Our Letters of Hope

In a matter of minutes your life can be changed forever......to never go back to where it once was and quickly thrust down an unknown path. Your life as you once knew it comes to a screeching halt as the rest of the world carries on around you. Hospitals become your new home.....clinic visits your new vacation destination.....nurses and doctors your new family......tube feedings, administering medications, pulse oximeters.......things that most would find terrifying soon become a way of life for you.

We never realize living in our perfect little world with our blinders on that there are bigger things out there....things that can bring us to our knees in an instant.....removing the things that have kept us from seeing the true meaning of LIFE......and what it REALLY means to live.

Logan’s Journey...........

On November 3rd, 2006 we celebrated the birth of our second child, Logan, a healthy baby boy. We were very thrilled with his arrival and so excited to take him home to meet his big brother, Wyatt. He was such a good baby and ate much better than his older brother did at his age. He slept very well and was just very content. We couldn’t have asked for a more perfect baby. It was a wonderful time for us and we quickly adjusted to being a happy family of four. Little did we know at the time, Logan was hiding a life threatening condition.

November 17th, 2006.... a date that will forever remain to me as the day our old life stopped and our new one began.

Our day started off a very happy one. Wyatt was three and a half at the time and he was so excited to be getting dressed up for pictures with his new baby brother, Logan. My mom met me at our pediatrician’s office so she could help me during Logan’s two week well baby check up. We were laughing and having a great time discussing how cute the boys were going to look in their pictures later. We had no idea that our day of fun was going to come to a very abrupt end.

I truly believe that people are brought into our life for a reason and God knew what he was doing that day by giving us Dr. Daws for Logan’s check up. He began checking Logan over…..something he did and then did over again really rattled my nerves. He was really checking out Logan’s heart and being a mom for the second time I knew that his obsession with my little guy’s ticker was not just the normal routine check. Dr. Daws looked up at me and said that he heard a heart murmur and needed to send me down the hall for further testing. Honestly I was speechless…….I just stared at him and painfully said okay.
I walked out into the waiting room to get my mom and I told her what was going on……she was in just as much shock as I was in. There weren’t too many words said between the two of us during Logan’s EKG and chest x-ray. We just put on happy faces for Wyatt and tried to wrap our brains around how bad a murmur really was.

I don’t think that either one of us were prepared for what was coming next. We waited in the waiting room for what seemed like an eternity…..never a good sign…..and when the clinic closed over the lunch hour they called me back. I had my mom stay in the waiting room with Wyatt because I was nervous about what they were going to tell me. I took Logan back and rounded the corner to find Dr. Daws and Dr. McCabe at the end of the hallway looking at x-rays. They had very serious and sad looks on their faces which caused my heart to start racing because I knew immediately something was seriously wrong. They told me that Logan’s chest x-ray showed he had a very large hole in his heart…..what worried them the most was that he was showing signs of heart failure. They told me that babies like Logan can be born healthy and then over the course of the next six weeks will began to rapidly deteriorate……by the six week mark they are in serious heart failure. I froze in complete fear…..unable to move…..unable to respond…..unable to feel anything. I was emotionless standing there staring at the x-rays trying to understand how this was happening to me. We had no idea that anything was wrong with our baby…he ate well…in fact he ate better than his big brother did at that age…..he was perfect….never cried…..but he did sleep a lot…………….my mind started racing…...maybe all those times when I felt that tiny tug at my heart that something wasn’t quite right…….I should’ve listened……how could I not know something was so terribly wrong……..how could the doctors have missed something like this……..anger….….sadness………fear……..and an immense amount of pain……...everything all at once.

Both doctors left me alone while Dr. Daws made phone calls to The University of Iowa Children’s Hospital to make an appointment with a pediatric cardiologist. A few minutes later Dr. McCabe walked back over and showed me on Logan’s X-rays what they were looking at. This time I broke down……I began sobbing and shaking in disbelief that this was even happening as I looked down at my prefect baby. Maggie, one of the peds nurses, put her arm around me and walked me to the next room so I could sit down. She asked if I wanted her to get my mom and all I could do was cry. Seconds later my mom came walking down the hallway with Wyatt. The look on her face….I will never forget….. when she saw how upset I was…….the fear in her eyes as she realized too that something was very wrong. Poor Wyatt….god bless his little heart….he got upset when he saw me crying and he asked Dr. Daws what he did to his mommy. All Dr. Daws could do was put his head down…...he softly told Wyatt that he told his mommy something that made her very sad. Dr. Daws then tried his best to calm our fears and reassured us that this was not a death sentence for Logan. He informed us that in three days, on Monday, we were to be at the University of Iowa for an appointment with Dr. Atkins for further testing. We were scared to death to be taking Logan home….but Dr. Daws reassured us that if he was in any immediate danger we would be riding in the helicopter that very moment on our way to Iowa City. He was to be on call that weekend and we were to call him if we had any questions or concerns.

Mom and I walked out of the office and hugged each other a million times through our tears. I think she was worried about me driving the kids home so she followed me….she really didn’t want me being alone at the time either. I made the very difficult call to Ryan, who was at work at the time, and it was hard trying to explain to him through my tears that something was wrong with Logan. He dropped everything and left work immediately to be home with us. My grandparents came over to be with us too that afternoon. It was a very long and emotional filled few days for us. Every time I looked at Logan I cried. It was just very, very hard.

Three days later on Monday we headed to Iowa City. My mom came along with us so we were not going through it alone. They sent us for testing….x-rays…..EKG…..and an echo. When we walked into the echo room we were greeted by Roger. He was very nice and so sweet to Logan. He took his time doing Logan’s echo and was very patient when Logan got a little fussy. He stopped the echo and had me feed him…..saying that he would give us a moment and he would be back…..we had little clue at the time that he was doing more than giving us a break. He returned quite a while later with another echo guy…we didn’t know then that he was Dr. Ben Renking (the top fetal/baby echo guy and a cardiologist)…..again it is good that we knew very little then. He did his own echo and they discussed things very quietly while they were checking everything out. After they were finished they sent us up to the clinic to wait for our cardiologist. They put us in a room and moments later Dr. Atkins and one of her fellows came in holding two pictures. One was of a normal heart……..the other was Logan’s heart. The difference was so shocking that we instantly burst into tears. It was very hard to see the picture of Logan’s heart……it was just very unreal and so hard to believe. We found out that not only did Logan have a hole in his heart, also known as a Ventricular Septal Defect (VSD), but he had four other defects as well: Transposition of the Great Arteries, Double Outlet Right Ventricle, Sub Valvular and Valvular Pulmonary Stenosis and a Right Aortic Arch. Dr. Atkins then went through a list of questions for me to answer about my pregnancy….things I did…smoke-NO……drink alcohol-NO……any medications or illegal drugs-NO……..during all of the questioning I started getting very upset…….I did EVRYTHING right….I ate the right things……I didn’t drink caffeine……I took my vitamins everyday…..then it turned to…….did I cause this?……what did I do to make this happen?…..the guilt and blame started to take over at that point…….I was so upset and angry at myself…..then I thought.... I had two ultrasounds during my pregnancy why didn’t somebody see this…….it was awful the things racing through my mind. Dr. Atkins was very kind and she was quick to point out to me the facts…..ANYONE can have a child with CHD…..they do not know why it happens…..it could be environmental…..could be genetic….it could be anything but that I SHOULD NOT blame myself for this at all. It was not our fault that it happened and that we shouldn’t blame any of the docs for this. Both ultrasounds that I had were at 8 weeks (too soon to see heart defects) and the day before I went into labor (they just checked head placement). So it was missed both times….nobody’s fault. The peds doc that checked Logan out after he was born had no idea anything was wrong because one of the connections that was supposed to close after his birth remained open allowing him to look nice and pink with no heart murmur. His murmur likely developed after his first week of life. Now that the blame game had passed…..we had a few facts…..it was time for the hard truth. They informed us that they needed to take Logan from us immediately to perform a Balloon Atrial Septostomy in their cath lab to save his life. One of the hardest things I have ever had to do in my life was to sign a consent form giving them permission to save my baby’s life……it sets in that this is really happening. They allowed us a few minutes to spend with him before they took him away. I was so emotional rocking him in the chair……praying for God to guide him safely through and bring him back to us. The nurses took him out of my arms and promised they’d bring him right back to me. The next few hours we wandered up and down the hospital hallways….sat down and cried…..made tearful phone calls to family and friends sharing the heart breaking news……and prayed!

When the procedure was over they had us meet them up in the Neonatal Intensive Care Unit. By that time all of our family had arrived at the hospital to be there with us. It was hard…very, very hard. They made us leave that night and it was so difficult not being able to take Logan home. Ryan’s dad tried taking us out to eat and I could barely eat…all I could think about was Logan and how helpless I felt.

We stayed in the Ronald McDonald house that night and I don’t think that either one of us were able to sleep much . We arrived at the hospital and began our education…..all about Logan’s condition….his cares…..CPR…heart failure signs….and also what his future would hold…..many, many, many surgeries.
I think in a way it was good that we were so naïve and clueless about what the next six months were going to be like for us.

We took Logan home three days later on November 22nd.

Two weeks later on December 11th, Logan underwent his first open heart surgery, the BT Shunt. We had our eyes opened up that day to what it really means to be the parent of a CHD child. No one can ever fully prepare you for the exact moment you see your baby for the first time after heart surgery. The many, many, many machines pumping life saving medications into his body…..the ventilator keeping him breathing…the constant alarms beeping…..the surgical scar running down his chest…the chest tubes draining out of his chest…..and how very tiny he looked laying in the bed all by himself…..unable to open his eyes and look at me. Your heart just aches so badly the first time you see them.

The next 31 days were a rollercoaster ride filled with surgical complications that included breathing tube issues, focal seizures and bloody stools. There was a point where Ryan and I didn’t think we were ever going to be taking Logan home. It was definitely a very dark time for us.

It was difficult living out of the hospital for so long…..away from our family…..and our other son, Wyatt. We had Wyatt come to visit and stay with us as much as possible but it was hard. Every time we had to say goodbye to him it was very emotional…..he would scream and cry out to us as if we were abandoning him. I hated that I had to pry his little fingers off of me so I could put him in the truck with our family to take him back home. The guilt I felt as we sent Wyatt back home so I could return to care for Logan in the PICU was overwhelming at times.....I struggled with the fact that I had to choose between two children I loved.....and I prayed that someday Wyatt would forgive me.

Life in the Pediatric Intensive Care Unit makes you have a new appreciation for life and how very precious it really is. We watched as a little boy two rooms down from us had heart surgery in his room as the doctors tried everything to save him…..sadly his family had to say goodbye to him later that night. That was very hard to think about what that family was going through.

Life is precious……nothing to ever be taken for granted….or treated anything less than what it really is…..a gift.

After 31 days we were able to take Logan home. It was a rough transition period at first with the round the clock tube feedings, vomiting and many other issues we faced. We spent a lot of time driving back and forth to our pediatrician’s office to have Dr. Daws look Logan over when we felt things weren’t quite right.
I had to quit my job to become Logan’s full time nurse. His cares were so overwhelming that he could not go to daycare and the slightest illness for him would be deadly so we had to avoid germs completely. It was hard going from a two income family to a one income family overnight. We were not prepared but had the loving support of our family, friends and community to help us.

The next five months we tried to get our life back to as normal as we could but it was difficult. Logan still wasn’t eating very well from his bottle so we still were required to do tube feedings along with using a feeding pump continuously overnight to make sure he was getting enough calories. We struggled with feelings of isolation since we couldn’t go anywhere nor have many visitors because of the risk to Logan if he were exposed to any germs. I also suffered from feeling overwhelmed being Logan’s primary care giver. It was not an easy job but somehow together we pulled each other through that time.

In June of 2007 when Logan was seven months old it was time for him to have a feeding tube placed in his stomach since he was not progressing away from his ng feeding tube and onto the bottle. We were still relying heavily on his feeding tube for the majority of his feedings. It was hard coming to that decision but we knew we had to do whatever was required to care for Logan. His new feeding tube quickly became such a blessing for us. His face could be free from tape and tubes, we didn’t have to stick an ng tube down his nose anymore for his feedings and he could finally look like a normal happy little boy.

That summer, life for us was finally getting easier. We were confident in our ability to care for Logan, he was stable and finally starting to eat better by mouth. We watched as Logan learned to sit up, stand with support and eventually crawl. It was such a joy for all of us, including Wyatt, to be around Logan. Wyatt loved that for the very first time he could play with his baby brother. They quickly developed an unbreakable bond that melted my heart each time I watched them smile at each other.

In August of 2007 after one of our cardiology visits we received the big phone call....it was time for Logan’s next surgery. We knew it was time but weren’t quite ready to hand over our baby again. All we could think about was the last time....31 days filled with complications, worry and sadness. We just couldn’t bare the thought of putting Logan and our family through that again so soon. With the support and encouragement of the Heart Moms I had gotten to know along with our family we braced ourselves for Logan to undergo his complete repair.

On September 5th, 2007, at ten months old, Logan underwent his complete repair, Rastelli procedure with RV – PA reconstruction using a Contegra Conduit. It was a long procedure full of many surprises and a bit of difficulty for his surgeons. After six hours it was finished. When Dr. Davis, Logan’s surgeon came in to give us the good news I cried and wanted to hug him for delivering our precious boy safely through surgery. When we went back to see Logan I was so shocked to see how pink he was. We never realized how very blue our little guy was before he had his repair. I instantly turned around and thanked Dr. Davis a million times for giving us our pink baby. I was just so overwhelmed with joy....in the tiny miracle before us....the gift of life.

The Contegra Conduit that replaced Logan’s Pulmonary Artery in his surgery will not grow with him so we were told it will have to be continuously replaced until he is done growing.

The second surgery, while still hard to see, was easier to cope with compared to the first one. We had been through it before so we knew what to expect this time post op. Plus, we had gained a new sense of hope and faith. We trusted his team of surgeons, doctors and nurses this time...because they had become a big part of our extended heart family...no longer strangers to us in an unknown place.
He only required a two and a half week stay that time despite discovering Logan was hiding another little secret. A cyst was discovered behind his vocal chords after they extubated him and he was having difficulty breathing on his own. It was caused from a previous intubation injury and we were very lucky we never had any breathing problems at home before this. The cyst was removed and he has been doing well ever since.

We had to return to the hospital three days after his discharge when Logan developed an infection. After three days on IV antibiotics we were able to return home. We were finally able to take Logan outside our house to celebrate his very first Halloween and first birthday. It was a time full of many celebrations and giving thanks to the many blessings we had been given.

Life quickly returned to normal for us and we loved the idea of no surgeries for four years...no hospital stays....a chance to finally breathe and relax.

Six months later we were quickly shocked back to the reality of being a heart family and painfully learning that it is never over for these kids. After a routine cardiology appointment we learned there was a problem with the conduit they used when they repaired Logan’s heart....a very BIG problem. On the x-rays it showed that his conduit had grown in size and appeared to be much larger than it was after surgery. Logan underwent a CT scan a few days later and we were shocked to learn that one of his defects that we thought had been repaired, pulmonary stenosis, had not been completely removed and had come back with a vengeance. It was blocking portions of his conduit and was causing it to bulge from the dangerously high pressures in his heart. We were told he would need to undergo a dangerous cath procedure to try and attempt to balloon and possibly stint the narrowing to buy Logan more time for surgery. The reason it was so dangerous was the location where they needed to perform the balloon angioplasty and possible stint. It was right where his conduit had been stitched to his heart and there was a huge risk it could tear causing bleeding and leading to emergency surgery. We were completely terrified by this news...not only was his conduit failing but he was at risk of needing emergency surgery.

A month later we were back to have the cath procedure done. They had called in the entire cardiology and surgical staff for the procedure so everyone was there if needed. It was a very long wait for us until we heard news that the procedure was a success. We were relieved that the new cath guy, Dr. Divekar, had worked his magic and spared Logan a need for immediate surgical intervention. They were able to balloon one area and get the high pressures in his heart down a little. Not as much as they had hoped but enough to buy him some time. We learned that the other area that was narrowed could not be fixed in the lab and would require surgery to repair it. They were hoping they had bought us a few months and hopefully a year before he would need another surgery to replace the damaged conduit and try to remove more of his stenosis.

It has been an up and down time since then and we are approaching the one year mark since he had his angioplasty. We have had some very good follow up appointments and then we have had the ones that kick us in the gut nearly scaring us to death. His condition has been stabilized by the increase in the heart medications he has been on since his first open heart surgery. We have watched him grow into a vibrant little two year old boy....so full of happiness...silliness and all of the wonderment that comes with a child.
We see our cardiologist every other month. Logan undergoes many tests so they can monitor his condition and keep a very watchful eye on how he is doing until it is time for surgery.

There is no written plan for Logan and no set number on the amount of surgeries or procedures he might need. There is only a hope that they can limit the number of surgeries he has and give him the best quality of life possible outside the hospital.

Finding hope.........

Being told that there is something wrong with your child is probably one of the toughest things to hear as a parent. You experience so many feelings at one time and you become quickly overwhelmed. In the beginning you experience shock that this is happening, anger that no one knew your child was sick, helplessness as you realize everything is out of your control and you are quickly paralyzed by the intense fear that your child’s life is now in the hands of strangers. You find yourself driven upon your knees many times begging for your child’s life.

Everything around you suffers in the beginning. You watch as friendships come closer and others fade away. Your marriage takes a hit as you both try and learn to come together while you deal with your grief on many different levels. The financial hardships on top of caring for a sick child can add even more stress. Family either supports and rallies around you or makes things more difficult as they too struggle to understand why. Your other children deal with their own grief over having a sick sibling that monopolizes the majority of their parents’ time. They suffer from the anxiety that a doctor’s visit can rip their entire family away from them for weeks and sometimes months on end. There are many hardships that can break you if you let them but if given the chance can strengthen the important things that really matter.

Some where along the way after you have grieved the loss of the perfect, healthy child you dreamed of having and the life you once knew....you find HOPE. Hope that although your new journey is full of many uncertainties your ability to trust and believe will guide you along the way. You find joy in the simple things and learn to cherish each and every single moment you are given.....with no regrets.

As parents of a child with a Congenital Heart Defect we are trained to care for our child, watch for signs of trouble and learn more about medical terminology than we ever thought we’d know. However, the most important thing we learn is not from the doctors, nurses, surgeons or anything we can find in a medical text book...it is the ability to live with our hearts wide open. To let the bad that has happened be turned into something good by spreading HOPE to others.

I have met so many other heart families through our support group and online through the Care Pages community. No matter how many states away we are we are able to uplift, support and encourage each other. We are a tight knit group....a sisterhood of heart mommies fighting every day to make a difference for our children. We inspire each other to keep moving forward...trudging through the CHD battlefield as we band together to get through one more day.

We refuse to give up on the fact that awareness for congenital heart defects is lacking...in fact there is nothing out there. There weren’t any pamphlets at my OB’s office warning me this could happen to anyone....nothing to report the fact it is the nations number one birth defect...the number one killer of children. More shocking is the lack in funding for the research needed. Pediatric Cancer receives five times more funding than Congenital Heart Defects yet CHD’s kill nearly twice as many children as all forms of pediatric cancer combined. SHOCKING and there is little being done to get awareness out there.
Probably one of the most disturbing things for me is the fact that many OB offices, including the one I went to, don’t perform routine 20 week ultrasounds, to try and catch these defects. Many babies are born with heart defects unnoticed at birth. Sadly for some it is not caught in time and they pass away at home due to heart failure. All of this could be prevented by performing a routine ultrasound during pregnancy at around 20 weeks gestation....yet many offices don’t believe in doing them.

It can be very frustrating as a parent reading the statistics knowing that the only reason we are reading them is because this happened to our family and we searched for some sort of answers as to why. We didn’t happen to catch an article on Congenital Heart Defects in a magazine....we didn’t catch a spot in our nightly news broadcast.....nothing.....as if the voices of the over 2 million families affected by CHD’s have been silenced. Does anyone even care?

Maybe it simply goes unnoticed because our kids don’t wear their sickness on the outside. They seem happy adorably perfect children on the outside so who would ever guess the secret they hide within.....covered by scar tissue, metal surgical wire....and stitched together like an intricate puzzle. The mysteries that their tiny heart holds know one can quite understand unless they have walked in a heart family’s shoes.

Through the times of frustration we are finding hope that someone is listening and they have taken notice. Legislation is in the works with the Congenital Heart Futures Act. Our job is to keep making sure they don’t stop hearing our voice.....our stories....our wish for things to change....a difference by saving a child’s life...sparing a new family the pain of watching their child fight every day with all they have just to be normal.

Godspeed........

Godspeed means a wish for a prosperous journey, success, and good fortune. Isn’t that something we wish for all our children? Whether they are healthy, sick, little, grown and living five states away from us that is our one and only wish, right? It reminds me of the early days of our journey being the parents of a child with Congenital Heart Defects. All of those first updates on Logan’s care page, more like the first years worth, were all medical. It is so funny and sad at times to read through them as if a doctor had written them about a patient......very little emotion, thoughts or feelings......just a lot about medications, vomiting, feeding difficulties, procedures, surgeries and the endless doctor appointments. Of course why would there be anything else...we were living purely in survival mode that first year. Logan was sick for such a long time that our entire focus was on taking care of him....we didn’t have time for anything else....or to really reflect on the pain we were feeling.....just trying to keep our heads above the water.
Looking back on it now I believe that is how we made it this far into our journey....by learning to survive, adapt, cope and heal our own broken hearts. While I know the road we’re on will not always be the easiest to travel, I can look back and remind myself how very far we have come already. We survived it.....Logan survived it.....trusting that there will always be a light showing us the way even when at times we are struggling to find it.

For the first time in two years I finally feel that it’s okay to DREAM of a prosperous journey for Logan...being able to look ahead without fearing the “what ifs” are going to stop me. I think I have reached that point of allowing myself to feel okay with the future even if I can’t see the road ahead for us. I know there will always be obstacles to conquer and scary curves ahead where we will need to buckle in and hang on.....but I am okay with that. I’m not saying I won’t still have those moments where I am completely terrified and fearful but I am choosing to rely on my FAITH that “through Him all things are possible”.

We have to have hopes and dreams. If not then what are we really “living” for? What pushes us to keep going if we believe tomorrow may not be here? While I still believe that we have to live for today we still need to remember there is always HOPE for tomorrow.

Giving thanks........

We give thanks for all of the things that are possible because of Logan and the gift he gave when he chose us to be his family. He continues to add joy to our family every day.

He pushes all of us to be better each day....to continue giving unselfishly of ourselves to help others and inspiring them to continue paying it forward.....making a difference.....being the miracle that creates change.
I will forever hold so many doctors and nurses very close to my heart…..after all they have become a big part of our extended heart family…..our miracle workers…..and the angels among us.

“We can all be angels to one another. We can choose to obey the still small stirring within, the little whisper that says, Go. Ask. Reach out. Be an answer to some one's plea. You have a part to play. Have faith. We can decide to risk that He is indeed there, watching, caring, cherishing us as we love and accept love. The world will be a better place for it. And wherever they are, the angels will dance."
- Joan Wester Anderson

Logan you are our precious miracle and we will never stop thanking God……for you…….for his many angels watching over you……and the wonderful blessings he has brought into our lives because of you.

Stefenie Jacks – Logan’s mommy