Weston Christopher Remkes
The beginning of Weston starts before he was even created. Chris & I were married in the fall of 2008 and while on our honeymoon in April 2009 we decided that we wanted to start our family. We already had a family started with us and our four 4-legged kids, why not add a couple of 2-legged kids. Having a family may seem like a simple task, but for us, it wasn’t easy.
When we arrived home from our honeymoon we went to our first doctor’s appointment to discuss starting our family. I knew that I already had a fertility issue and would need to start the proper medications to help the process along. Chris decided he wanted to be tested before I was put on any medications to help get pregnant. Call if fate, or coincidence, but that was the right choice to make. Chris had a fertility issue also. Now we were faced with accepting the possibility of not having any biological children of our own.
We were referred to the University of Utah’s endocrinology doctor’s to talk about what our options were. On our way down we discussed adoption, and we both agreed that we were open to it. When we arrived at the endocrinology department we sat with Dr. Gibson to talk about our fertility issues. He informed us that with Chris’s fertility issue we would still be able to have children of our own, but we would have to do Invitro Fertilization or IVF to make it work. The cost was expensive, but to us, worth every penny.
By December of 2009 we had our finances in place and we began our IVF treatment. It took two months to complete the cycle (February 2010), but in the end, it had worked. We were pregnant with our first child. We were completely amazed. We implanted one embryo the first time and it took! The chance for a success was slim, but we had won. We also were able to freeze 6 embryos to use in the future.
The excitement that Chris & I had was unstoppable! We didn’t hesitate about telling our family & friends. We also started making plans for our future child, which we thought for sure was a girl. We started discussing (really arguing) about names and what to do in the nursery. We got the shock of our lives in June 2010 when we were told our baby was a boy! A BOY! That changed everything!! Chris was beaming and started making plans about hunting, guns and fishing. I on the other hand started making plans about our son playing soccer, going to the NHRA drag races and Disneyland every year! We couldn’t be stopped!
Our pregnancy was fairly simple. I was told to take it easy and was placed on “couch potato rest” a lot. We say the perinatologist five different times throughout the second and third trimester to make sure our baby boy was growing properly and the placenta was doing ok. Becoming pregnant through IVF can be compared to defeating Mother Nature and we wanted to make sure Mother Nature wouldn’t kick us back for going over her head. We also had stress tests done each week in the last trimester to monitor the baby’s heart rate and any contractors. It all appeared normal.
On Saturday October 30 at 9pm my water broke. We headed up to the hospital and we were ready to welcome our baby boy into the world. I was excited to have the baby on my favorite holiday, Halloween. The labor and delivery was great and there were hardly any problems. The problem we encountered was after Weston was born at 4:46am Halloween morning. We were all excited, our baby was here. There were tears and cheers and total excitement, until the labor and delivery nurse noticed that Weston was very pale. A NICU nurse was called and they started to check his vitals. That is when Chris & I looked at each other and knew that something was not right.
Weston was taking to the NICU and the confirmed that his blood oxygen level was low and something was wrong. Within an hour, our pediatrician was in our room telling us that our son had a heart defect and would be transferred to Primary Children’s Hospital. Our hearts broke. We had fought to have this little boy and we would fight to keep him here; we also knew that Weston would do the same.
We went to the NICU to see Weston and talk to the neonatologist about Weston’s heart defect. We were told he had “Transposition of the Great Arteries”. In English, his Pulmonary Artery and Aorta were switched and his heart was not recycling the blue blood and red blood properly. They had started a medication called, PGE to help keep the naturally occurring duct between his aorta and pulmonary artery open allowing the blood to mix. This would help his body receive oxygenated blood temporarily keeping him alive. Weston would need open heart surgery to place the arteries in the proper location, without this surgery he would die from lack of oxygen.
About 2 hours later, Weston was transferred to Primary Children’s. Boy was that a site to see. There was an attending doctor, several cardiologists, two fellow doctors, respiratory therapists, and nurses all gathered around his bed. We had all the best eyes in the state on our little boy, assessing his situation and giving him all the care he needed. Because of Weston’s condition, he was having a really hard time exchanging oxygen with carbon dioxide in what little flow he had. So the doctors decided to place him on the ventilator. Our baby boy who has hardly made a sound since birth was now temporarily mute.
Now that Weston was stabilized Chris spoke with the nurses and cardiologist to see what their plan was. With his oxygen levels stable they were anticipating surgery within the week but more likely on Friday. However, should his levels drop they may have to enlarge a hole in the upper atria in his heart to allow more blood mixture. A process called “Rashkind Balloon Atrial Septostomy” Using a heart catheter they transverse the Septum (middle of the heart) and then inflate a balloon and pull it back through the hole enlarging it.
Chris drove back to Ogden to stay the night with me since I was going to be discharged the next day while Chris’ family stayed the night to keep an eye on Weston. That was a hard decision, but we wanted to drive down to Primary Children’s together. Later that night we received a call that his levels had dropped and they would have to enlarge the hole in his heart. Luckily the process was quick and worked really well. We were on pins and needles until we received the call that the procedure was done and he was good.
Once we arrived to Primary Children’s the next day Weston was resting comfortably with his own personal nurse taking care of him. He was so spoiled! Weston was in the Cardiac Intensive Care Unit, also known as the CICU, where the critical patients get one nurse who watches only them. That was so comforting to know that no matter what happened, there was a nurse with no other patients who could give immediate care.
As we waited for the day of surgery the doctors kept checking up on him and taking echo cardiograms to figure out the anatomy of his coronary arteries. The coronary arteries grow from the aorta. Since his aorta was switched at birth, the coronary arteries needed to be switched as well. It was extremely hard to decipher how his arteries grew so they ended up having do another heart catheter where they inject dye into the blood and take a picture of exactly what his arteries looked like. During his heart catheter he had a momentary heart block. He became arrhythmic and the upper part of his heart was not communicating with the lower. Luckily this only lasted a few minutes and he was back on track.
Weston’s coronary arteries looked fantastic and we were on for surgery that Friday. Now we play the waiting game as we watch Weston’s stats go up and down. One minute his oxygen level is dropping. Another it is too high. Then he has a fit and clamps down on his tube and all the alarms go off. Other times he is chilling out in his bed soaking up the dopamine keeping his blood pressure stable. We learned so much in our stay at Primary Children’s. We just wish it was under different circumstances.
As the days rolled by, waiting for surgery, we were lucky enough to have my Aunt and Uncle bring their trailer where we could place it in the parking lot and get some rest. This was our saving grace. The only way we kept our sanity. We would spend hours with Weston then go get some sleep, then hours with Weston, so on and so forth. We lived out of that trailer and hospital the duration of Weston’s stay.
The night before the big day arrived and we had our consultation with the surgeon. We were told the risks and possible complications. It was a simple arterial switch. But with surgery comes an 8% chance of death, 2% chance of arrhythmia, 2% chance of bleeding, 20% to 30% chance he would have a leaky valve. That was enough to scare the crap out of us! He was going to be put on by-pass and he would have severe swelling so they would probably not be able to even close his chest for a couple of days. Well we don’t have a choice. So we went in as optimistic as possible.
After our consultation with the surgeon, we were able to hold Weston for the first time since his birth. We were even able to give him a bath! We spent most of the night in his room just spending time with our son. He was about to embark on another big journey in his young life.
Then it was time and we followed Weston into the operating room. We told him we loved him and headed to the waiting room, where minutes are hours and hours are days! All of our family came up to support us as we waited for the 4 to 5 hour surgery. Every hour the nurse practitioner came out and gave us an update. They have made the incision. They have put him on bypass. They have completed the pulmonary artery. They are done with the aorta. They are letting him warm up. He is off by pass and the surgeon will see you shortly!
He made it! He was doing well and we could see him soon. I cannot explain the amount of relief we felt! We went into his room and saw that our little boy had transformed into a cabbage patch kid doll! He was so swollen! He had tubes and wires coming out of all sorts of places. There were four drainage tubes, one for his heart, two for his lungs, and one for his abdomen. He also had two sets of pacer wires and two atrial lines that delivered medicine right to his heart. He also had a little bandage that looked like the top of a shoe where it laced up and held his chest closed. He was on pain meds, lasix to help him pee off all the fluid, dopamine to control his blood pressure, blood thinners, and baby aspirin.
The next day you could see a noticeable difference in his swelling and the doctors were able to close his chest on Sunday. A full day earlier than they anticipated! Now came our new routine. In the morning he would get a chest x-ray. Doctors make their rounds and check up on him. Work on weaning him off the ventilator. Wean him off the pain medications and dopamine. Sounds easy doesn’t it? Boy it wasn’t.
It was a slow process over the next week. First the ventilator came off. Then we were noticing fewer and fewer medications being pumped into his little body. Then three of the tubes were removed. We were getting closer. One more tube and the atrial lines and we can hold him again. Finally the last tube, the atrial lines, and the pacer wires were removed! We were moving on up. To the third floor that is!
The third floor brought us a couple of setbacks. Weston still wasn’t eating and we were fighting a case of withdrawals from the pain medications. We were put on Methadone to help wean him off the narcotics and we slowly tried to feed him orally. That is of course after we had a swallow study to make sure he did not let any of his formula go down his lungs. He did not take the bottle well and the formula he was eating seemed to upset his stomach. We changed his formula which really helped out a lot and stopped his spitting up.
We still had daily chest x-rays which showed his lungs were clearing up from the fluid that had been on them since birth. He was being weaned off of his oxygen and we were able to get him down from 0.5 liters to 0.06 liters. We ended up moving to a larger room after a few days and little Weston continued to get stronger and eat more.
Finally we were given the okay to go home. It was bitter sweet. We made a lot of friends at the hospital. From the nurses to the doctors and the other little patients who roamed the halls. We had enough hospital cafeteria food and were ready to take little Weston home to the nursery we worked so hard to make for him. Out to the car and on our way home; 22 days old and strong as ever on his way home with Mama and Papa.
