by: Sarah Hedlund
My husband, Rik, and I are originally from the Dallas/ Ft. Worth area. We got married in 2003, and had our daughter, Piper, four years later, in December of 2007. When she was four months old, Rik took a job at Fellowship Bible Church, we moved to Little Rock, and eventually had our son, Charlie, in June of 2011. In August of 2013, we moved to Northwest Arkansas, and absolutely love it here! My husband is a pastor on staff at Keypoint Church, and I lead worship on Sundays. In September of 2016, we found out we were pregnant, and had our twins Jace and Parker on March 6th of this year.
Rik and I have struggled with infertility for the last 14 years. We started fertility treatments after we lost three babies. Piper was born after that, and, three and a half years later, after one more loss, Charlie was born. After about a year of fertility treatments in 2014, we decided that we were done trying to have another baby. It was a hard decision, but we felt like the Lord was calling us to become foster parents. We had four placements over the eight months we were open. Our youngest was 10 weeks old when he came to us, and was 10 months old when he moved to his forever home. We closed when the boys were born, but plan to reopen our home sometime in the future.
When I found out I was pregnant in September 2016, it was huge shock. We assumed we were done. A week after finding out we were pregnant, we found out we were having identical twins. I have always wanted twins, so I was super excited. Rik was shocked, but excited, as well. We started seeing Dr. Canzoneri, a maternal fetal specialist, in October and pretty much saw him every week till the boys were born. At 17 weeks, we began to suspect the boys had Twin to Twin Transfusion Syndrome. TTTS is a rare, serious condition that can occur in pregnancies when identical twins share a placenta. Abnormal blood vessel connections form in the placenta and allow blood to flow unevenly between the babies. We were sent to St. Louis a few weeks later and it was confirmed. We were told that our boys would probably not survive.
The best option we had was surgery. The hope was that Jace had at least 15% of the placenta. They were not optimistic about Jace–he was just so much smaller than Parker. We had the surgery the following morning at 22 weeks pregnant, and it was terrifying. The surgery was supposed to take two hours, but ended up taking seven. The doctor came in afterwards and told us that Jace actually had more placenta than Parker, and they had stopped counting shared vessels at 45. The surgery was a success. We were told that Jace would probably continue to be smaller than Parker, but that he had a chance now. We went home the next day, and I was on bed rest for about a week.
We were still being monitored weekly, and Jace started to catch up to his brother. At 28 weeks, my water broke and we were admitted to Willow Creek Hospital. I was on bed rest for two weeks. Those two weeks were so hard, but, looking back, it was probably the easiest part of this journey for me. I had amazing nurses, who took great care of me. I highly recommend having your babies at Willow Creek!
We delivered the boys on March 6th at 30 weeks. Jace was born first, which was a big surprise, because he had been baby ‘B’ until he was born, weighing 2lbs 2oz. Parker came 7 minutes later, weighing 3lbs 6oz. Our NICU stay was hard and long, but the nurses and doctors were incredible. They really became like family to us. They saw us at our worst, and loved us through it. They cried with us and laughed with us, and even celebrated our little victories along the way. We are still in touch, and a couple of nurses have even babysat the boys for us after Jace came home.
Parker spent a little over seven weeks in the NICU, and came home in April. He is doing well, though he has a small Atrial Septal Defect (a “hole” in the wall that separates the top two chambers of the heart, which allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart) and is being monitored by cardiologists at Children’s in Little Rock. As of now, he does not need surgery, and if he does in the future, he will likely be around three or four years old. It will not have to be open heart surgery.
Jace was diagnosed with a large Ventricular Septal Defect, and has had a much harder time. VSD is a hole in the wall separating the two lower chambers of the heart. In normal development, the wall between the chambers closes before the fetus is born, so that, by birth, oxygen-rich blood is kept from mixing with the oxygen-poor blood. When the hole does not close, it may cause higher pressure in the heart or reduced oxygen to the body. Over time, it may cause damage to the lungs. At 8 weeks old, Jace got a bacterial infection. He crashed and had to be placed on the ventilator. Two days later he crashed again, and at that point his doctor felt it was time for him to be moved to Arkansas Children’s Hospital for his first open heart surgery. On May 11th, he had surgery to close a small defect, and also place a band around his pulmonary artery in the hopes it would stop his lungs from being flooded with fluid. He did really well, and eventually came home after 100 days in the hospital. We were home for about 15 days, then were taken by Angel One back to the CVICU and spent 3 weeks there. We worked on feeding and figuring out swallowing issues. We were home for 13 days, and were transported by ambulance back to Children’s on July 31st. This time, we will not be leaving until he has his full repair and will possibly be home by Christmas. During this stay, Jace aspirated and developed pneumonia. He was intubated for 22 days. He was diagnosed with Pulmonary Hypertension (PH), which is when you have high blood pressure in the arteries to your lungs, and will have his full repair on September 20th, barring any further complications. Because of PH, his heart has to work harder to pump the blood through. Over time, it can lead to heart failure. Jace has only been home a total of 4 weeks in the six months since he was born. The boys turned six months old this month, and we celebrated at the hospital by bringing cupcakes to all the nurses. I am currently living in Little Rock with Jace at Children’s Hospital, in the Cardiovascular Intensive Care Unit. Rik is home with our older two, and Parker goes back and forth between us.
In the midst of our NICU stay, both boys were diagnosed with Mosaic Trisomy 21. This is a rare form of Down’s Syndrome. We had no suspicions during pregnancy, and were pretty surprised, since our genetic testing all came back negative. We found out the day Jace crashed and was fighting for his life, and two weeks later we found out about Parker. From our research, mosaicism is not very common, and affects the cells in the body differently. With full Trisomy 21, every cell in your body has three copies of the 21st chromosome, instead of the normal two. With mosaicism, only some cells are affected. Parker has around 10% of his cells affected. Jace has around 30%. We have learned that there are adults who find out they have mosaicism much later in life, and have never known it, or had any problems. So, we have no idea how it will affect the boys throughout life. Jace seems to have the most health issues, where Parker has very little issues right now. Our genetics doctor will be doing more extensive testing at some point to help us know a little more specifically how the boys are affected. They may have delays, or they may not. We just won’t know, and we may not even know if those delays are related to mosaicism or just them being premature.
We are so blessed by our miracle boys. They have completed our family in such an incredible way. They have shown us the power of prayer. Every single prayer that has been answered over the last year has built our faith more and more. They are both so brave. They have fought, and are still fighting, hard battles. The boys’ story has reached people all over the world. We have prayers going up from Jerusalem, Denmark, Spain, Germany, and Belgium. People have seen their story on Facebook, and have shared it so many times. It’s such an amazing thing to know they are so covered in prayers. Jace is so small, and has simply lain in his hospital bed for the last six months, but he has touched so many lives. These boys have an amazing story already, and it is just starting!
This year has been a long, hard journey, and it’s not over yet. We are looking forward to Jace coming home after his next surgery. We are hopeful that this will be the end of our needs for surgery. Our family has missed being together, and we cannot wait to be together again. We are so grateful for all the love and support we have received from not only friends and family, but people we have never met. The Lord has truly shown his love for us through this whole process, and we are so grateful for everything He has done in our family.