JJ Merryman was born on November 10, 2015. At four weeks old, he was diagnosed with coarctation of aorta, requiring emergency heart surgery. At 11 months old, he was diagnosed with recurrent coarctation of aorta. His aorta had narrowed again and he had a balloon angioplasty cathaterization. JJ will be followed his whole life by a cardiologist.
Our daughter Harper was born on January 16, 2015. We knew before she entered this world with us that we would be faced with some challenging situations. Harper was diagnosed with HLHS at 25 weeks before birth. We knew she would have to overcome many obstacles, but not once did we lose our faith that God would take care of our girl. She was born 7lbs. 7oz. 18 inches at 2.09 pm @ Vanderbilt. She was exactly what I imagined she would be beautiful and rosy pink.
When she was three days old she underwent her first OHS known as the Norwood. During this time waiting to see how she was doing we were informed by our Cardiologist Dr. Mettler that her heart was the poorest they have seen in a very long time. They didn’t think she would make it through the night. But our God came through and she was put on ECMO for about 14 days. During those 14 days she underwent all sorts of different procedures trying to give her the best shot to come off ECMO. She finally did and we were so proud God pulled through for us once again. She did well and looked amazing for 7 days.
During the 7 days they did many ultrasounds to make sure all was well with her and it was, but they didn’t predict what would happen next. We went home just to get a good nights rest with her older brother Gavin. I kept telling my husband (Josh) that something just was not right with her. I had that feeling. I kept telling the drs but they assured me that they didn’t suspect anything form all the tests they had ran. But early morning I called to check on her before heading back and the nurse reassured me she was doing well and had a great night. But 15 minutes later they called back and she had went into cardiac arrest. I knew it I said and I flew up to Vanderbilt. When I arrived I knew that feeling that she was not going to be ok from now on. She immediately went back on ECMO and sustained being on that machine the rest of her time.
After cardiac arrest they did numerous test EEG, EKG, and ultrasounds. They even took her back again for another OHS to try and remove the clot but it was gone and we thought our prayer was answered then. But little did we knew it just moved around in her little body messing every organ up that stood a chance. During the next couple of days we watched her to see how she would progress. They decided they would take her back for another OHS to redo what they did in Norwood and just rerun her bt shunt straight to her lungs. I thought ok this is it we got this. But over time her progression just seem to worsen and we as parents had to dig deep and come to a conclusion that God needed her and we were so lucky to have her as long as we did.
Days to come she was put on dialysis to get the fluid off. She just was not doing well at this point. They told us during many meetings with them that a time would come when we would have to call family to come see her. So we called every close relative to come as soon as they could. We waited out three days of visits just to make sure everyone got to see and hold her as best as they could.
On the 15th of March at noon they would slowly turn down the ECMO machine to see how she would do. Within minutes we all knew that this was it for Harper. Her lips turned blue instantly. We prepared at that second a time we thought we would never have to face as parents. I held her in my arms and as my husband sat beside us as we watched her pass in my arms. I know that God was right there with us the whole time. Harper lived for 59 days but most of her life was spend on ECMO except 7 days.
We heard the words no parent wants to hear at our 20 week appointment, “there’s something wrong with her heart”. After many doctors appointments we found out our sweet baby girl had Truncus Arteriosus. This was not only a severe CHD but a very rare one at that. We did lots of research and educated our selves, we interviewed both Dr Metler and Dr Bichell and ended up loving both of them. Dr Bichell did Callie’s surgery 8 days after her birth. It was a success with one complication Callie’s pulmonary arteries are very small and she now has pulmonary hypertension as well as mild aortic stenosis. Callie is now 5 months old and we are preparing for her first heart cath. This journey has been the scariest thing our family has ever been through, but it has defiantly made us stronger. Our daughter shows us everyday what a true fighter looks like.
Our son, Eli was diagnosed pre-natally at the 20 week ultrasound with a congenital heart defect. We were absolutely devastated and terrified at this news, especially when we learned that he would undergo open heart surgery quickly after birth. His surgery, at one week old, went well and he came home in 17 days. At 4 months old, we realized that he wasn’t growing and under doctor’s care we altered his diet. We were relieved that he quickly turned a corner.
In March 2016, he had his second open heart surgery and came home in just 72 hours! Less than a week after surgery he was jumping off couches (his mommy was both relieved that he was himself, yet terrified that he wasn’t resting enough.)
Eli celebrates his 4th birthday in February 2017 and is a rambunctious, charming, affectionate, energetic pre-schooler who loves to draw, play soccer, give lots of kisses eat chocolate chip cookies in two bites. But having a heart defect is a lifelong condition and it affects our entire family. Our daughter, who is almost three years older than him, adores her brother and has a tendency to worry.
We are confident that he is receiving the best care and try to truly enjoy every day with our strong little family. Our family has been very active within the heart community, committed to supporting families like ours, while always building awareness of congenital heart disease within our community. Eli’s mom has already been to D.C. once to advocate for CHD families and she plans to go again in 2017.
After what appeared to be a picture perfect pregnancy, we were so excited to head to the hospital for our first child, Caleb, to be born. This day, which began with excitement and joy, would turn into a roller coaster of emotions.
After hours of labor, it was apparent that Caleb was in trouble. His heart rate kept dropping. Finally his heart rate dropped and would not come back up. I was rushed back to do an emergency cesarean. When he was born, Caleb’s oxygen saturation never went above the 60s. A normal person’s oxygen saturation is usually above 95. I kept asking to see him and the nurses kept replying, “we just need to pink him up a little.” As naive new parents we accepted this explanation. However when they finally showed him to me, they told us something was wrong and he would need to be taken back to the special care unit. After a couple of hours of trying to diagnose the problem, it became clear the complication was related to Caleb’s heart and he would need to be transferred to Cincinnati Children’s Hospital.
Caleb was brought to me in an incubator where I was finally able to touch his hands and feet. While I tried desperately to soak in these brief moments with him, the transfer team explained to us that something was wrong with his heart and that he would require open heart surgery most likely within the first week of his life. My husband then went with our son, while I had to remain at the birthing hospital. At Children’s Hospital they diagnosed Caleb with a Congenital Heart Defect called Transposition of the Great Arteries.
Only three days later our sweet newborn son had open heart surgery to save his life. Kissing our son and sending into an operating room with doctors and nurses we had only just met the in the last couple days was one of the most excruciating moments of our lives. After hours and hours the surgery was finally complete. Caleb did well in the surgery and recovered quickly with very few complications.
Looking at our son now still amazes us sometimes. He has needed some extra help in areas because of developmental delay and he does have a couple complications with his heart that his cardiologist is monitoring. But over all Caleb is a typical little boy. He plays basketball, loves playing outside, and can tell you anything you want to know about his video games. Our miracle boy fills our lives with joy and laughter. He has changed our lives forever and reminds us every day to focus on what is truly important.