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.
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.
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 two week well child 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 who was entertaining Wyatt 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 begin 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… …..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……..anger….….sadness………fear……..and an immense amount of pain……...everything all at once.
Everything quickly became a blur after that. They referred us to the University of Iowa Children’s Hospital to meet with a Pediatric Cardiologist, Dr. Diane Atkins. Three days later we arrived for testing….x-rays…..EKG…..and an echo. After the tests 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: D-Transposition of the Great Arteries, Double Outlet Right Ventricle, Sub Valvular and Valvular Pulmonary Stenosis and a Right Aortic Arch.
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.
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.
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 the next morning and began our education…..all about Logan’s condition….his cares…..CPR…heart failure signs….and also what his future would hold…..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.
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 and 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.
- 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 at the University of Iowa Children’s Hospital...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.
- 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.
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.
40,000 families this year will become the parents of a CHD child. They will feel alone, isolated and overwhelmed as they find themselves spending all of their time doing their own research.....exploring all options trying to save the life of their child. They are looking for answers and praying for hope.
The Children’s Heart Foundation gives families like ours hope. It is because of the research they fund that our children will no longer remain victims of their heart defects. They are solely committed to helping make the lives of these children better...giving them the chance they deserve to live a full and happy life.
Thank you for coming out today to show your support for their efforts and helping to give the CHD families of tomorrow hope.