Our Letters of Hope

We were so excited for our routine ultrasound at twenty weeks gestation. It was then that we discovered our first child, a daughter, was diagnosed with a life threatening heart condition. The most exciting day of our lives as new parents turned into one of the scariest, most confusing days of our lives. That was the day our lives were changed forever. We stayed hopeful, although, it was very difficult, and only shared our news with family until we were sure of the diagnosis. We had no idea that around 40,000 babies each year were born with a CHD. After speaking with pediatric cardiology specialists a long week later they had determined that she had severe aortic stenosis resulting in hypoplastic left heart syndrome. The left side of her heart had not developed properly and was not large enough to function properly. We were crushed, but after speaking to our pediatric cardiologists we felt better hearing that many children do well for many years with this diagnosis. At that time they wouldn't say for sure if she would have one or several open-heart surgeries. They needed to do an echocardiogram (echo) on her heart after she was born as opposed to fetal echo's. We were also told that a mere twenty years ago most children with this condition did not survive. The medical advances since then have been remarkable and for that we are thankful. Without funding for CHD research Ellie would not be with us today and we cannot imagine life without her big bright eyes and smile that lights up a room.

On August 8, 2007 at 3:34 pm our daughter, Ellie Jo, was born. This was another joyful yet nerve wracking day. We were only able to see Ellie for literally two minutes once she was born before they whisked her away for further testing. Around 11:00pm that night we found out that Ellie would need an unexpected blade septostomy procedure right away; a cardiac catheter technique that cut a hole between two chambers of her heart for better blood flow. We were able to go see her for the first time for about ten minutes that night before the procedure. At 1am on August 9th we finally got to see our daughter. She was hooked up to an uncountable number of tubes, wires, and monitors. She was very puffy from the procedure she had just undergone but she was the most precious and beautiful baby we had ever laid eyes on. It was a difficult site to see with the several monitors that she was hooked up to, but we looked past all of the lines and machines to see Ellie was with us and at that point nothing else in the world mattered.

Ellie remained in the Pediatric Intensive Care Unit (PICU) on a respirator and we anticipated her to go through the Norwood Procedure five short days later. The doctors had concluded that Ellie needed the three staged surgeries we had discussed, as a possibility, before she was born to reroute all of the blood flow in her heart so that only the right side pumped. We knew that of the three surgeries that Ellie needed this was the most critical. We were very hopeful going into the surgery because of the 70% success rate of children. Although this was the most difficult thing we would ever have to face we had remained very optimistic about the whole situation. Through prayers we knew she would be all right. We are very lucky to have such wonderful families, friends, and co-workers. Everyone cares so much for Ellie and having their continued support still helps us get through everything that comes our way.

We finally got to carefully hold our daughter a long three days after she was born. Still hooked up to numerous wires and tubes the nurse would carefully place her on a pillow in one of our laps, that's how we would "hold" her. During those days we would whisper words of encouragement to her knowing that she was aware that we were by her side everyday. When August 14th finally came we tearfully kissed our daughter and sent her off to be in the hands of our fantastic pediatric cardiology surgical team. The teams' nurse practitioner contacted us many times throughout the day to let us know that things were going fine and that Ellie was doing great through bypass and the open-heart surgery itself. It was a huge relief having her call us and stop by our room throughout one of the most frightening day of our lives.

After many, many ups and downs during the thirty-one days in the hospital Ellie successfully adjusted to surgery. We became very close with many nurses in the PICU and on the pediatric floor. After being taught how to care for Ellie we happily, and a bit nervously, took her home on September 10th. She came home with eight medications, a nasal gastric (ng) feeding tube, an oximeter (a machine that measures her oxygen saturation levels in her blood) and our instructions on how to care for her. They say babies don't come with instruction manuals but our baby did! Nurses trained us to put in the ng feeding tube, check placement, give medications, and check O2 saturations. We felt like nurses after going through it all!

Once at home we had twice weekly in-home nursing visits and many visits back to the specialty clinic for checkups. We were advised not to take Ellie out in public or near germs of any kind if we could help it. If she got sick, they warned us, she would be back in the hospital until she was better. I decided to quit my job as a teacher and stay home with her while Daddy went off to work each day; it was the best thing we could do for our sweet girl. We knew that in a few months Ellie would be going back to undergo her second surgery, the Glenn Procedure, and we needed to keep her healthy. We enjoyed each day with Ellie realizing that it was a blessing to have her home with us. The first few months went fine. Then, in November her O2 sats really started to dip below a level that cardiology was comfortable with. Although they wanted to wait until Ellie was six months old they decided to go ahead with her cardiac catheter, a pre-operative procedure, the last week of November. During the procedure they ballooned up a narrowing in her aorta and the results from the catheter stated that she should indeed go through the Glenn a little earlier than expected. After anticipating another surgery over the months past we were again very anxious and nervous to be approaching the second surgery so soon. It was a very stressful few weeks but we got through this time coming even closer together as parents and a couple.

On January 6th we met with the surgical team once again. They took us through the surgery and what to expect. Since we had already been through the prior surgery we knew what to expect this time around; many tubes and wires, our daughter lying still unable to move and asleep in her intensive care room. After talking with the team we actually felt a bit relieved knowing that the success rate for this surgery was 80% and that most kids were not in the hospital as long as the first procedure. We always look for hope in times of stress and we take each day as it comes.

On January 8th we took Ellie in for the Glenn Procedure, she was five months old that day. The second longest and most difficult day of our life was underway. Again, staff contacted us throughout surgery to let us know everything was going well. It took them longer than expected to get through old scar tissue from her first surgery and that caused some extra bleeding that took longer to stop. Other than that bump in the road things went beautifully. Six hours later we were able to see our baby again. Seeing her lying still the numerous lines and machines was hard even the second time around but we were so relieved it was over with and she was doing so well. She healed wonderfully and was extubated (off of the breathing tube) two days later, a quick recovery! Our stay in the hospital this time would have only been a week but due to fluid around her left lung, a serious set back called chylothorax, we ended up staying an additional twenty days. We had an uneasy familiarity with the hospital, but it was still a very long stay for us. We were more than ready to go home on January 28, 2008.

In March of 2008 Ellie started to take some of her bottles by mouth. At this time we still had the ng feeding tube. The reason heart babies typically have feeding tubes is because it takes so much energy for them to drink their bottles it is like a full gym workout for an adult and burns so many calories they have a really hard time gaining weight. Often times it wasn't worth it for her to put forth so much effort. We were thrilled when, after many trial days, Ellie finally started taking in everything by mouth allowing us to discontinue the use of the ng tube. This was the first of many milestones that Ellie has accomplished and we couldn't have been more proud. One month later, in April, Ellie learned to sit up unassisted. We were so very proud of her she was really getting stronger!

On August 9, 2008 (the day after her first birthday) Ellie was honored at the Linn County American Heart Association's Annual Heart Walk. She appeared in the local city newspaper and on the local news station. We couldn't be more proud of her accomplishments over the past year and felt blessed that she was doing so well. It was a real milestone for us to be up in front of hundreds of supporters with our little fighter. It had been quite a rollercoaster ride of a first year adjusting to being parents. We had come very far as a family and couldn't be happier to share it with our community. Raising money for CHD research and the American Heart Association is so important to us. It gives us hope for Ellie's future and hope for all of the thousands of families struggling with CHD's. It is not an easy road. The struggles, however, reap rewards that cannot be described.

In September of 2008 Ellie needed to go in for another heart catheter as a check-up from her surgery in February. We didn't expect to find anything but they did find three things that needed repair. Her aorta needed ballooning for the second time, her left pulmonary artery was very narrow and she had an extra vessel that had grown off of her Glen shunt that needed to be coiled. The left pulmonary artery was the most critical of the three. It had a very serious narrowing that caused all of the vessels leading into Ellie's left lung to be very short and thin. Our catheter surgeon thought he would need to place a stent, something they rarely do in infants since it cannot grow with them. This was very upsetting news especially since we didn't expect to find any problems. We were very anxious for the next few hours. When Ellie was finally through her procedure the surgeon told us he was able to successfully balloon up both narrowings and did not need to place a stent. That was a huge relief to us and we are so thankful for the wonderful surgeon we have. The ballooning of the left pulmonary artery should help those vessels to grow but we can't be certain of that until her next catheter in the spring of 2009. At that time the surgeon will make sure both narrowings have stayed open, if not they will need to balloon them again as we all hope for the best.

On January 14,2009 we went in for a routine check-up with the cardiologist and got some news that took us by surprise. Ellie's echo showed that her right ventricle was not functioning at the level it should be anymore and her tricuspid valve was leaking. Her heart only pumps with a single ventricle, the right ventricle. The doctors told us she may need a heart transplant. Shock. It felt like the day we found out our unborn baby had a heart defect, the scariest day of our lives. Ellie had been doing great at home, she was active and happy showing no signs of distress or pain. We scheduled a cardiac catheter for the following week and hoped for the best; that was all we could do.

During the catheter on January 21, they placed a stent in Ellie's coarch (the narrowing in her aorta). This doubled the size of her aorta from 3.5mm up to 7mm allowing blood to flow much more easily over a 23mm length. They were also able to balloon her left pulmonary artery up one more mm. The catheter was a success but kept us guessing if it would relieve the right ventricle. Then at her follow-up appointment her echo showed no change in her right ventricle. This wasn't good or bad news at that point. It looked like a transplant was still in her near future, hopefully a couple years, but at this point she was stable. She had gained one full pound in the two weeks post catheter. The stent had really allowed her to keep calories rather than burn them up trying to push through a tiny opening in the aorta.

We will continue monitoring Ellie's right ventricle with echo's every couple of months. When and if the time comes for Ellie to be placed on the transplant list we will deal with it just like we have dealt with everything else, in a positive manner. They carry with them a whole new set of risks and complications. Transplants are a very scary thing and something we will hold off discussing until necessary.

As for Ellie's development physically she is right on track with other heart babies. We started therapy with her when she was nine months old. She had just learned to sit up at home and eating baby food was becoming an issue. We started going for occupational therapy to help with some feeding strategies and for physical therapy to help her gain strength. Our therapist told us that for each day a child is in the hospital it is a two to three day delay for physical activity since they are so weak while laying in their hospital beds. Ellie sitting up at nine months was very normal. Feedings are still an issue but very slowly improving. This is a pretty common occurrence in children that have had feeding tubes for months. After months of physical therapy on October 23, 2008 Ellie crawled for the first time. It was an incredible milestone for our little girl. It showed us how her strength was building to support her upper body and what a true fighter she really is.

At home and nineteen months old, Ellie is stable. She is a busy little chatterbox who enjoys playing with her baby and riding her pink pony. We still have visits from our home nurse to monitor signs of heart failure and to get RSV shots once monthly over the winter flu season. Ellie is currently on six medications, five for her heart. She is successfully taking her medicine by mouth twice a day, a major accomplishment that took months to conquer after discontinuing the ng feeding tube. We still spot-check her O2 sats on our oximeter but they have remained in the low 80's; much better than the 50's that we experienced in November and December of 2007.

Ellie's future is unpredictable with two possible paths. She still has one surgery left, the Fontan Completion or the possibility of transplantation. If she has the Fontan it will take place between the ages of two and three, if she has a transplant it would be sooner. We are able to remain hopeful because of the support our family has and the amazing advances that are made each day in the medical world. We have faith in our doctors that they will make the right decisions for our sweet girl. From the outside you would never know that Ellie had a problem in the world. She is carefree, happy, and loves life. Like I said, our lives changed forever when we discovered Ellie had a heart condition; they changed for the better. We don't let the small things in life get to us, we remain positive, take nothing for granted, and enjoy each day as it comes spending every minute with our amazing daughter. We are very blessed to have Ellie in our lives; she is a true miracle. We owe an immeasurable amount of thanks to the staff that took care if Ellie, they have given our daughter a chance at life and for that we are truly grateful. Sure it's been a long two years since we found out our unborn baby had a CHD but we wouldn't change a second of it. We are stronger because of everything we've been through and the bond our family has will never be broken.

Kevin & Heidi Schmidt