CHD Week - Day Three - Siblings

When I found out in March of 2005 that the child I was carrying was going to be a boy, I cried. There was absolutely nothing I wanted more than to have a boy. I already had a 15 month old girl; my life was complete. I realize I am just a little bit biased, but they were so stinking cute too.

Kaitlynn at just a hours old.

Jackson at just a few hours old.

Kaitlynn is so cute. I love her blue eyes.



One of my favorite pictures of Jackson.

I just wanted to live a simple life of raising my two children and give them the best life possible. Three years later everything I wanted for my simple life changed, FOREVER. We found out we were having a third baby. Our third child, Madelynn came with surprises of her own. She was diagnosed with a CHD at 10 weeks of age.

The day I found out, I received a phone call from a doctor and Kaitlynn and Jackson were in the room and saw me crying. They came running over too me and asked why I was crying. Trying to be present for them I had to think fast on my feet. I told them that Madelynn's heart was not shaped like theirs and we needed to take her to a special doctor to fix it. I remember taking my two index fingers and tracing a heart over Jackson's chest. He then gave me a hug. One I will remember forever.

CHD Siblings have a hard road to tow. Madelynn's CHD Siblings are older than her so they have some memories of the chaos. Kaitlynn's fifth birthday was basically cancelled because the day before Madelynn was admitted back into the hospital due to complications after surgery. Jackson didn't believe me she was still alive. 21 days in the hospital to a 3 year old was forever. I can't tell you how many times I had to cancel plans and Kaitlynn and Jackson would wail, "But Mommy you promised!!" Words even today make me want to hide in the corner and cry.

Kaitlynn and Jackson have memories that Madelynn will never have. One of the most treasured bittersweet memories is fishing with Uncle Jason. They were old enough to remember catching their first fish spending a few days with him and Uncle Jon. Madelynn met Uncle Jason before he died but she did not have these kinds of memories. She barely remembers Uncle Jason other than what we tell her so she always knows who he is.



Daddy and Jackson holding his first fish.

Kaitlynn and Uncle Jason holding her first fish.

As a parent your hope is to always give your children all the same opportunities. As a CHD Parent it is 200 times more stressful and difficult trying to balance doctor appointments, specialist visits, tests here and there for your heart warrior and heart healthy kindergartener and preschooler day to day living. There were so many days by the time I would go to bed I just wanted to cry. I had always felt I had failed my CHD Siblings again. IT SUCKED!!

Looking back at all the tears shed, failures experienced and pure exhaustion felt we came out better people. I have learned patience. I have learned failing is okay. I have learned just because daddy does it different, doesn't mean it is wrong. I have learned to stop and savor the moments, however small they may be.

Jackson was three when Madelynn was born and had her open heart surgery. He was in preschool at the time. When it came time for Madelynn to join him I could not afford it. I had to withdraw him and have someone babysit he and his sister while I worked. Jackson did not graduate from preschool. As his mother, EPIC FAIL!! He was the only one not to have that experience. It makes me sad even today.

But something amazing came from what Jackson lost. He didn't have the social experience of preschool or the graduation like all the other 5 year olds. What he gained was a gentle soul. Spending everyday with Madelynn after surgery and learning about her needs he wanted to help her all the time. But this carried over in everything he did. If there was a smaller student in the class he wanted to help them. If someone didn't understand the math assignment he is there to teach it not just give the answer. If I allowed him he would give the shirt off his back everyday.

What would have happened to his gentle soul had he had all the same experiences as his sisters?? As I cried that I failed him.....I later learned that God's plan was much greater. Jackson's loss turned into one of his greatest gifts.

As crazy as he makes me, the joy is always so much greater.



This is the Opie Taylor smile he acquired from his daddy.

My sweet boy and his gentle soul.

 

His first soccer season.

I wish I could say that Kaitlynn had the same type of "AHA" Moment that I did with Jackson. For her this journey has been one more of anger and lots of yelling. Even though Kaitlynn is the oldest she never experienced being an only child. Before her first birthday I found out that we were having Jackson. She has never known life without Jackson.

I love those blue eyes and freckles.

Because of my high stress level I was more often than not very short fused. One day as Kaitlynn and I were arguing about something she looked at me and asked, "Mommy I know you are mad at me but do you still love me??"

She is the reason I wanted to have more kids.

It stopped me dead in my tracks.

My response......."I love you every second, of every minute of every day, no matter what".

I didn't know it at the time but that is what she needed to hear. She has stood back and been short changed so many times. She had to hear "No",  "I'm sorry I forgot", "Can we do it tomorrow". For the longest time I had to stop saying' "I promise". I could no longer promise anything. That realization was very depressing.

Love her....

However, one day it was not turning out to be a very good one, I had to tell the kids I had to cancel our plans and do it another day. I was waiting to hear Kaitlynn get upset with me. Instead she walked up to me, hugged me and said, "That's okay, you still love us right".

Every second of every minute of every day........

I love to watch her play soccer.

Being a sibling of a CHD Warrior is a fight of a different kind. It is hard on everyone involved. The only advice I can give to both parents and siblings is never give up. Never stop fighting. I had to work just as hard for my heart healthy kids as I did for my CHD Warrior. Yes some of it is guilt for all the additional time my heart warrior consumed. But I also had to do it because my heart healthy children deserved everything I had to give as well. Even on the days I felt like I had nothing left to give.

I love you to the moon and back Kaitlynn and Jackson.

TTFN~ 

CHD Week - Day Two - Surgery

As I told you in my previous post we found out about 3 pm on a Wednesday that Madelynn was born, 10 weeks prior, a CHD Warrior. At about 8 am the next morning, we handed Madelynn over to the surgeon and his team of miracle workers. It would be TEN hours before we would see her again.

During these ten hours she would be prepped for surgery, they would create what would become her zipper, break her breast bone, stop her heart, hook her up to the heart lung machine, remove part of her Aorta, splice her Aorta back together, close the other hole in her heart, restart her heart, wire her breast bone together and zip her back up. Piece of cake right.....

A few hours after surgery.

 

While these excruciating hours passed, I was not alone. I was surrounding by my husband (Phil), his mom, his sister, Jacquie, and my parents. We used the hours to research Madelynn's CHD on the computer. I know, I know this is not a recommended practice. However, I felt like Dorothy in the Wizard of Oz. I had just been dropped in an unfamiliar territory via a Hurricane. I needed to take this situation by the horns and get control and quickly. I felt so helpless.

The surgical team left regular messages for us they had started, they had opened her up and there were no surprises. This was a huge concern of the surgeon. They can run test over test over test but until they open the warrior up and physically see what condition the heart is truly in, everything is just a best estimate. We were warned they might have to leave her chest open in case she can't handle the shock of being repaired.

Then we received the message the repair is complete, they are closing her up and the surgeon will come and talk to us. He told us they were able to close her up and he was very pleased with both the repair of her Aorta and closing the other hole in her heart. The next 24-48 hours would be crucial.

While Madelynn was still in the Critical Care of the CVICU.

 

When Madelynn was diagnosed she had almost no blood flow to her lower half of her body. They had no idea how long her body had been that way so her body was now in shock adjusting to the proper blood flow. She remained in the critical care of the CVICU for 5 days. This area of the hospital had a nurse in her room 24/7/365. It was pretty intimidating. Madelynn had a rough 5 days, thinking she had overcome it, she was moved to a standard CVICU room (one nurse for every two patients)

While she was being moved from one room to the other she suffered a collapsed lung and paralysis in her diaphragm. There was also something else wrong and after a 48 hour culture she was diagnosed with strep-pneumonia. She was very sick, she did not want to eat and when she did she would throw it back up.

The day before her lung collapsed; she was so sick.

 

Twenty one days after being admitted to Levine Children's Hospital, Madelynn was released. She was in rough shape. She was anemic, weak, barely eating but her body was accepting the repair and corrected blood flow. Because Madelynn had been living at home for 10 weeks and had already developed a routine at home, the doctor felt she would do better in an environment she was more familiar with so we were released.

Her freedom was short lived. Because of extreme weight loss and eating issues we were back in the hospital three different times over a five week period before she finally turned a corner.

If there was anything I wanted someone to gain from Madelynn's experience it would be there is more to being a heart warrior then open heart surgery. So many of our CHD kids have eating issues, they can be smaller and/or skinner than most kids. Being in an out of the hospital takes a toll on the whole family. Trying to keep up when your school aged child is having surgery can be extremely overwhelming.

Once the crisis mode is under control, families need help finding their new normal. Sometimes families need to be reminded they are not alone. We were so lucky to find Camp LUCK (Lucky Unlimited Cardiac Kids), www.campluck.com . It is so much more than a camp. We found families like us. They spent the long nights in the hospital, they experienced the two steps forward and five steps backward and they can encourage you to never stop fighting.

Happy CHD week!!

TTFN~

CHD Week - Day One - Diagnosis

Because I would be over 35 when Madelynn was born, I had several ultrasounds throughout my pregnancy. However, her Congenital Heart Defect would not be discovered until she was 8 weeks old. She developed a cold and the coughing was so bad I felt she needed to see a doctor on a Sunday.

 

 

When I took her to the Urgent Care, the doctor could not find anything wrong with her. Then he heard her cough. The doctor chose to do a chest xray. He told us her lungs were fine but her heart was very boot shaped. Madelynn needed to see a pediatric cardiologist right away. Because she had no symptoms for what would be her eventual diagnosis, we did not see the pediatric cardiologist until two weeks later.

 

 

Our appointment was for 2 pm the last Wednesday in October. After some very lengthy tests, we were told Madelynn had a CHD, Coarctation of the Aorta. This is a very common CHD and traditionally is not repaired with OHS. However, Madelynn's Aorta was very badly damaged and it went straight up like a tree; not curved behind the heart. The only way to repair it and the hole in her heart was open heart surgery (OHS) the very next morning. 

 

My husband and I learned about Congenital Heart Defects less 24 before our daughter had Open Heart Surgery. She was only 10 weeks old. There was no medical reason for her to be alive. The Urgent Care Doctor and the Cardiology Team at Levine Children's Hospital saved her life. We will eternally be grateful.

 

Happy CHD Week!!

 

TTFN~

Celebrating small victories when nothing is guaranteed........

Entering a blog post today was not part of the plan. However, most of today was not part of the plan. It's Monday.....which means school, work and one of my busiest days of the week at work. I took my shower, woke the kids up, picked out Madi's clothes all the usual things.

I went downstairs to start the kids breakfast turned on the dining room light and my whole day changed. Madi's white of her eye was almost red and her eyelashes were all crusty....PINK EYE...YUCK!! Lucky for us our doctor is open 7-7 Monday-Friday. I called them and they could see us right at 8:00 am....LUCKY BREAK....Nope.....all part of God's plan for us today.

So I dropped the older two off at school and headed to the appointment. We checked in and waited to be called. Then the thing I dread the most weight check. Since her Open-Heart Surgery (OHS) in 2008 Madi has struggled with eating and weight gain. She was almost labeled "Failure to Thrive". Sometimes one of the worst side effects to your child having OHS is eating and weight gain. For a while Madi didn't even register on the growth chart because she was so under weight.

She has to sit at the front of the bus in a special seat because she weighs less than 40 lbs. Back in November I took her for a weight check to see if she could ride in a booster seat to Florida. NOPE!! she still weighed less than 40 lbs.

Then today happened. We walk in she hands me her coat and shoes and jumps on the scale. 40.2 lbs!!! I was speechless. I was waiting for someone to tell me it was wrong. But it wasn't. When it finally hit me we had reached a huge milestone I had Madi get back on the scale so I could take a picture and text it to Daddy.

Although I am excited we reached a part of our journey I have been longing for just like her CHD nothing is guaranteed. I have lived the heart break of two steps forward and five steps back. When they moved Madi out of a critical care room and into a regular CVICU room her lung collapsed. We went to see the lung doctor and I thought she was doing great and he needed to give her an immediate treatment because she had an infection in her lungs. She started to get regular UTI's they thought her urine was travelling back to her kidneys. More tests, more unknowns, more stress.

I have begged Madi to eat, bartered with her, yelled at her, told her if she didn't eat the dinner provided she could not have anything else. NONE OF THIS WORKS!! Today was a big day and I was thrilled to tears she finally made 40.2 lbs. But what you don't know what you can't possibly imagine is that she ate 3/4 of a large banana, ONE rigatoni noodle, a granola bar and a yogurt today, not for lack of trying.

All this means is we wipe the slate clean, she will probably be starving in the morning and she will probably eat scrabbled eggs, a piece of peanut butter toast and some milk for breakfast. Everyday I have to let go of the failure of yesterday and try something new and inviting the next day. The good thing is she likes the healthy stuff. I just have to pick the healthiest things I know she will eat with the right kind of calories in it.

Because of this up and down journey I can not put Madi in a booster seat yet. I have to wait a few weeks take her back to the doctor, just for a weight check, if she is over 40 lbs again then I can buy her a booster seat. Nothing with a CHD journey is ever guaranteed. Madi's corrected heart surgery is doing beautifully but what about the residual effects that stem from it. When Madi celebrates her 7th birthday I will be lucky if she weighs 41 lbs. Her average weight gain is 3 lbs a year. At this rate when she is 14 she will be lucky to weigh 62 lbs. According to NC law I will have a teenager who legally still has to be in a booster seat.

CHD's happen to real people every day. Just because the heart is repaired doesn't mean the fight is over. There is so much that is still unknown about CHD's. Spreading awareness, raising funds so the research can be done, figuring out a way that CHD babies live past their first birthday, why do so many CHD babies have difficulty with eating and gaining weight. These are real issues that I and so many other families face everyday. We need real answers.

Madelynn is 1 in 100.

TTFN~

I will not apologize......

Today starts Congenital Heart Defect Awareness Month. If you have ever met me or know anything about my family, this is something I am very passionate about.

I will not apologize if your facebook news feed, twitter, or instagram accounts are flooded with facts, statistics or heart wrenching photos about heart warriors and their fight to live. They did not ask to be born this way, nor did their parents do anything wrong to make them this way. It is the gift God gave them. These child are born with special challenges and the parents entrusted to make sure the warriors have every chance possible are amazing.

Did you know????

-Congenital heart defects (CHD's) are the #1 birth defect in the US and every other country

-Nearly 1 in every 100 babies are born with a CHD

-Congenital heart defects are the #1 cause of birth defect related deaths

-Congenital heart defects are the leading cause of all infant deaths in the United States

-Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood

-Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood

-More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.

-There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.

-In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD

This last statistic is the most shocking to me. It makes me shake my head every time I read it. When I think of our journey and how far we have come, kids like Madelynn are worth the funding so that other families never have to make this journey. Below is a video I made to celebrate Madelynn's 3rd Heart Anniversary.

If I have learned anything it is to celebrate EVERY small victory. Happy Heart Month!! #1in100

Happy Birthday Justine!!

Happy Birthday Justine!!

I love that I can come see you for vacation.

Even more I love that as we were born a week
apart, our daughters were born less than a
month apart and can't wait to see each other.
I wonder where they get that from??

Thank you for your beautiful gift of friendship. It is truly a gift!!

Love ya!
Chelsea

Finally....Things I have learned in 2014......

I have been trying to post this for a few days now. I keep doing other things and remembering I wanted to get this post done while I am drive down the road or the middle of the grocery store. Recently, I decided to finish the master closest. I have been scraping popcorn ceiling, sanding mudding, more sanding. I even got hooked on a stupid (not really) FB game, Trivia Crack (Thanks Ted). I have been painting the ceiling with several coats of paint to get it done. While I was waiting for the paint to dry, I finally remembered to finish this post.

In 2014 I learned many things........

Best Friends are Forever - I knew this already but the friends that mean the most to me reminded me how much they truly care about and love me.

Some people were never my friend - One of my biggest faults is that I always want to see the good in people and they use it to betray me.

Love is Forever - On the days I want to kill my children for not listening, breaking something or hurting my feelings; I still love them. Even in my angriest moment, I can still look them in the face and say, "I love you every second of every minute of every day."

For me.....Marriage is Forever - Some days I do not like Phil because we do not agree or we make each other angry. But I always without a doubt I LOVE him. I promised him forever.

Family is what you make it - I am lucky to have both of my parents still with me. I never want to take that for granted. But some people aren't so lucky. Whether it be those with deceased parents, fathers who have no relationship with their children, sharing your children with childless couples, or piece mealing a family together with those that work at it or want it.....it is ALL family.

Sometimes you have to draw a line in the sand.....and choose not to cross it - Standing your ground, if it is what you truly believe, regardless if someone else thinks it is wrong, you should not waiver. This has been a very hard choice to make. Because I always want to see the best in people, I have been burned by it and will no longer cross the line.

Soccer Moms are the coolest.....We turn into blithering idiots because we want our children to have amazing success. As the moms we see the ability in our players. Victory or defeat our child shares this as a team. One exceptional athlete does not make the team. But I also know if I called these Moms in a crisis they would be their in a minute or the first to congratulate at a success of any kind.

Do Everything Joyfully - On the days you don't want to go to work, run that errand you promised, help the friend in need on your busiest day, whatever life throws at you do it ALL JOYFULLY!! Other people see you and you are a witness 24/7/365. I once was standing in line at the post office to mail a package. The person in front of me just needed a stamp and it was a very long line. I pulled a stamp out of my purse and gave it to her. She tried to pay me for it. I told her to pay it forward to someone else. She told me I made her day. I wonder how she paid it forward to someone else??

Social Media isn't all it is cracked up to be - I have a very good friend who I talk to almost everyday. She texts me in the morning to see how the family is. She sends me stupid jokes that make me laugh out loud in my office alone. However, we share not a single social media account together. We are not FB friends, she is not on my instagram or my twitter or pintrest. According to social media, we do not know each other, but I truly treasure her friendship and would walk through fire to keep it.

God is in control - No matter what I try to control or think this is the plan full steam ahead. God always has His plan and I need to remember to be obedient and follow it.

Good Luck in 2015..... Back to the next coat of paint and then a little Trivia Crack LOL!!

TTFN~