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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~

Madelynn's Heart 2

A year ago today was the day we thought that we would get some answers.

We went to the pediatrician for just a two month check up at least that's what it was when I made the appointment in September of 08. However the day before, the Urgent Care Doctor sent the x-ray to the pediatrician and it changed our appointment.

Madelynn has a boot-shaped heart. What does that mean?? The pediatrician did not what to speak out of turn until the cardiologist got a good look at her heart. He told us not to worry if Madelynn had a serious heart condition she would display other symptoms. She was not displaying ANY of these other symptoms.

So again I left another doctor with almost no answers but with more than I knew the day before. That evening I spent researching through the Internet all of the terms I heard the doctor say. I felt a little better because the doctor was right. Madelynn truly did not display any of the symptoms for a child with a boot-shaped heart.

We had an appointment for October 29Th 2008 to see the cardiologist. So again we were in another waiting game this one was a little bit longer, about 15 days.

There was still something that we had not done. Other than each other Phil and I had not told ANYONE. We needed to tell our parents and other family members. My parents were visiting my sister. I did not want to call and put a damper on that visit and I truly did not know that much as it was.

So sometime over the 15 day waiting period I sent out an email that included the most important people we wanted to tell. I know it sounds cold to send this type of announcement in an email. However, this was the best way I could properly tell everyone the same story, not leave anything out or exhaust myself from crying or telling the same story over and over again.

I was trying to stay positive as I have older children to worry about. The more I talked about it I knew I would just cry and I didn't have the energy for that right know. The days I carried it around without telling anyone made it a dream just unreal at this point. I watched Madelynn like a hawk but saw nothing. Just normal everyday baby stuff.

Things were so normal in fact that we were not ready for journey we were about to undertake.

Or were we??

TTFN

Mother's

This evening I watched six children both mourn the loss of their mother but also celebrate her life. As I watched the children talk about the life they had with their mother, it was amazing. Even talking about times they got in trouble or weekly rituals they hated made them laugh. The treasured memories that are burned in their minds forever. This was a great mother, just knowing her for almost 10 years changed part of my life forever.

But I also have the luxury of a remarkable mother. On the important stuff she is never wrong. Her unconditional love is amazing, her sense of humor will keep you in stitches and her grace the way she goes through life is beautiful. Sometimes it may not seem like it but I wouldn't trade even a minuscule of time with her for anything.

Then I know way too many people who have had to bury their mother at way too young an age. Their whole world shattered. Unsure how to live life without her. No more Sunday lunches, no more early morning calls to help get the day started, no more Saturday shopping ventures, no more chats over coffee, all of those special moments that you only shared with mom, gone. Trying to continue that special time without her just isn't the same and trying to fill that space with something else can be so painful.

So here is what I don't understand.............In my life time I have heard children say I hate you to their mother or worse call them names. This is the woman who carried you for 9 months, rocked you into slumber while operating an maybe 3-4 hours of sleep herself, the bible even says Honor thy father and thy mother. I know people who spending time with their mother is simply too much trouble.

Currently, I have a friend who has been caring for her mother for about two years. Her mother has Alzheimer's and it makes some days very stressful and difficult. In recent days, her mother is very hateful and mean to her. Her mother is ill and she is just trying to give her the best care possible and it is really taking a toll on her. In about a month or so her mother will go to a home that will better care for her medical needs. Sometimes I get calls from her and she is really frustrated and she can't wait for her to be at the home. This is a new facility that is being built they are just waiting for it to be open.

I ask her you don't really mean that. Then I say one of these days she will be gone and your heart will have a hole that will never be filled again. You will miss her when she is gone. At this point there is a BIG sigh in the conversation. I get some type of response like yes I know. It is kind of like I replenished her because I reminded her life will not always be like this and cherish what little time you have left.

Mother's are a precious gift and never not even for a second be taken for granted.

I love you mom~Chelsea

TTFN

Madelynn's Heart 1

Today is the beginning of a series of anniversaries. This is the day that everything about my life changed forever.

As we reach another anniversary, I will tell you about that day.

First thing in the morning I took Madelynn to the Urgent Care for a really bad cough. An x-ray was taken to make sure there was no fluid in her lungs. There was not. However, the Urgent Care Doctor was uncomfortable with what her saw and wanted a second opinion. He sent us home and said he would call after he received the second opinion.

I was sitting on the couch and the phone rang...............

I was told that Madelynn's heart was abnormally shaped and that she needed to see a pediatric cardiologist. The Urgent Care doctor told us that we needed to call the pediatrician as soon as possible and to call him Monday morning. As the Doctor spoke tears streamed down my face faster and faster.

By this time, Phil did not know what the doctor had said but he knew I was upset. Kaitlynn and Jackson saw me crying and rushed to my side. "Mommy, Mommy.....what's wrong!!!" I took a deep breath and told Katie and Jack this..............

Do you know what the shape of a heart is.....and I traced the shape of a heart where Kaitlynn;'s heart is? Yes Mommy. Well Madelynn's heart is not shaped like yours. They think she has a very special heart. In a few days we are going to see how special her heart is.

At that moment in time I have no idea where those words came from. My mouth was moving but I should not have been able to actually speak those words so my other children would not be afraid. Kaitlynn seemed okay with that and she and Jack went back to play. Phil calmed me down and told me not to worry until we knew something concrete. However, my racing mind got the best of me. I tried to remember some of the key words the doctor had said and started surfing the web. This was a bad idea.

There were way too many possibilities and my heart couldn't handle most of them. So I cried myself to sleep and would have to wait until we saw the pediatrician. Madelynn already had an appointment for shots in two days. So I just had to wait 48 hours. Easier said than done.

As this journey progressed, I would soon find out that this Urgent Care doctor, Dr. Alfred Kendrick, saved her life.

TTFN

Good-Bye Mama Kay

The last 5 days have been pretty busy but also very sad. Due to some complications my friend from work has fallen into a coma and is beyond recovery. Her children are all coming together this weekend to say a final farewell and turn all of the machines off Monday. See previous post here. I have cried a lot over the last 36 hours and today at work realized how much I will miss my friend.

My hope is that her family finds peace in her passing and I know in my heart God is waiting for her with open arms. Her husband passed away about 25 years ago, I am sure he is waiting for her. Good-bye Mama Kay I will miss our morning chats.

TTFN

Just some new photos

About a week or so ago I realized I needed to clean out my camera memory card. Over the last two months I have been taking pictures but did not edit them or clean them off the memory card. When Phil and I renovated our Master bed and bath about three years ago we did it in shades of browns. The top half of the wall is a color called antique lace and the bottom half is coffee.


If you ask me the top half looks like the color of of an aged doily, while the bottom half looks like I smeared a Hershey bar on the wall separated by a white chair rail. When the room was finished I decided to decorate the walls with only photos of the kids. These will be the additions to the walls.

So here is Katie.....

Then we have Jack......

Last but definitely not least we have Maddie.......

Not sure what I will do with this one???........ Daddy and Maddie sharing a Froot Loop....

TTFN................

Cheerleading

Back in May we went to Katie's Pre-School Graduation. On the back of the program it lists all of the graduates and what they want to be when they grow up. Of all things......Katie said Cheerleader. When Katie cut and donated her hair her only disappointment was that she couldn't put her hair in a ponytail like a cheerleader. Needless to say Phil and I got the point.

Over the first few weeks of elementary school as a parent you are always inundated with tons of events and activities for you and/or your child to participate in. We decided that when the cheerleader flyer came home that we would let her participate. Today was the first class. The parents are only allowed to be in the first class and the last class. It is too distracting to the girls.

For Katie she was very excited about the class. We figured since she was missing her old classmates and school maybe this would be a good thing for her to make even more new friends. We learned a few days before class that Katie's best friend in pre-school is also in the cheerleader class. So for Katie right now life is good.


Katie and her Friend........
Showing off her new moves........

Learning good stretching exercises......
With all of the adjustments Katie has been going through I think this will be something fun for her. The class goes until January so it will be awhile before I have new photos of her as a cheerleader.

TTFN

not what I was hoping for..............

Today started out bad because we woke up late..........Phil was to be leaving at 6am and I should have been showered and waking the kids for school. Instead, Phil woke up at 6am woke me up. I jumped in the shower and her comes Jack. Miraculously enough at 7:15 I was out the door to drop Katie off at school, Jack off to pre-school, stop back home to get Maddie a good breakfast and off to the pulmonologist.

It is almost 75 miles round trip to see this doctor so I wanted to make sure half way there she wouldn't start screaming for food. I was really hoping for good news today. The breathing treatments are the last part of Maddie's recovery. She still gets one treatment a day. We had an x-ray done Tuesday so the doctor could see if there was a change.

As the doctor talked my heart sank. In six months, there was no additional recovery to Maddie's diaphragm paralysis, in a month she has gained no weight and she could be on the breathing treatments for years. After I stopped sulking I started thinking like a responsible parent and asking questions. So yes all of these things are not good news but here is a little bit more information.

Her diaphragm could still recover over time...if it doesn't she could still have a pretty normal life the way it is. She would be better off if it recovered more. She could change her breathing treatments to an inhaler. It would be more convenient for us to change to an inhaler. I decided I would wait til she was older before we made that decision. There is also a slim chance we would take her off the treatments altogether to see if she could handle it. My thinking was maybe after cold and flu season.

Has not gained even an ounce. That was definitely not what I was looking for today but she has not lost any weight. In the last two weeks Maddie has gone to ALL table food and all drinks out of a sippy cup. No more bottles. She also is sleeping on a cot at daycare. State law requires all children a year and older to sleep on a cot. For those of you who have been around Maddie she doesn't walk ........SHE RUNS everywhere. She is afraid she will miss something when Jack and Katie are around and she hates not being in the same room with me. So she is eating just not enough to gain weight only enough to maintain her weight.

This is okay for now. In about two weeks I am hoping she will show signs of increased eating and slowly the weight will stick around. She eats well at daycare and most days pretty good at home. I just need to sit down and develop a high calorie diet for her she will like. I still meet with the nutritionist once a month and she and I will be speaking soon.

When the doctor said it might be years before she has another chest x-ray, I wanted to cry. It means my child is not getting completely well and may not ever get completely well. Yes she could still have a normal life but she is not completely well. I just felt defeated. I had so much hope going into this appointment today and I left totally deflated and angry. To see Maddie you would have not idea the journey we have walked, some days crawled and other days sat motionless. It is just so frustrating to hear she has no change.

The drive to the other children's hospital today, there is no direct highway route. We travel a two lane back road through the country. I actually love this drive and is usually pretty peaceful in the morning. On the way home, my mind was racing and I was angry. I had become so comfortable with seeing her and feeling like normal in a way I feel like I have let her down. So over the next few days I will create a new game plan and become very defensive about her again and the people she is around. It is the only way I can protect her and help her. I hate being knocked down we didn't deserve it.

Hoping for better days.....................TTFN