I’m so pleased to introduce you to our second son, Redmond Samuel Wyse. He has had us on quite a roller coaster ride for these last 23 days, some of which you may already know from my public Facebook posts. He was born on Wednesday, March 1st, 2017, at 4:21 p.m. in our local hospital. He weighed 8 pounds, 12 ounces, and was 20 1/2″ long. He was born just before 38 weeks, via an unplanned c-section.
At around 37 weeks into my pregnancy, Redmond shifted from a very active baby to not moving much at all. The midwife and OB had been supervising my pregnancy closely because of gestational diabetes. We had some warnings that his heart might not be exactly as it should be, but repeated ultrasounds showed no reason for concern.
Redmond moved less and less that week, which I attributed to his growing size and getting squished in there. But Wednesday morning he stopped moving all together. I tried everything to get him to move, then decided we needed to get to the hospital right away. I began to panic, afraid I had waited too long.
As soon as we arrived at the hospital, the nurse pulled out the doppler and we heard his heart beating. I was so relieved. Although his heart was beating, they soon realized he was in distress and a c-section needed to happen right away. I was able to remain calm until he was out, but then I knew something was very wrong. They didn’t let me see him and suddenly my world turned upside down. The very wise anesthesiologist gave me something for anxiety. I sent Rick to be with Redmond while they worked on him and I slept in the recovery room.
That night, Redmond was taken to a larger hospital with a Neonatal Intensive Care Unit (NICU). He’d been put on a ventilator and I was only able to see him inside of a closed travel crib for a few moments. Too medicated to fully grasp what was happening, I went back to sleep. I was aware that there was a problem, but felt completely numb. It’s strange to write those words, but I believe that was actually the very thing I needed at that time. How could I have handled the weight of what was happening to my son, totally unable to be with him or do anything to help?
The next day we were told that Redmond was the sickest baby in the NICU and they were not sure what to do with him. I was released from the hospital less than 24 hours after my c-section, driven home by a wonderful friend who is also a nurse at the hospital, and was soon on my way to see my baby about an hour away. My sister dropped everything that day, got on a plane from the Carolinas, and actually beat me to the NICU. I am so grateful for her and all she did over the next several days to keep me calm and focused, asking intelligent questions when I could think of nothing, and buying a large quantity of snacks (and supplies)!
A few days later, Redmond was transferred to a larger hospital about 80 miles from our home. The hospital he’d been in was excellent, but had done everything they could do for him. They felt like a treatment called ECMO (for more info, watch a video about it here: http://www.mottchildren.org/conditions-treatments/ecmo) was what he might need. Redmond had several heart issues and his lungs weren’t working like they were supposed to work. ECMO, a heart/lung bypass, would allow them to rest and have some time to start working. The photo below is what his room looked like with the ECMO machine, ventilator, and other equipment he needed.
When he was just 3 days old, he was put on ECMO. We had our older children, Eliana and Charlie, come up to the hospital with their grandparents to meet him. We weren’t sure if it was a good idea to let them see him with so many things attached to him, but decided they needed to see their brother alive. It was a terrible thing to have to decide, but they handled it very well. We allowed them to briefly see and touch him, then we took them into a play area in the hospital. While they ran and played, I sat in a wheelchair and cried. I cried because this short period of time was all I had with them and I couldn’t even play with them (c-section recovery). I cried because my baby was in another room fighting for his life. I cried because I was hormonal and exhausted.
Redmond was on ECMO for six days. They were terrible days, full of ups and downs, alarms going off constantly, no fewer than 2 people in his room watching him at all times. He had two large tubes in his neck and was medically paralyzed. His chest didn’t rise and fall, he was puffy and discolored, and he looked like a lifeless doll. Often there were 4 people watching him – 2 nurses and 2 ECMO specialists. There was barely space in his room for us. We often walked out of the room to sit on nearby chairs and get a break from the sound of the alarms.
On March 7, when he was just 6 days old, we were startled by an early morning phone call from the nurse practitioner. Overnight, Redmond had developed a tension pneumothorax, or an air pocket outside of his lung. It was causing his heart and other organs to be pushed off to the side, which interfered with ECMO. The standard treatment is a simple chest tube, but that was extremely risky for him because he was on blood thinners. A chest tube brought with it the risk of internal and external bleeding. Without the chest tube, ECMO couldn’t continue successfully. That kind of uncontrollable bleeding didn’t bode well for him either.
As the medical team discussed how to handle it, I prayed with all my might. “Please God, give them wisdom, creativity, and knowledge. Help them to find a way where there seems to be no way.” God chose to speak through a pediatric surgeon. He said, “When we don’t know what to do, sometimes it’s best just to wait.” They all agreed to give Redmond 6 hours, repeat the chest x-ray, then do the chest tube if necessary. They made a plan for the chest tube and continued on their way. I called on everyone I knew to pray for that 2:00 p.m. deadline. Please, God, give us a miracle.
At 2:00 p.m., the chest x-ray was repeated. Our pastors had come up to be with us while we waited for the news. As I sat on the edge of a bright orange chair outside his room, the nurse practitioner walked up and told me the news. “The pneumothorax is gone. His heart and everything else have lined back up correctly. No chest tube is needed.”
I almost fell off that chair with gratitude. Sobs of relief came rushing out of me. God had answered our prayers with a miracle. The nurse practitioner, who has never mentioned God to me, agreed that it was a miracle. She had never seen anything like it in 21 years of working in the NICU. That day Redmond turned a corner. Before that day, ECMO specialists, nurses, and doctors were constantly confounded about him. He was difficult and touchy. Anytime they needed to move him for any reason, alarms went off. After that day, the reports changed. He was improving. He was improving more. He was improving faster than they expected. Blood cultures, labs, and other tests looking for other problems were coming back negative.
When he was 9 days old, he was able to come off ECMO and tolerated it well. I held him for the first time when he was 10 days old. He had so many things attached to him that it took 2 nurses and a respiratory therapist to put him in my lap. When he was 15 days old, he was able to get the ventilator out. When he was 16 days old, I heard the amazing sound of his cry for the first time. When he was 22 days old, he was completely weaned off IV medicines and his PICC line came out, he got his Foley catheter out, and I was able to pick him up by myself to hold him. When he was 23 days old, he was switched from a c-pap breathing ram (forced air) to nasal cannulas (supplemental oxygen), which is one step away from breathing on his own.
We are looking forward to how he reaches the next milestones – coming completely off of oxygen and learning to drink from a bottle.
We have seen so many miracles along the way. I’ve made my Facebook posts about him all public, so I won’t rehash every one of them here. But we stand in awe of God and the way He has answered our prayers.
Rick and I have been mostly separated from Eliana and Charlie since the day Redmond was born. We’ve been home a few times, very briefly, and are extremely grateful for the ability we have to stay with our baby. Rick’s parents and our amazing babysitter have provided so much love, support, and care for them that sometimes we wonder if they even miss us. They’ve been able to keep to their regular schedule and come up to visit us several times. We hate to be away from them and miss them terribly, but are so thankful for the excellent support we have at home.
We’ve been staying at The Ronald McDonald House, which has been a tremendous blessing. We will be lifelong supporters of their charity because of way they’ve helped us. Not only do they provide housing for families whose children are in the hospital far from home, but there’s typically a meal provided every day, as well as countless other grace-filled gestures.
Redmond has some things that will continue to challenge us as he grows. We’ve been told he has a ventricular septal defect (VSD), or a hole between the lower chambers of his heart. It’s possible that it could close on it’s own, be something he’s able to live with, or need to be repaired surgically in the future. We are praying earnestly for God to close that hole without the need for surgery. The hole is a complication of Down Syndrome, or Trisomy 21. This diagnosis came as a surprise to us, as none of the tests we had done before he was born suggested it. It took a while for the chromosome test to be completed, but we were told it was a possibility within an hour of his birth.
Redmond (wise protector) Samuel (God has heard) Wyse will not be defined by this diagnosis. Named in honor of his paternal grandfather, Samuel Wenger, his name means “God has heard and blessed us with a wise protector.” We chose this name before we knew anything about him and believe God has a purpose and a mission for his life. He will be a mighty man of God, given every opportunity to succeed, and supported through every possible path he may take. We have prayed for him since before he was born, asking God to give us another child, and have believed that he would bring “life and health, joy and peace.” He is our great blessing and we praise God for answering our prayers. He has already exceeded the expectations of our doctors, and we look forward to seeing all the ways he exceeds the expectations of the rest of the world.