Heart of a Fighter

February is American Heart Month and for most of us this brings to mind adults with cardiovascular disease, but there is another group that is often completely overlooked.

They are the children whose lives have been shattered by congenital heart disease. They cannot run and play like other kids. Their parents live in constant fear of them having cardiac arrest, stroke or worse. They have experienced open heart surgeries, heart catheters, MRIs, X-Rays, echocardiograms, transplants, physical therapy, and more IVs and blood draws than they can count. They are children whose childhood has been stolen and have been made wise well beyond their years.

"Congenital Heart Defect" -- three words that I had probably heard in passing but never paid much attention to until March 13, 2009. That morning I was headed to the hospital for a scheduled C-Section and everything went smoothly until my son was born. He immediately had problems breathing and was placed on oxygen and transferred to St. John's in Joplin. I was able to briefly touch his hand before he left and then did not see him again for two days. My plans of snuggling and enjoying the first hours of my baby's life flew out the window.

Then we were told something that I can still hear as clearly as the day it was said: "We think there's something wrong with his heart."

At St. John's he was diagnosed with a congenital heart defect called transposition of the great arteries and he was transferred by jet to Children's Mercy Hospital in Kansas City. We had chosen the name Kaden Shiloh for him, Kaden means "fighter" and Shiloh means "place of peace." The names and their meanings became even more special to us when we realized what he was facing.

Transposition of the great arteries occurs during early pregnancy, around eight weeks, while the heart is forming. The aorta and pulmonary artery are switched. Instead of the blood circulating and mixing like it is supposed to, the blood coming from the body to the heart never receives oxygen and the oxygen rich blood coming from the lungs never goes out to the body.

Kaden was very lucky in that he had an additional defect that created a hole between the chambers in his heart and allowed for some mixing of blood. When he was less than 24 hours old he had a balloon atrial septostomy which created a larger hole in his heart and allowed us some more time before he had to have surgery.

My husband Steve followed Kaden to Joplin and then to Kansas City, while I stayed behind to recover. Two days later I arrived in Kansas City and was able to hold my baby for the first time. He looked so perfect. If it wasn't for the wires and IV line, I wouldn't have been able to tell there was anything wrong with him. We were able to spend the next week and half rocking and holding him as much as we wanted. We spent a lot of time talking to doctors and nurses and searching the Internet for information. The surgery that Kaden needed was called an arterial switch and had a 96 percent success rate.

When he was 12 days old, we kissed our son goodbye and watched as he was wheeled to the operating room. His surgery was supposed to take 4-6 hours and we could do nothing but wait. After four hours, a nurse came out to tell us that Kaden's heart condition was more complicated than they had realized and that the surgeon didn't think he was going to be able to repair his heart. She told us that Kaden's heart would not be able to sustain life.

The next several hours were a blur while we waited for more news. Finally, the nurse came back to tell us that the surgeon had been able to do "something" and she wasn't even sure what it was, but that he thought he had been able to fix Kaden's heart. After an 11-hour surgery Kaden's heart was again beating on its own and he was taken to the Pediatric Intensive Care Unit. We later learned that Kaden's surgeon, Dr. James O'Brien, never once left the operating room during those 11 hours and we are so thankful that he wasn't willing to give up on our son.

Kaden recovers from the lifesaving surgery. Kaden means "fighter."

Later that night as we sat in Kaden's room his heart stopped beating. The doctor rushed in and began performing CPR and a chaplain came to pray for Kaden. After several minutes Kaden's heart was again beating on its own and we knew we had witnessed Kaden's second miracle of the day.

The next morning Kaden began improving and every day after that he was a little better until two weeks later when we were able to take him home.

Today, Kaden amazes us at how "normal" he is. He still has pulmonary stenosis and an enlarged aortic root which his cardiologist continues to monitor. Otherwise, he is a very healthy and happy little boy.

He loves running and playing with balls and we hope that he will be able to play sports someday. He has a long white scar running down his chest and every time we see it we are reminded of what a miracle he is.

According to the CDC, Congenital Heart Defects are the most common types of birth defects affecting nearly 40,000 infants each year in the United States. Some CHDs are preventable but most are not. Many of these children never get a chance to live a normal life, if they get to live at all.

The biggest way we can help these children is by raising awareness so that additional funding can be obtained.

New research needs to be done to find ways to help those affected by CHD's and maybe someday even find a way to prevent them.

-Rachel       

Pictures of Kaden in Pediatric ICU

Rough Night...

I'm back in KC and went to see Kaden this morning. He had a rough night. His blood pressure dropped and his pulse stopped and they had to do CPR on him at 1:30 in the morning.


Kaden is moving his toes which I don't know is good or bad. He's suppose to be in "la la land" so he won't feel the pain.

He has been moved to the Pediatric Intensive Care Unit and there he has two nurses with him around the clock. There is also a waiting room that family can sleep in if they want to stay overnight. Recliners that lay flat kinda thing. But at least you are close to the children.

I will be spending the day watching Mark and Koda at Ronald McDonald House

Rachel has a post below mine as a update which will give more medical info so check that also.

Update from Rachel 3/26/09

Yesterday we went over to the hospital at about 5:45 am so we could spend some time with Kaden before his surgery. He went into surgery at 7:15 and one of the nurses came out and gave us updates about once an hour. Everything started out well but about 11:00 the nurse came out and said that they had tried to take Kaden off the bypass machine and it had not gone well. They opened his heart back up and found that there was an additional abnormality in Kaden's heart in that one of the vessels had grown down into the heart muscle itself and he wasnt sure he would be able to do anything about it which meant that his heart wouldn't be able to sustain life. An hour later she came and told us that the surgeon was still looking around to see what if anything he would be able to do. Another hour after that and she told us that the doctor had been able to do something(not sure what) and they had taken Kaden off the bypass machine and were watching to see how he was doing. Another hour and she told us that things were looking much better but that his heartrate was too high so they were keeping him in OR and waiting to see what happens. They had been about 95% sure that they were going to have to put him on an ECMO machine overnight basically to let his heart rest for awhile. But they were worried about it causing too much pressure on the heart where the doctor had put the sutures so they really didn't want to do that. He started doing alot better so they decided not to use the ECMO machine. Basically he spent 11 hours in the OR until they decided it was safe to move him to PICU. We finally got to see him around 8 and he has lots of tubes and things hooked up to him which we expected but you're never really prepared to see something like that. We stayed for about an hour and then ran over and took showers and came back. A little after midnight his blood pressure dropped and he had no pulse so the doctor there did CPR and they called the surgeon to come back in and there were basically about 15 people running around in his room doing stuff. After a couple of minutes his pulse came back and his blood pressure started to come back up so they called the surgeon back and told him not to come yet. He was doing ok after that and we went out about 2:30 and slept in the waiting room for four hours. This morning they said he is still doing ok and the surgeon has checked on him and multiple doctors so we are just waiting to see how it goes. Thanks for all your prayers. I make no guarantee of any of the medical facts in this email since I had way too much information thrown at me yesterday and too little sleep to process any of it.

Rachel

Doctors are "cautiously optimistic" .....

Rachel says the doctors are "cautiously optimistic" about Kaden's condition. The nurses told Jim he is doing excellent. So don't know which way to go except he is not still out of the wood totally. He will be kept on life support for a while because of blood clotting issues. Rachel also says there is still a couple more hours of surgery to go. Keep praying.

Apparently, the first time they opened the aorta and attached the blood vessels did not work so they reopened the aorta and tried the procedure again. This time blood is flowing through the vessels and the doctor says the vessels will continue to grow as the baby grows.

Keep him in your prayers as he still has a rapid heartbeat and other issues to deal with , which I am not sure what they are.

I believe God Himself intervened on behalf of that little child's life. Your prayers have made a difference and all the family thank you on behalf of Kaden.

Kaden's Surgery

We are so thankful for the doctors and nurses who spent 11 to 13 hours in surgery. The doctor never left his room the whole time I am told. May God bless you all.

7:00 P.M. Finally out of surgery...
Rachel called and said Kaden is out of surgery and that the next 12 - 24 hours will be crucial. He is being moved to the Pediatric Intensive Care unit in about 45 minutes. He will not be put on life support because of something to do with not wanting him to bleed. He is still on a ventillator.They did reconstructive coronary artery surgery.His heart is still beating too fast and has other issues Rachel was not sure about what they were.Please keep all of them in your prayers. Steve and Rachel are very tired as they had to be at the hospital at 6:00 and surgery started at 7:00 A.M. It's been a long day for everyone involved.Again, thank you our friends for your continued support. We appreciate your prayers.Again, the next few days are crucial in Kaden's life so remember him in your prayers.

2:00 P.M. Kaden is doing better. Oxygenated blood is going to the heart.
Kaden still has a rapid heart beat but the Dr. is encouraged because oxygenated blood is getting to the heart. Apparently they had to open the aorta back up a second time and try the vessel thing again.


1:00 P.M. The vessels were smaller than the Dr. had anticipated and they do not know if they can fix Kaden's heart. We will not give up hope!

11:30 A.M. The vessels are separated and the surgeon is getting ready to put the Aorta back together.

10:15 A.M. Surgeon is in the middle of the procedure. Working on switching the vessels.

9:30 A.M. Everything is going well and The By-pass has begun...

9:00 A.M. All the lines and tubes are in and surgery has been started. Looking to the "Great Physician" to guide the hands of the doctors and nurses

Pictures of Kaden-March 24, 2009

Update from Rachel...

We met with the surgeon today and he explained Kaden's surgery to us. Kaden will be headed into the OR at 7 a.m. tomorrow. The surgeon said it would take somewhere around 4-6 hours depending on how long it takes the anesthesiologist to get the iv's and lines in. After surgery he will be moved to PICU, and they will keep him asleep for several days and on a breathing tube until the swelling in his chest goes down. After it goes down they will close his chest up and let him start to wake up. After he is stable he will get his own room or be moved back to NICU until he goes home. If everything goes well he will be released from the hospital about 10 days after surgery. There is about a 93% success rate with this surgery and Kaden should have no restrictions on playing sports or anything like that after he gets older.

Rachel

Aunt Stephanie

Steve's sister Stephanie came to see Kaden today. Doesn't she look like the proud Aunt?

He also can wear his own clothes now.

Sleeping peacefully in his little blue sleeper. And he is in his own little crib now.

Look how he grabs your hand. When he was in Nevada, he wrapped his little fingers around mine and he has a good grip. Look how long his little fingers are.

Good night, little one. Sweet dreams!

Pictures from Rachel

Rachel emailed me some pictures to add to the blog. Here's dad holding him.
This is my favorite. They're having a "father-son" talk. He's probably apologizing for Nana singing to him. The Bible says "make a joyful noise." Didn't say it had to sound great!

Aaw, the burp position. We've all been a little timid about holding him like this because of the IV coming out of his head.

This is the sweetest little "teddy bear". It has no stuffing and when I was there they laid it over his little head to make it dark for him. He'll come home wanting to always sleep with something over his head. Koda likes that too.

Isn't he darling. I miss getting my daily little talk and kissing that sweet little face.

Is it just me or are these pacifiers huge?

A better view of his special "teddy bear." Some mothers make something out of their clothing so the baby gets their own mother's scent on something to keep next to them. Especially if they have mothers that can't be with them. Thought that was a good idea.

See the size of the nipple on that pacifier? Wide eyed isn't he? Probably wondering what happened to his Nana! Oh, and Rachel said he gets to wear his own clothes now. And they brought him his own little crib too.

Surgery Date Rescheduled!

Rachel called this morning and said the surgery date has been rescheduled for this coming WEDNESDAY. Kinda disappointing, but we have to remember that each day they wait Kaden will be that much stronger. And babies that are more critical than him need to come first.

Pray for Kaden to continue to gain strength, for the jaundice to subside and also that Steve and Rachel be able to "roll with the flow" in the coming days as things continue to change daily.

We find that the days begin to all flow together and you do not know what day of the week it is or what is happening in the world around you. You kinda get "tunnel vision" and I am not sure how healthy that is too. I suggested Steve and Rachel get away from the hospital scene a little bit, maybe go to Crown Center and walk around since it is only a block from them.

Update on the boys at home. Koda was puking last night and ran a fever in the middle of the night. I have given him Children's Pain Reliever and also am starting him on his allergy medicine. I have heard there is a lot of flu like stuff going around here at home, but we haven't seen anyone so maybe he picked up something in the city.

Mark is running the world from wherever he is. Those of you who know Mark know what I am talking about.

Keep us all in your prayers.

Day 5 in the life of Kaden Shiloh

I snapped these pictures as I was rocking him tonight. I told his momma we could put a bow in his hair because he was pretty enough to be a girl. Don't think his daddy would go for it.


I taught him some new songs tonight. He likes them too!
Here's Kaden in his little bassinet in the little cubicle # 25 where he lives.

Here's some of his monitors and stuff.

Here's some more monitors. Aren't we thankful for all this stuff!!

They decorate the walls to look like a little nursery. This is to the side of his bed. How thankful I am to see all these little blinking lights and monitors and stuff that he is surrounded by and I am thankful to be living in this day and age.

Good night, baby Kaden and sleep tight....we love you dearly....

Ronald McDonald House

After Kaden was transferred to Children's Mercy Hospital in K.C. arrangements were made for us to stay at the Ronald McDonald House located one block up from where Kaden would be staying. I cannot say enough about the hospitality shown us as a family by the Ronald McDonald House here in K.C. next to Children's Mercy Hospital. Besides the convenience of being able to walk down the street anytime we wanted to see baby Kaden, there is the added benefits of living in a place that is "just like home" except nicer.


We are staying in a room that sleeps six on sleep number beds. The room is still large enough to accommodate all our luggage and we have our own bathroom. I believe there is something like 19 sleeping rooms in the house we are staying in.


Every night supper is carried in and served by different church groups, families and civic organizations. The first night we were here supper was brisket, baked chicken, homemade macaroni and cheese , fruit salad, pie and cookies. It is so wonderful to get out of the hospital and come home to a wonderful meal prepared by people with a heart for those in situations just like ours. Usually a family with a child in a sick condition and in a hospital far from home. The kitchen is open 24 hours a day with two large refrigerators stocked with food as well as a stocked pantry for our use. The pop machines only cost 25 cents if you so choose to use them.


There is a full basement with a large screen TV and a playroom for the kids next to it. And adjacent to that is a laundry room with several washer and dryers for our convenience. Soap and laundry needs are furnished. In fact everything you could possibly need is furnished in these houses including bedding, towels and food.


I would encourage you to give generously to the Ronald McDonald House. Little boxes can be seen in the McDonald's all over the country. I can vouch that it is a worthwhile organization and the money will go to help those just like our family who found themselves needing a place to stay so we could be close to our little one while he is in the hospital. And if there is a Ronald McDonald House located close to the city in which you live, please volunteer there or even donate items that can be used there. How I wish I could do that but none exists close to where I live.


If you are like me you don't really think about places like Children's Mercy Hospital and Ronald McDonald Houses until one day you wake up and find yourself in situations like ours. I am sorry I haven't been involved up to this point, but from now on I will support them through giving of my money, through donating pantry supplies, by encouraging you all to support them also and in any other ways that I can. Please join me in getting the word out about this wonderful place to stay when illness strikes. Below are some pictures so you can see where we will be staying for the next two weeks to two months depending on how Kaden does with his heart surgery.

Here's big brothers Mark and Koda beside Ronald McDonald. Having a baby brother in the hospital affects the big brothers also.


Located just south of the Children's Mercy Hospital. It's a very large place!
Here's Steve going for the brisket. Food is wonderful!
The kitchen even had high chairs lined up for the little ones and was decorated with place mats made by children and then laminated. Good project for church groups and Sunday schools.

The basement was a wonderful place to relax and watch TV while the kids play in the room next to you.

Every toy imaginable seemed to be in this play room. And of course there was the pool table .

I certainly appreciated the laundry facilities.

Outdoors was a fenced in area with a sandbox, swing, birdhouses, play house, BBQ grill and wonderful patio.

There was the cutest little reading room on second floor with children's books and these rocking chairs. They have thought of everything to make our stay as comfortable as possible for all members of the family.
And this Ronald McDonald House even had a baby grand piano and a fish aquarium.

Thank you Ronald McDonald House. We appreciate your hospitality!