stopped at the store, made dinner, and am currently waiting for the dryer so I can put the last load of laundry in the dryer, before I go to bed.

Days like these are good in the fact that I feel like I have accomplished a lot since I can only work three days a week. But I think now I am starting to wind down so I can go to bed. I have found lots of things to do since I am not working. I feel more creative and would have never come up with some of my ideas if I was swamped with everyday life.

I still really want to go back to work full time but I don't know if that is in the cards for me. Not really sure what God has in store for us. We have been truly blessed and showed time and time again God will take care of it all. It is giving it all to God that is the hardest part. I still have a problem with that some days and consistently reminded to back off and let him handle it.

So all though I have been up for 17hours and should be exhausted today was a day where I feel a little bit more complete and we'll see what tomorrow brings.

TTFN

Weekend event

As I watched this weekends weather report come to life I was so disappointed. We had planned to take the kids to the mountains to an apple orchard and let them pick their own apples and have a picnic lunch and come home. However, the morning weather in the mountains was 37 degrees before wind chill and raining.

So about 8pm Saturday night I searched for something closer where it would be warmer and nicer weather. I found an apple orchard that was closed to picking but had a pumpkin patch and hay ride. So off we went. We picked up Grandma Bacho to have extra hands and drove to Moorseville. It was a nice farm, in the spring we can go back and pick strawberries.

So we took the wagon ride, met the farm dog Lady, met all the pigs, lambs, calves and other farm animals that were born this year, picked a pumpkin, picked some turnip greens, grabbed some fresh apples and to home we went. We left about 11am and by 3:30pm we were home. Considering for NC today was really cold almost record breaking it turned out to be a good day.

quick note................

Two weeks ago today I took Madelynn to the pulmunologist and I was really frustrated at the results of the visit. For the past few days Madelynn has been really coughing badly. This morning she coughed up some junk so I took her to the doctor. They are just increasing her breathing treatments for a few days to help her get over this little viral hump.

The best part of the visit is that she gained a half a pound which means she is now 19lbs!!!!!!!!
One more to go and she can have her car seat turned around.

Thank God the girl loves pasta!!!

TTFN~