Blue Roses

Blue Roses......

Why do I always have to be the one that starts to do laundry and there's no detergent? I guess it was time for me to do my "Dollar Store" run, which included light bulbs, paper towels, trash bags and Clorox. So off I go.

I scurried around the store, gathered up my goodies, and headed for the checkout counter only to be blocked in the narrow aisle by a young man that appeared to be about sixteen-year old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here." It was obvious now, he was mentally challenged, and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Hal."

"Hal like Halloween?" he asked.

"Yes," I answered. "How old are you Denny?

"How old am I now Mommy?" he asked his mother as she slowly came over from the next aisle. "You're fifteen years old Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him. I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit.

I told her that there are plenty of red, yellow and pink roses in God's garden, however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a "Blue Rose" and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are you?"

Without thinking I said, "Oh, I'm probably just a daffodil or maybe even a dandelion, but I sure love living in God's garden".

Pastor Hal Steenson

This real life story took place July 12, 2006.

Please, the next time you see a BLUE ROSE don't turn your head and walk off, take the time to smile and say Hello. Because by the grace of GOD this mother could be you. This could be your child, grandchild, niece, nephew. What a difference a moment can mean to that person or their family.

A bittersweet moment

Five and a half weeks from being admitted at the hospital, Aiden was going to be released! What a trying time it was for both.

Aiden is the type of kid, who when he is finished with something, he no longer wants it. Chest tubes, central lines, feeding tubes. He didn't care, he wanted them out, so he would remove them when he deemed himself ready. There was no discussing it with his team of doctors.

When you are in a place like a hospital for so long, you can't help to become friends with other families who are also there. We bacame friends with so many families the two times we have been in OKC. Our first time there, when Aiden was born, we became friends with other "premie" families. And when one family leaves, tears are shed, but friendships are formed that will last forever. You cried with them, you laughed with them. Our second trip there, there were more families. Shanan and her daughters Taylor, Paris, and Tiffany. Taylor has leukemia. Michelle and Trenton. Trenton has a brain tumor. Michelle and Trenton went home first. Then Aiden and I were released.

The day we were to leave, Shanan helped me take things to my truck. When it came time to say our good-byes, there were tears in both of our eyes. Each of our kids became the other's kid. I would check in on Taylor and she would check in on Aiden. We still keep in touch weekly to see how the kids are doing.

If It Can, It Will

The time came to finally give Aiden a bottle of something that would actually fill his little tummy and had some flavour to it. I was sitting in a rocking chair holding Aiden and we had fixed him a bottle of diluted formula.
His nurse Brenda walked in and looked at one of the drain tubes that Aiden still had in him. The fluid in the drain tube had turned a white milky colour. She immediately said that Aiden had to stop feeding. She left the room and returned momentarily. All the bottles of formula and water were taken out of the room.

A short time later, one of Aiden's other nurses mentioned "chylothorax" and that the pediatrician on duty would be in to tell me about this. Well, not wanting to wait until who knows when, I got the laptop out and looked it up myself.

Chylothorax is where long chain fats are "leaked" into the body via the thoracic duct. It can be caused by leukemia or by a trauma to the chest. Most cases are caused by leukemia, while only 25% are caused by surgery. Of course, Aiden happened to be the 1 in 4 heart surgeries where chylothorax develops...

What are the treatments for chylothorax? First, Aiden was given a medication to see if that would help clear up the buildup. Then, he was given a special formula via a feeding tube. That didn't help either. Then we tried another formula that smells worse than a skunk. Aiden couldn't keep that formula down long enough to even see if it would help. Finally, the leaking subsided and Aiden was put back on his regular formula again. And the daily chest xrays started to show improvement until the chylothorax was just a small, tiny amount that would be absorbed into his body.

Back in my arms

Two weeks, three hours after I walked Aiden down through the doors of the operating room I held my child again for the first time. The best way I can describe the feeling is like holding him for the first time ever, all over again. I never wanted to let him go. Only this time, he was much heavier and looked more like a healthy baby should.

The Greatest Surgeon

On Monday February 18th, my mentor, Wendy came to the hospital to sit and wait with me while final ECMO removal was attepmted. She and her daughter Hannah had brought a Boyd's bear, a book for Aiden "God Made You Little One" and a card with Hannah's favorite scripture. The card said that Aiden was in the Greatest Surgeon's care and that the person giving the card was talking to him on a daily basis to heal Aiden.
When the surgical team came to Aiden's room, I was told to go wait in the waiting room. Wendy and I sat there for what seemed forever!! I kept going back and forth between the waiting room and the PICU nurses' station. I was scared and I didn't want to not know what was happening in that room.
About an hour and a half later, I walked into the PICU area and Dr. Pastuszko walked out of Aiden's room. He said that he had turned down the ECMO and things went really well. Aiden had maintained his heart rate and pressures. Then he turned the machine down a little more and the same results. So, the ECMO was turned completely off. Aiden had maintained all his stats for more than 30 minutes without assistance.
I went back into the waiting room to tell Wendy the news. Together we walked into Aiden's room and immediately the presence of the Greatest Surgeon was in the room. Aiden's vitals were PERFECT!

Now for what I wasn't told. I wasn't told that Aiden was only given a 3% chance to even come off the ECMO or to survive. I wasn't told that while Dr. Pastuszko was lowering the ECMO machine, Dr. Ward was on the phone with the hospital in St. Louis putting Aiden on the heart transplant list.

I want to thank EVERYONE for their prayers. Someone has a direct connection to HIM.

Talking to God

Saturday, February 17th, was the first attempt to take Aiden off of ECMO. That morning, the surgical team came into Aiden's PICU room. The machine was turned down a little to see if Aiden's heart would catch the slack from the machine. Still, his right ventricle would not do what it was supposed to do.
I was called into an empty room where Dr. Pastuszko and I could talk about the options. Dr. Pastuszko decided to let Aiden's heart rest over the weekend. On Monday, the machines would be turned down again to see if Aiden's heart would work on it's own. If it would, great. If not, the first procedure to shunt off the right ventricle would be done.
I asked about a heart transplant and if Aiden would be a candidate. Surprisingly, the dr said it would be. Aiden would be transported to the heart transplant hospital in St. Louis. The waiting list for a heart that small is about 6 months time. However, the shunting of the right ventricle would buy Aiden at least 6 months time and the second surgery to close off the ventricle would not need to be done.
On Sunday, things still weren't looking all that well for Aiden. Chris and his daughter, Chelsea, came to OKC to visit myself and Aiden. It was hard for me to explain what all the machines (the artificial heart, the artificial lungs, the artificial kidneys, and the breathing machine). These were the machines doing all the things that Aiden's little body should have been doing on its own. We had gone to a restaurant to eat a late lunch. When I got back to the hospital, there were new doctors crammed into his little room. They were ordering a lot of blood to be pumped into Aiden's tiny little body. For the first time, Aiden looked like a healthy baby. His colour was perfect and he was FAT! Granted all the "fat" was actually fluid products being pumped in.
Now, I will be the first person to admit that I was not a very religious person before Aiden was born. However I did ask everyone I knew to pray that Aiden would come out of this and be healthy. How could I pray to God that my baby be ok without it sounding selfish? I did though, go to the chapel in the hospital and have a heart-to-heart with God. I reminded him that he put Aiden on the Earth for a reason. I didn't know what that reason was, but He could not take Aiden away. Aiden still had lots of people to meet and teach this world something.

Surgery Day

The morning of surgery started REALLY early. Of course, I didn't get much sleep and Aiden was up at 6am waiting on the customary bottle of breakfast. Since surgery was less than 2 hours away, we cuddled.

About 7:30 that morning, transport came up to retrieve Aiden. I asked if I could walk him down to the OR. That was the longest walk ever! I could only imagine how other moms felt taking their children down. I was silently crying. This could be the last time I held my child and saw his big goofy smile. I didn't want that walk to end. We got on a set of elevators that had two sets of doors. One that opened to the front and into the hall that led the way out of the hospital. The second set of doors opened to the private halls that led to the surgical unit. I didn't like those doors.

Once we got to the pre-op waiting room, I couldn't help but smile. I knew Aiden was in good hands as the walls were covered in Snoopy and Snoopy wouldn't let anything happen to my Aiden.

The anesthesiologist came out to talk to me for a moment, then the surgical nurse came out of those big doors. She wanted to take Aiden out of my arms and he would disappear behind those doors! I didn't want to let him go. I tried to tell myself that he really didn't need the surgery, he was just fine. God made him this way and that was how he was supposed to be. Finally, reason took hold and I hugged and kissed Aiden and told him I would see him in a few hours. I also told him I loved him more than anything.

The nurse said that she would call every 90 minutes and update me on the surgery. I told her I wanted to know everything but one thing. I didn't want to know when Aiden was on bypass. I did NOT want to know when a machine was the only thing keeping my baby alive.

The first call came at 9am. Surgery had began.

At 10:30am the second call came. Everything looked great.

At noon, the third call came. Surgery was still going on.

At 1:30pm, another call. Another echo was being done.

WAIT RIGHT THERE!!! Surgery was supposed to be over with by noon. That is what the surgeon said.

At 4pm, I had not seen my son, received another call, or talked to either of the doctors that were in the OR. I went to a set of doors labled "Surgical Recovery" and opened them. "I either want to see my child or see Dr. Ward or Pastuszko. Something is WRONG!"

A few moments later the nurse calls and said that Dr. Ward was on his way out to the small, private waiting room. Dr Ward sat down in a chair. He said that the two original repairs to the AVSD and the ToF went as planned and everything looked good. Another echo was done and two residual VSDs were seen. So Aiden was placed back on bypass. The first hole was repaired, but due to smallness of Aiden's right ventricle, Aiden's heart was so swollen that Dr Pastuszko could not repair the second hole. The decision was made to let the hole repair itself. When the attempt to take Aiden off of bypass the second time was made, the ventricle had forgotten what it was supposed to do and the heart was not working. Aiden would go to PICU on a portable bypass machine.

I had researched the hypoplastic right/left heart syndrome and I knew that a series of surgeries could be done to bypass the defective ventricle. So I asked about it. Dr. Ward said that children with Down syndrome do not like the surgery and only 1 in 4 survive the surgeries.
Dr. Pastuszko came in about an hour later and we talked about what would be done within the next few days. Aiden would be left on the ECMO to allow for his heart to rest and to let the swelling reside. He said that Aiden was on his way to the PICU and that I could wait there until the nurses called.

When I walked into the PICU room, my baby had more wires, tubes and machines. It was standing room only.

His nurses explained the machines to me and said that at all times, Aiden would have two nurses.

The only thing I could do was cry.

Welcome to Holland

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Meeting the Surgical Team

On February 14th, I was loading my truck to take Aiden to OKC. Chris calls while I am packing last minute things and wants to stop by to say goodbye. He comes over and kisses Aiden bye and says he will see him in a week. As I am loading the last bag into the truck, it starts snowing. Oh great, just my luck. Before we leave I had to run by the tag office to pick up my PikePass and the snow was starting to stick and accumulate. It was cold and I so didn't need Aiden to get sick the day before his surgery. By the time we made it to OKC, the snow had stopped and the roads were clear. I parked between the building that houses the dr's offices and the children's hospital. I take Aiden to the cardiologist office first, where I fed him. Then we went to xray. After xrays, he had an EKG and an echo. When Dr Ward comes in to show me the xray and to talk about the echo, he mentioned the AVSD, the small right ventricle, and something called
Tetralogy of Fallot. I guess I looked at him like he had a third head because he asked if I had ever heard the term. I had heard of it, just not in relation to Aiden. He explained what it was and the surgery to correct it. After meeting with Dr Ward, Aiden and I were escorted to his room where we would wait the night out. Later that evening, Dr Pastuszko came in and introduced himself. I have a friend, Julie, and Dr Pastuszko did her daughter Sarah's heart surgery. Julie had glowing reviews about him. He said that Aiden's surgery would be a simple 3 hour procedure and Aiden should go home in a week. Transport would come get Aiden at 7:3o the following morning and Aiden should be in PICU by noon.

Cardiac Cath Lab

January 4th, 2007. Aiden is going in for his first "real" procedure. After midnight, he isn't allowed to eat anything. This is a child who wakes up at 6 am every morning and expects the bottle to be ready 15 seconds later. How on earth was he supposed to understand that Mommy could not feed him when he demanded to be fed?
We went to the hospital, and into the surgical waiting area. Aiden and I were taken into a little pre-op room. Of course, everything is running behind schedule. Aiden's cath was to be at 9 am. It was nearly 1pm before Dr. Kimberling's assistant came to retrieve us and take us to the 3rd floor. The cath is supposed to last 1.5 hours and I am to wait in this little room down the hall.
45 minutes later, Dr. Kimberling comes in and my heart sinks to the pit of my stomach. He's WAY to early to be finished already!! He says that the cath is done and Aiden is on his way up to the PICU on the 5th floor. Everything went well, he would give the results to Dr. Lundt (the cardiologist) and Dr. Ranne (the surgeon). I can go wait in the PICU waiting room until called.
When I finally get to go back to Aiden's room, 3 nurses are in there trying to comfort him. I take him in my arms, sit in the rocking chair by his bed, and give him a bottle of Pedialyte.
The following week, all the doctors have a conference in which Aiden is discussed. Aiden had an appointment with Dr Lundt the next day. She says that Dr. Ranne had passed on doing Aiden's reparative surgery and that she would set the surgery up with Dr. Pastuszko at the OU Children's Hospital.
A week later, Dr Lundt calls and give me the number to Dr. Pastuszko's office and says to speak to Shelly to set up the date for Aiden's surgery. I call and set the date for February 4th - two weeks away.
On February 2, Shelly calls and asked if I would be willing to reschedule Aiden's surgery for the 7th. Another baby was born just the day before and needed to see the surgeon more than Aiden did. I agree. After all, I had already gotten to know my son and I thought that another mom needed the opportunity to know her child as well.
February 6th, rolls around and yet another call from Shelly. This time she wanted to reschedule Aiden's surgery for February 15th. I agreed once again.

My first scary night

October 23rd, 2006. I had just gotten Aiden to lay down and go to sleep when I decided to lay down myself. I was about to fall asleep when I heard a funny sound coming from Aiden's bed. It sounded like he was trying to take a deep breath and couldn't. I immediately called 911 and took Aiden downstairs to wait for the ambulance.
First the fire department shows up and I had to explain all of Aiden's issues. Then the paramedics arrive to evaluate Aiden. The fireman who was in my living room said that Aiden was going immediately to the hospital, the paramedics were not to evaluate Aiden.
I got in and sat on the gurney with Aiden, it was determined that since Aiden's cardiologist was associated with St. Francis, that is where we would go. Half way there, Aiden became non-responsive and the ride to the hospital became emergent. The lights and the sirens were blaring. Doctors were waiting in the trauma room for us. Aiden was diagnosed with congestive heart failure and was admitted.
The medication to control the CHF were started at this time. Aiden would get Lasix twice a day to help with the fluid around his heart. Apparently, Lasix is gross, because Aiden would spit it out and grin when he did it. After a month of this, I went to fill his prescripiton again and asked if the Lasix could be flavoured. Aiden seems to like his new banana flavoured Lasix and doesn't spit it out.
When Aiden was released from the hospital, his cardiologist wants to see us at least twice a month to monitor his heart. His reparative surgery would be "sooner rather than later".

Thank you Rebecca

I would like to thank Rebecca for taking time out of her busy life to make this beautiful creation. With everything going on in her life, she was generous enough to spend her Saturday morning and afternoon to bring her creations to Aiden's story.

Aiden's story

The middle of February 2006. I was late. I'm NEVER late!!! I called my best friend, Jason, and told him first. His reaction, "What are you going to do?" Uhhhhhhh...... I was very stressed at the time and wanted to blame it on stress. That weekend, Jason and I went out dancing at our favourite night club. As usual, I bought a Corona right off the bat. For some odd reason, it tasted NASTY!! It was rotten or the lime was bad. I could not take any more than three small sips out of it and threw it away.

I hesitated taking the test. I bought three EPTs. I figured if one came up positive, I had two more to rely on to be negative. All three came back positive... I called and made the appointment with my gyn, Teressa. The earliest she could get me in was the beginning of April. I went in for the appointment and into a cold, dark room with a computer in it. Teressa came in and squirted cold gel on my stomach. I wasn't supposed to be in this room. This room held bad memories for me; I had three previous miscarriages. I'm laying there on the table and she is doing the sonogram. She turns the volume up, and for the first time ever, I heard a heartbeat. My baby's heartbeat. I was in tears. She asked, "Are you ok?" and smiled. She sent me to the lab and then I returned to the exam room.

I am now entering unknown territory. Me? A mom? UNBELIEVABLE!!!! What was everyone going to say? My family was hesitant at first, due to the previous miscarries. My friends were shocked!! The father, well, let's just say he isn't in the picture...

I went for another check up in May. More bloodtests. Why do doctors insist on sticking me with a needle everytime I go in?

In June, I went in for another sonogram. This time to determine the gender of the baby. I really didn't want to know, but insurance says boys cost more than girls. I already had names for each picked out. Kaitlyn Ann-Marie for a girl and Aiden Wyatt for a boy. Right off the bat, the baby wasn't shy. When I went in to the exam room, Teressa said that she does what is known as a Quad screen for abnormalities and with my past history, she wanted me to have one. I trust her and so I agreed. After all, three previous miscarriages puts me in a high-risk category.

A week later, Teressa's nurse calls with the results. The tests came back positive for an increased risk of a neural tube defect. Teressa wanted to see me in the office, so I went a few days later. I am going to go see a perinatalogist for a level 2 ultrasound.

On July 19th, I went for the level 2. Well, good news there. No club foot and no neural tube defect. However (oh yeah!!! GREAT!) he did see a significant heart defect and a calcified placenta. I am being sent to a pediatric cardiologist for a in-utero echo cardiograph. A WHAT?? I didn't know that could be done. My crash course in medical school was about to begin.

Teressa calls me on July 21st. She wants me to come to the office that day for an amniocentesis. I get to the office at 3pm. I sat in the waiting room until 5pm. Teressa comes out herself to get me. We walked to the exam room. She apologized for keeping me waiting so long, but she wanted to have the office cleared out before she did the procedure. That way she could take her time. In the room, is an ultrasound machine and a table laid out with a bunch of things. I laid on the table and two nurses came in. One to hold the wand and the other to hold my hand. Teressa said that she wanted to rule out a few things. The results were going to be FISHed so that they would be back before my visit to the cardiologist.

I met the cardiologist, Dr. Kliewer, a week later. The fetal echo cardiograph (or EKG) showed that Aiden had an atrial ventricular canal defect - AVSD, transposition of the greater arteries, and hypo plastic right heart syndrome. My baby would need immediate heart surgery moments after he was born.

Teressa called me at 8:30am on the morning of July 29th. She asked if I knew what Trisomy 21 is. I tried to think back to my pregnancy book, I remembered seeing the term, but could not remember what it said. She said, "It's Down syndrome. Aiden has it." I sat there for a moment and finally said, "OK." Teressa reiterated what I said. I told her that I had an explanation for Aiden's heart condition. I wasn't worried about Down syndrome, it wasn't going to kill my baby. The heart conditions were life threatening. I had experience working with children who have Down syndrome. I have a "Downie".

I went in to Teressa's office two days later. She handed me a bunch of booklets. Information on Down syndrome, information on a school in town for special needs children, a calender of children in our area who have Down syndrome, and told me about DSAT (the local Down syndrome support group). She told me that she was a member of DSAT. Her daughter Cyenna also has Down syndrome. We discussed the surgery that Aiden would need following his birth. She said that the surgeon here had only done the surgery a few times. I asked her what she would do. As much as it hurt her that she would not be delivering my baby, it would be best for Aiden to be born at the high risk hospital in Oklahoma City. She would set the appointment with the perinatalogist there.

I had bi-weekly appointments with Teressa for non-stress tests and on the other weeks, I drove the 2 hours to the perinatologists office. On August 30, 2006, I went to OKC for a visit. The tech did another ultrasound and said that Dr. Mirabile would see me in just a few moments. He looked at the ultrasound.

He asked if I had anything to drink or eat that morning. I had not had anything since 8 that morning. He said, "Don't eat or drink anything else. You are having the baby today. There is no fluid. And the baby would not survive another 48 hours." WHAT!!?? I'm only 34 weeks! Would the baby survive? He said yes, the baby will survive birth. I was to go immediately to the OU Children's hospital, they were already expecting me. I was given a map to get there.

I don't remember driving to the hospital. But I remember calling my mom, my work, a few friends to pass on the information, Teressa, and Chris (my ex-boyfriend). Chris and I were talking when I found the hospital and a place to park.

The anesthesiology team came in to talk to me. Dr. Mirabile got to the hospital and started getting the OR ready. Aiden was going to be born by emergency c-section. My family showed up to the hospital also. I was taken to a big room where 30 doctors and nurses were waiting. I was given a spinal block so that I would not feel anything as I would be awake.

Aiden was born in the breech position at 8:51pm. He weighed 2 lbs, 13 oz and measured 15 inches long. He had apgars of 8/9. Someone held him up for me to see for a brief second. Then he was rushed into the room next to where I was. That is where the cardiac team was waiting.

I was back to my recovery room. 45 minutes later, a doctor comes into the room and introduces herself as Dr. Baker, the cardiologist. Tears are now in my eyes. She said that Aiden does indeed have AVSD and a small right ventricle, but he would not need emergency surgery that night. Later down the road, he would need surgery to correct the AVSD. About 15 minutes later, Aiden was brought to me in an incubator on his way to the NICU. I got to hold my baby for the first time 12 hours later. He was so small!! His head fit in the palm of my hand.

We spent 30 days in the NICU before Aiden was big enough and strong enough to come home.