Charlie

Playing Golf...

October, 2006

Enjoying the surf on vacation

Mmmmm...Yummy cake!

Relaxing in the back yard

What a charmer! (6 months)

Spring Fever 2005!

July 30, 2004: His big sister holds Charlie for the first time

August 6, 2004: 2 days after his first surgery

October 2004: Prince Charming works his magic!

December 2004: I've been a very good boy this year!

January 9, 2005: Two days post-op and smiling away.

January 30, 2005: 6 months old and getting stronger every day!

Charles Vincent (Charlie) was born on July 30, 2004 via a scheduled c-section. At 1:30 PM, the doctor announced “BOY,” and we were overwhelmed with joy. He was absolutely beautiful, began breastfeeding in the recovery room, and seemed perfectly healthy. So we were shocked when the pediatrician came into our room the following morning to tell us Charlie had a heart murmur that she felt needed to be examined more closely. He was immediately transferred to the hospital’s NICU. We were scared, but thought perhaps it wasn’t as serious as they thought. Our 2-1/2 year old daughter had been diagnosed with a heart murmur at 15 months of age and her pediatrician thought she had a mild heart defect. After an ultrasound, they discovered she was perfectly healthy. So when they told us Charlie had a murmur, we hoped it was a similar thing. However, a few hours later, we were told he would need to be transferred to Children’s Hospital for further tests. The doctors suspected something was seriously wrong with his heart. We had already called everyone to announce our “healthy” son. Now we had to call all the same people back and tell them our devastating news. Our dreams for Charlie had been shattered in just a few hours, and we had no idea what was really wrong with him. I waited at the hospital with a friend while Brad and his mother went with Charlie to Children’s. When he got back to the hospital to see me, we sat together and cried. There are no words to describe how we felt. We found out Charlie had a serious heart defect that would require surgery to treat and that his heart would never truly be “fixed.”

The next few days were a blur as we learned that Charlie had Hypoplastic Left Heart Syndrome (HLHS), meaning the left side of his heart, and especially his ventricle, did not form properly. After I was released from the hospital, and we could both be with him, we were given more information about Charlie’s defect and given our options by several cardiologists. Each doctor would draw the same pictures and say the same words, but none of it was sinking in. We were forced to learn a whole new vocabulary in just a matter of days, while dealing with the grief that came with finding out our child was not healthy. “Compassionate Care” was not an option for us; we knew we wanted to do something. A heart transplant did not seem like a good option, so we focused on the two surgical options: the traditional “Norwood” approach and a new “hybrid” method being utilized by a few surgeons, one of whom was at Columbus Children’s Hospital. After reviewing the two surgical options and meeting with the surgeon (Dr. Mark Galantowicz), we decided to take a leap of faith and chose the newer method. It was a difficult decision, knowing that we were determining Charlie’s fate. Dr. Galantowicz had been doing this particular method for about three years with promising results, although there wasn’t a large group of children to look at as “proof,” and there were certainly no long-term statistics. There were no promises, but we felt this method would give Charlie a better chance at having a normal life. It was sad to think about all of the difficult procedures and operations Charlie would face. We didn’t want him to suffer the pain of several surgeries, but we knew we had to give him this chance to live.

This hybrid method involved putting bands on the pulmonary arteries to control blood flow into the lungs and placing a stent in Charlie’s PDA to keep blood flowing through that opening (Stage 1). These surgeries would happen immediately, and then around 4-6 months, Charlie would have a “big” surgery (Stage 2) that included the traditional steps 1 and 2, the Norwood and Glenn. The benefits were that Charlie would have one open-heart surgery on the bypass machine instead of two. He would be bigger and more mature by 4-6 months and his body would be able to handle the trauma of such a big surgery. And because he would be bigger, there would be no circulatory arrest, and thus less risk of brain damage. The final step (Stage 3) would be the traditional Fontan, which would happen around age 2 or 3.

On August 4, 2004 when Charlie was 5 days old, he had his first open heart surgery to place the bands on his pulmonary arteries. We started the day by having Charlie baptized, surrounded by his entire family. We were definitely scared, but focused on bringing him home, knowing this was a step on the way. The surgery lasted about 4 hours and went very well. For the next few days, he rested comfortably and was able to start taking breast milk out of a bottle. Then on August 9, Charlie had a catheter procedure done to place a stent in his PDA. This also went extremely well. Two days later, on August 11, we finally got to bring our son home. We were thrilled, but scared. We wanted to treat him as normal as possible, but it was hard knowing what he had already been through and what he would face down the road. His medications included digoxin, Lasix, and 1/4 aspirin. He also ended up needing Zantac for reflux. We started a new chapter in our lives, one that involved medicines, lots of doctors’ appointments, and worrying about our son’s life and future.

The next several weeks went by rather uneventfully. We tried to stay optimistic and focused on acting as normal as possible. We believed Charlie would benefit from being around our positive energy and he seemed to do just that. He was eating well, sleeping fine, and growing and developing like a normal baby. He started smiling early, around five weeks and never stopped. He was very alert and seemed to be the happiest baby in the world! We saw a cardiologist weekly, so they could closely monitor Charlie’s heart function. His blood oxygen levels hovered around 80, which is what they wanted. When he was close to three months old, the doctors decided it was time to do a heart catheterization. They wanted to check his pressures and get a better look at a narrowing (gradiation) they had noticed on ultrasound. The catheterization went well and it was determined that it was fine to wait a little longer before having the “big” surgery. So we went home and continued normal life for a little while longer, anticipating the day when they would tell us it was time for surgery.

He continued to eat and grow and started cereal with no problems at four months. He laughed and smiled constantly. He enjoyed being touched and was very engaged with those around him. We learned he was slightly behind on his physical development and would need physical therapy after his next surgery, but his cognitive development was right on track. Even though he was stable and seemed fine, we knew the surgery was around the corner since they wanted to do it before he was six months old. We found out in early December that it would take place on January 7th. While we were scared for the surgery to take place, we were also anxious to get it behind us. We had full confidence in Charlie’s surgeon, and in Charlie, that things would go well.

On January 7th, when Charlie was a little over 5 months old, we went to Children’s Hospital for his big surgery. It was a very emotional day. Just before we handed Charlie over for surgery, Dr. Galantowicz said, “I’ll take good care of your son.” We believed him and held on to those words as we waited over 9 hours to see our son again. Throughout the day, a nurse gave us updates every hour and half and we were pleased to hear things were going well. At 3:30, 7-1/2 hours after starting the surgery, the nurse came out to tell us Dr. Galantowicz would be out to talk to us soon. The operation was over! We were so relieved when we finally got to talk to the surgeon and hear him tell us how well it had gone. Around 5:00 pm, we were able to see Charlie and he really looked pretty good for having just had such major surgery. He was covered with wires, tubes, and tape, and slightly swollen, but he was resting comfortably. We were thrilled to be able to touch him again! Tears rolled down our cheeks as we looked in wonder at our brave little guy.

By 2:00 AM (just 11 hours after surgery), Charlie took his first bottle, and by the next afternoon, he warmed our hearts by smiling for the first time. He started nursing again soon after and within 48 hours, he was transferred out of the Intensive Care Unit to the step-down unit. Everyone was amazed with how well he was recovering. They told us we’d be going home soon; we couldn’t believe it since we expected to be in the hospital for at least ten days. Just 4 days after his operation, we were released to go home. The doctor on the floor told us he had never sent a patient home that soon after this surgery, but felt there was no reason to keep him at the hospital. We were thrilled!

Almost immediately, he seemed stronger and was able to nurse faster. He started moving around right away, as if nothing had ever happened. We’d look at him amazed—he did not look like someone who’d just had major heart surgery! A week after we came home, he went back to Children’s for a check-up. His blood oxygen level had already gone up to 90 percent! A week later it was about the same, and he continued to get stronger physically.

That was a little over a month ago and life has gotten back to normal for us. He is a cuddle-bug and loves being kissed. He adores his big sister and his face lights up when she plays with him or just walks into the room. He has also become very interested in our dog, who can’t wait for Charlie to be big enough to actually throw the bone she constantly drops in his lap. He is working on sitting up, putting weight on his legs, and has recently started rolling over. He continues to amaze us each and every day with his strong spirit and sunny personality. We know another surgery lurks in the future, but for now, we are grateful to be celebrating every day with Charlie.

We are thankful to so many people—especially to our families and wonderful friends. Their love and support kept us strong during those first few days and months and they continue to be there for. We are also thankful to the wonderful doctors, nurses, and other health care workers at Children’s Hospital. We are especially grateful to Dr. Galantowicz. He is kind, sincere, and extremely talented. From the very first time we met him, we got the feeling he truly cared about our son’s well being. He gave us hope when we thought we had none, and he continues to be one of Charlie’s biggest supporters. We are also thankful to his cardiologist Dr. Daniel Rowland, who saw Charlie almost weekly to monitor his heart function. He was extremely thorough and was encouraging, while at the same time, realistic when he had to be. And there are the countless others out there, strangers and new acquaintances who prayed for a baby they didn’t even know. We sincerely appreciate all of the prayers that have been said and continue to be said for Charlie. We believe he is proof that God is listening!

We named him “Charles Vincent” (after both of our fathers) not knowing everything he would be facing in his life. It turns out we picked the perfect name as Charles means “Strong,” and Vincent means “Conqueror.” We are thrilled and proud to say that Charlie is definitely living up to his name!

March 2005, 8 months old

Charlie continues to do well. He has made great progress physically and is gaining weight like a “normal baby.” He is sitting up on his own, rolling over, and standing with support. He has started physical therapy and seems to be responding to his exercises (although he is still not a fan of “belly time.”) We are anxious for him to crawl, although we wonder if he’ll skip it and go straight to walking. He has 2 teeth and shows them off by grinning constantly. He is our little champion and we know he’ll continue to melt all of our hearts with his bright eyes and big smile!

August 2005, 12 months old

Charlie recently celebrated a big milestone: his first birthday! We had a party with all of our friends and family at the end of July to commemorate the big day. Charlie enjoyed the party and all of the people. He especially loved his cake! After his birthday party, we took a family vacation to the beach on St. Simons Island in Georgia. He loved the sand and playing in the surf!

Charlie continues to do really well. He crawled the day after he turned 10 months and is now getting really close to walking on his own. It all spells trouble for us as he seems to be much more "inquisitive" than his older sister was at this age.

At his last cardiology appt, right before his birthday, his pulse-ox was at 87/88 and everything else looked good (he even cooperated for an echocardiogram without sedation!). He is eating and growing well, weighing in at almost 21.5 pounds (25%) and measuring 31 inches (90%). His cognitive development is right on track and he is in the 50th percentile for his gross motor development. He is starting to say a few words and is signing a few others. He loves showing off his new tricks, like waving bye-bye and blowing kisses. We couldn't be more proud of our little champ!

November 2006, 2 years old

Charlie turned 2 this past summer and thoroughly enjoyed his "Thomas the Train" party. He continues to do really well, speaking in full sentences now and learning new words and phrases every day. The only time we notice his condition is when he runs or plays hard, because he will breath heavily. It doesn't really slow his down, however! He loves chasing his big sister and riding his tricycle in the driveway and down the sidewalk. He continues to be a very happy kid...smiling and laughing constantly.

We haven't been to the cardiologist since August, when we were told to schedule his next appointment for February of 2007. At that appointment, we will begin discussing his next surgery (the last step in his 3 stage reconstruction). This surgery is slated to take place in April 2007 and we are confident he will do very well! We are nervous and scared, but we are looking forward to having this part of his "heart story" completed.

September 2007

On April 16th of this year, Charlie underwent his third open heart surgery, the Fontan. Thanks to his amazing surgeon Dr. Galantowicz, the surgery went great, but pleural effusions kept us in the hospital for 20 days. Charlie seemed to feel great about 5 days post-op, but the chest tube just kept draining, and draining and draining. Toward the end of the first week there, he started cruising around the hospital on his trike, playing with toys, and eating and drinking somewhat normally. His tube kept plugging up, so at the beginning of the third week, he was sent back to the CICU to get a new (and much smaller) chest tube. This one just had a small bulb instead of a large box, so Charlie became even more mobile on his tricycle. We were frustrated about the long stay, but Charlie kept our spirits up by smiling, laughing and being silly. He was so brave through it all and we couldn't have been prouder of how he handled everything.

Now that we've been home for 4 months (it seems longer than that), life has totally returned to "normal" and even better than pre-Fontan "normal." He is pink, satting around 98 and has much more energy than before. He started preschool a few weeks ago and loves every minute of it. He is also taking gymnastics and loves to show-off his ability to bounce and roll around the room.

Charlie's amazing spirit continues to touch the lives of many. We know Charlie was put here to share an important story, and we truly appreciate every minute of every day with him. He is a true champion!