Our Letters of Hope

My mother always told me that when I have a daughter, I will understand. What she meant by that, I did not know, until December 13, 2007. This is the day that my precious daughter, Ryan Sue, was born. Ryan was born via c-section so I had to wait about 15 minutes to see her. When I looked at her from the operating table, I knew exactly what my mom had been saying for so many years. It's weird how people say that you instantly bond with your child, but it's the truth. I knew right away that she was the best thing to ever happen to me.

After 3 days in the hospital, Ryan and I both were given the bill of good health and released. I was so nervous, scared, and excited all at the same time. I felt like we were in the hospital for forever. As we got our precious daughter home, we had no idea that we would soon find out how long forever really is.

Two weeks after Ryan was born, I took her to see the pediatrician because of how fussy she was. I was a new mom, and every little cry out of the ordinary scared me. This particular day, Ryan was very cranky. I tried feeding her, swaddling her, you name it and I did it. Ryan had only seen 1 other pediatrician. Once when she was born, and then the same doctor for her well visit at one week. On this day, we saw Dr. Siegel. (Later to be named Dr. Bad News, respectively) Dr. Siegel informed me that he heard a murmur in Ryan's heart, and he wanted her to see a cardiologist at Cincinnati Children's Hospital. He didn't think she had colic, and that she was just having a bad day. He sent the referral form to the hospital, and 2 days later, they called me to set up an appointment. Ryan was scheduled to see Dr. Lee on January 10, 2008. This is the day that would change our lives FOREVER.

Jay had just started a new job at the first of the month, so I took Ryan to her appointment alone. I met Kathy, the registered nurse that works with Dr. Lee. She told me that 9 times out of 10, it's just a small murmur that kids outgrow, and that I shouldn't be worried. Kathy began to check Ryan's height and weight. She then told me they were going to give Ryan an EKG and echocardiogram. After both tests were done and hearing Ryan cry for almost an hour, I was told to sit in the exam room and that Dr. Lee would be in shortly. Again, time seemed to have just stopped. We waited for the doctor for almost an hour, yet it felt like 2. When Dr. Lee came in, she shook my hand and introduced herself, and then listened to Ryan's heart. Dr. Lee then pointed to a poster on the wall of the human heart, and I immediately knew that I had something to worry about. This wasn't normal or routine. I could tell by the tone of her voice when she first started speaking, that this was going to be bad. She told me that Ryan has what is called Pulmonary Valve Stenosis. It's a type of congenital heart defect. I instantly blamed myself and thought back to my pregnancy. I didn't smoke….I didn't drink….did I eat something wrong....my doctors told me I could have a little bit of caffeine….were they wrong? She assured me it was nothing I did, or didn't do to make this happen. She printed out a packet of information on the defect and told us to come back in 6 months. As of then, the defect was mild, but she needed to be monitored. I knew one thing, that there was no way I would go to another one of those appointments by myself again.

When I got home, I had to call Jay and break the news. He seemed confused; I guess because he didn't really understand what I was saying. When he got home from work that evening, we sat down together and looked at the paperwork. We read about how the side effects do not start until the stenosis gets worse and your child gets older. The paper said one of the side effects was being short of breath, and another was being easily fatigued. We both began looking at Ryan and really listening to her breathing. We were a little scared at the time, but we had no idea how scared we were going to get in the future. There were bigger things to come then just the news of something being wrong.

At Ryan's 6 month follow up appointment, we got more bad news. Ryan's condition had gotten worse. It still wasn't too the point where Dr. Lee felt that she would benefit from any form of treatment, yet she didn't want to wait another 6 months for Ryan to be seen again. We came back in September and received better results. Ryan's heart was the same as it had been in July. We left that appointment feeling good, and holding our heads high. It was so nice to be able to call friends and family with good news and too not be crying or upset on the phone. We were told to come back in December for another EKG and echocardiogram.

On December 5, 2008, we returned to see Dr. Lee again. After Ryan's now "normal routine" we went into the exam room and waited for the doctor to come in. When she got there, we could tell by the look on her face that things were not still good. Dr. Lee told us that yet again, her heart was worse. She told us she thought balloon dilation would be good for Ryan and she would talk to another doctor at the hospital to see if he felt the same way. We weren't sure when we were going to find anything out. Having to wait for the news of her procedure was the worst thing yet. We tried to have a normal weekend, and I continued planning Ryan's first birthday party. There were about 65 people coming so I had a lot to do, and it was just the next weekend.

On Monday December 8, 2008, while at work, my cell phone rang and the caller ID showed a number that I knew was from Children's Hospital. At first, I was hesitant to answer. I thought "maybe if they leave a message and I listen later, it will lighten the blow." I knew I had to answer and I did at the last minute. Dr. Lee was on the other line, and told me she had discussed Ryan's case with Dr. Russell Hirsch. Dr. Hirsch works in the cardiac catheterization lab at the hospital and he agreed with Dr. Lee. Ryan was scheduled to have her balloon put in her heart on January 9, 2009. We were able to get through Ryan's birthday and Christmas.

Although everyone told me that the balloon procedure wasn't that invasive, I felt like I needed to really treasure Ryan's first birthday, and Christmas. A part of me knew that no matter how severe the surgery was or not, anything could happen and go wrong at any moment. I hated the thought of that being my daughter's first and only birthday she would ever have. It was so hard to get through that time with us knowing what was ahead.

The day of the procedure, we had to wake up pretty early. Ryan wasn't allowed to eat or drink anything so we waited until the last minute to wake her up. We were scheduled to be at the hospital at 8:30 on a Friday morning. We only live about 15 to 20 minutes away from the hospital but with the morning traffic, we left around 7:30 am. We kept Ryan in her pajamas because she would be put into a hospital gown as soon as we got there. We were both pretty quite on the drive up, and I couldn't fight back my tears. We arrived at the hospital and got our over night bag out of the car along with Ryan. It was so hard not to just turn around and go back home. We went upstairs to get her checked in, and the nurse showed us the room where we would be staying for the night in cardiac ICU. In the room next to ours, there was a little boy who had just received a heart transplant the night before. I remember hearing his parents sobbing through the walls. My heart went out to them and still does. I felt sort of heartless at that point. Here we were SO worried about our daughter's "mild" procedure and their son wasn't able to breathe on his own. My prayers will always be with that family. Through all of their pain, they were so nice and even comforting to us. They treated us like no matter what the condition of your child you still have the right to worry no matter how big or small the problem.

Surgery was scheduled for 10:30 am and in the 2 hours between our arrival, and the procedure, there was a lot of people coming in and out. We met a few anesthesiologists, as well as doctors and nurses. Dr. Hirsch came in and spoke to us about the surgery and let us know that one of the nurses would call my cell phone several times to update us on how things were going. The time had come. I picked Ryan up and held her tight as we walked down what seemed like a never ending hallway. One of the doctor's was there with us, and he told us that we needed to hand Ryan over to him. I squeezed her so tightly and was crying so bad. I'm sure the doctor was wondering if I was ever going to let her go. I gave her to Jay and he did the same as me. We were both crying hysterically. Jay gave Ryan to the doctor, and she started crying right away. I'm sure she could sense that something was wrong, and she didn't like being held by a complete stranger. The nurse had us walk away from the double doors that let to the cardiac cath lab. We could hear Ryan crying all the way down the hall as we headed back to the room. Then, it just suddenly stopped. That's when I knew she had just gone to sleep. It took everything I had to not run back to the lab and try to wake her up. I hated hearing nothing. A part of me had comfort in hearing her cry as I walked away.

The nurse called my cell phone several times as promised to let us know what was going on in the lab. The last call that I received was her letting me know that Ryan was awake, and was in recovery. The procedure took almost 3 hours. We were able to see her in recovery but the warned us about how she would look. The nurse said that Ryan was still out of it and wasn't responding to anything. It took us about 5 minutes to get back to the recovery room. When we walked in, our little fighter shocked us all. She had spit the breathing apparatus out of her mouth, and was guzzling apple juice from her sippy cup and snacking on cheerios. The nurses couldn't believe how much changed in such a short time. That's when I knew that she was going to be just fine. The nurse told us that we needed to go back to our room and discuss the procedure with Dr. Hirsch. I wish I could say that we heard good news, but it was far from it.

Dr. Hirsch informed us that with balloon procedures, the success rate is almost 99%. However, Ryan's balloon, didn't work at all. He told us that her pulmonary valve was like a rubber band. Once the balloon was removed, it snapped right back into place. We were informed that the only way to help Ryan at this point would be open heart surgery. He told us to follow up with Dr. Lee in 3 months to check on the status of Ryan's stenosis.

We were shocked to learn the news about the operation, but yet happy that she made it through. We spent the night in the hospital, and went home the next morning, with a follow up appointment scheduled with Dr. Lee. We took good care of Ryan's puncture site in her groin area and did what we were told.

Over the next 2 months, Ryan's O2 sats dropped. Not to an extreme low, but it wasn't normal for her. Dr. Lee decided to change Ryan's follow up and make it earlier. We took her in and she got the usual echo and EKG done. Dr. Lee told us again that the balloon did no improvement at all to Ryan's heart. We know that she will end up with surgery, we just don't know when. There was no explanation to why Ryan's sats had dropped but they have since then, gone back up. She is seeing Dr. Lee every 3 months for follow up visits. We pray every day that the next appointment will still have good news as the outcome. I know that doesn't make sense because I have to face the reality that one day, the surgery is going to happen. It's just a hard concept to grasp. In the mean time, while we wait for the next follow up visit to come, Ryan is a normal, active and happy toddler. She amazes us everyday with how smart she is. We know that she is strong and can pull through the hard times that she will have to face, forever.

Alisha(Ryan's Mommy)