While I found no words of my own to describe the following story, a particular song comes to mind. The lyrics are "Our God is greater, Our God is stronger, God you are higher than any other, Our God is healer, Awesome in power, Our God, Our God." Please read as Emily pours her heart into telling the story of an amazing little boy named Sawyer! ♥ Megan
A Perfect Broken Heart: Sawyer's Story (So Far)
This story is true and very long. I feel with all my heart the Lord wants it to be shared....
My husband Dustin and I had been married for three years when we decided we were ready to start our family together and have ourselves a little one. This was a big decision to make and we realized that, so we entered with prayer and waited for God's timing. We wanted this baby to be loved, nurtured, and most of all raised in a Christian home. We were overwhelmed, to say the least when we found out we were expecting. I can still remember the butterflies in my tummy as I waited on the test to show, and the look on Dustin's face when he found out! We felt we were ready to take this responsibility and when it happened we thought God saw us ready as well. Unable to be happier at the time, we started preparing! The fun, excitement, and joy of picking out things for your baby can only be known by experience. I still remember the first time I felt Sawyer move, I couldn't wait to get home so Dustin could feel it too!
It wasnt long before Sawyer started showing a personality all his own. I must say, he was a very hyper peanut from the very beginning. Due to his activity, it always took more than just one ultrasound visit to get all his measurements and pictures they needed to assure us he was healthy. We knew from the beginning that Sawyer was going to be on the move. We couldn't wait to see him! We had always called Sawyer our miracle from God, but we had no idea of the miracles God had in store for us and what a complete blessing Sawyer would be to everyone.
I was around 22 weeks pregnant and still working, eventhough my mind was anywhere but work. We had recently had 4D ultrasounds and I couldn't keep my eyes off Sawyer's chunky cheeks! One day when I was working I got a call that no expectant mother wants to receive. They wanted to let me know they had been reviewing some of the ultrasound images and they were concerned that something could be wrong with Sawyer. When I hung up the phone, my whole body felt numb. I kept thinking it must have been a dream. Then came the fear, along with the tears. I broke down and ran outside calling my family to pray. Then I made my way to the restroom where I hit my knees and poured my heart out to the Lord, begging for help. At the time, I had no idea what else to ask for... I didn't even know what was wrong but I knew God knew exactly what was needed and He was able and would see us through.
Time was passing so slowly that it seemed as though it were standing still as we waited for our appointment with a specialist at UT for a diagnostic ultrasound. I knew in my heart we were being surrounded by prayers, still yet, it didn't take away the fear for God hadn't assured me that nothing was wrong and Sawyer would be OK. I knew that if something were indeed wrong, God was able to heal. That, however, was not the answer God had given me. He told me that He would be there with me and Sawyer.
After what seemed a lifetime of waiting, we finally made it to UT for our ultrasound. I remember my palms sweating as I sat down and filled out the mountain of paperwork. The ultrasound showed that Sawyer has a cleft lip and possible palate. Knowing this wasn't anything life-threatening and was mainly cosmetic really put my mind at ease. Even after all the appointments were made and they informed me that some cleft babies would require a trachea due to trouble breathing. I was glad they had taken the time out to talk and prepare us for the "could happens", but in all honesty, it's hard to prepare yourself for something you have yet to experience. We once again turned to God for guidance and for his help to prepare us for Sawyer's arrival. We then continues to prepare by researching, meeting with cleft teams of doctors, and purchasing special bottles for babies with clefts. God did his job by placing it on someone's heart to have special prayer at church as Sawyer's due date drew near. It is hard to explain but I had a peace about everything. Even without knowing what our future would hold.... still I found peace. We knew that with God at our side, we could make it through this.
On April 20,2010, 9:24pm, I gave birth to the most precious baby boy of all time! Sawyer Kline Singleton finally made his arrival at Morristown Hamblem Hospital! I can't describe the joy that was felt as Dr. Clark placed that perfect little angel on my chest! Finally getting to look into his eyes... well eye, he only opened one for us. Still holding him melted all my feared I had been keeping inside.After holding him for what seemed like seconds the nurses took Sawyer aside where a team of doctors including his pediatrician, Dr. Wilkinson, were waiting to evaluate Sawyer and to make sure his breathing was ok. When they told me everything checked out ok I was on cloud 9! Dr. Wilkinson's only concern was that Sawyer's color seemed to be blue when compared to other newborns. He decided to be safe and informed us that he would stay overnight with Sawyer in the nursey to monitor and periodically reevaluate Sawyer's condition. Although I wanted Sawyer with me, I had great confidence in Dr. Wilkinson and with him saying it was best, we agreed.
It was difficult to sleep without Sawyer close by. I couldn't wait to get home so I could hold and care for Sawyer myself. But with the news we were about to receive, I didn't know how long that would be. Dr. Wilkinson came in bright and early to let us know Sawyer was ok, but had developed a heart murmur overnight and was having trouble keeping his oxygen stats at normal range. He told us we shouldn't worry, sometimes babies have heart murmurs that dissapear on their own. However, he wasn't a doctor that liked taking risks. He wanted to have Sawyer transferred to Knoxville Children's Hospital where he would get his heart checked by a cardiologist. So we signed the paperwork and waited for transport team to come. I held strong while Dr. Wilkinson was in the room, but as soon as he left, the tears came pouring. I couldn't imagine Sawyer going to Knoxville alone. It was heartbreaking for me to think there wouldn't be one voice e would recognize! What if he got scared? Luckily my OB decided the stress of me being apart form Sawyer would be harder on my body that leaving the hospital hours after giving birth so he discharged me early so I could go to Knoxville and be with Sawyer.
The trip to Knoxville seemed to take forever! It was tough seeing that empty car seat in the back of the car. When we did make it, we made our way to the NICU where we were told we could find Sawyer. The staff buzzed us through and we scrubbed in, put on gowns and the nurses escorted us to Sawyer's spot. I noticed the nurses had a strange look in their eyes. It almost seemed sad... as though they felt sorry for us. At the time, I couldn't understand, but deep down it made me feel sick. Have you ever been in that position where you could see someone's words they couldn't speak just by looking into their eyes? That's exactly how I felt looking at these nurses. After briefly looking at Sawyer in his incubator, the nurses took us back to a consult room where two doctors were waiting to speak with us. I didn't know much but I do know that your usual good news reports don't come from inside a consult room. The steps were short and the halls so very long, and with each step we took I could feel the knot in my stomach getting stronger and stronger; my fear greater and greater. We never expected the news we recieved.
First, they began to discuss Sawyer's cleft lip/palate (which we were prepared for). They told us they believed it was linked to some other issues they had found. Needless to say, we weren't prepared for the news. The next thing we were told was they believed Sawyer was blind, that his eyes didn't fully develop during pregnancy, and that his left eye had a coloboma. Then they explained to us that they weren't sure if he would be able to hear. The cleft sometimes affected this as well. Still in our conversation, I thought to myself everything was alright. People raise blind children all the time! Who cares if he can hear really? I could be both his eyes and ears! I just wanted to keep him, however the Lord saw fit. He was still my perfect little boy! Then there is his heart.
Heart? What coud be wrong with his heart? What did this mean? Would he still be ok? These were the questions flooding my mind. He had Tricuspid Atresia with a limited VSD. More specifically Hypoplastic Right Heart Syndrome, along with two holes in his heart. One of the holes is in every child's heart but begins to close after birth. This all meant that Sawyer's right ventricle was underdeveloped, leaving it small and incapable of performing its job. All these problems were causing Sawyer's red and blue blood cells to mix, not allowing the blood to pass by the lungs. This meant that his body was sending blood without oxygen throughout the body causing unsafe levels of oxygen. Even though this was a major complication, still I thought "FIX IT".... heart surgery is a common thing and surely it could be repaired!!! Right? Then Dustin and I would act as Sawyer's eyes and ears to the world. The doctors explained that there was a series of three heart surgeries that could give Sawyer's heart the ability to function as a healthy heart. We then realized that the doctors weren't quite finished with the diagnosis. For as soon as they had given us that thread of hope... they cut it when they refused surgery. The thing was.... they believed Sawyer's multiple issues to be linked to a genetic disorder called Trisome 13. I had no idea what Trisome 13 was and we began to question why they wouldn't do the surgeries to help Sawyer's heart function properly. They explained Trisome 13 was rare and was not compatible with life. One with this disease could not survive. Life expectancy was 3 months to a year...
What? 3 months to a year?.... I couldn't believe what I was hearing! They still continued with Sawyer's case and condition... He would have heart failure in 3 days...
Both Dustin and I were in tears as we tried to comprehend what we had been told. We returned to Sawyer's bed in the NICU nursery, where both our mothers were waiting (eager grandmas). We knew how badly we needed to tell them the news, but we couldn't seem to find the words. I mean, how do you tell two grandmas that the grandbaby they have been anxiously awaiting for 9 months, wouldn't be here in three days? The staff must have known we couldn't speak and came over to explain their findings once again. I must say, hearing those words the second time was no easier and only made things more real. For us, it seemed all was lost. All that hope, the future, our plans.... vanished in that very moment. We had no idea what to do.
After a few minutes of watching Sawyer lie in the incubator, they decided in his condition, for our sake, it would be best for privacy. They placed Sawyer in an isolated room to himself and papered up the windows. They told us that in this situation, they wouldn't limit our visitors or visitation time. We were simply told to spend as much time with him as possible. I found myself searching, even though it was impossible to find, for that one person, a nurse or doctor, who still seemed to have a glimmer of hope for little Sawyer. They began testing almost immediatly to confirm their diagnosis of Trisome 13. However the results would take at least 4 days even if they were rushed, and they didn't expect him to last that long.
The next day they sent in the cardiologist to further explain and discuss the plan for Sawyer's care. He informed us of how he would like to medicate him in attempts of keeping him comfortable until his body no longer fought for life. Dustin and I did not like this plan. We couldn't see throwing in the towel and giving up on him.When we asked of other options, such as those that would allow us to keep him longer, he replied, "I think you need to come to the realization of the quality of life that your child will have." The conversation ended. Once again any hope we had come up with was crushed by those words. Later that night, Dustin told the nurse that we didn't care for the doctor we had spoken with earlier because of his negativity and how he spoke as though all hope was lost. She tried to explain how he was only trying to prevent us from having false hope. Dustin immediately replied with, "I SERVE A GREAT BIG GOD" with tears in his eyes. We then talked with the nurse of he Bible and how Lazarus was raised and all the other miracles God performed. It was then I KNEW deep down in my heart that Sawyer wasn't beyond GOD'S ability to heal!
As the next few days passed we had many visitors to see Sawyer. Everyone back home let us know that not only our church but every church around was praying for him. Prayers were sent up one by one each and every day. Cards were sent and calls were made some from out of state. Friday was day 3, it came and passed with Sawyer still hanging on. The next morning we were told Sawyer tested negative for Trisome 13!! Needless to say, we were shouting down the NICU! Nurses even had tears of joy in their eyes as they spoke with us of how they had been praying! The nurse my husband had spoken with said all she could think of were his words "I serve a BIG GOD!" Although he wasn't fully healed we knew this meant the doctors would proceed with the surgery! My heart still overflows with joy when I think back to this day!
It wasn't but another day or two they moved Sawyer out of isolation and began feeding him through NG Tube and some by bottle. He was a new baby, he loved his food! They the eye doctor stopped by examined Sawyer's eyes and looked at us with disappointment on his face and told us he wouldn't have very good vision but would be able to see. We were tickled!!! Just knowing he could see! It wasn't long either before we knew he could hear because he responded to Mommy and Daddy! Even though we were having life in the hospital we were blessed to have him at all!
We were in our CPR class when the doctor and primary nurse slipped in to tell us that Sawyer's oxygen was decreasing quite often and he wasn't snapping back like before. We were told to get our things together because if we waited much longer, they would not be able to transport him if he lost stabilization. Once again the fear hit us like a ton of bricks. We knew nothing more that we could do except to pray to The One who was in control. They sent Angel, the NICU aircraft, to come fly Sawyer to Vanderbilt where he would undergo his first open heart surgery. Since he traveled by air and we drove, Sawyer arrived at the hospital long before we did. It was so hard to be separated from him yet again, but I knew we were doing what was best for Sawyer. After a few long and stressful days of managing Sawyer's extremely low oxygen levels, he was taken into the OR for his first heart surgery.
While in the waiting room, we helplessly waited upon each phone call for an update on Sawyer's condition. The hours pass so slowly. My heart was beating so fast when the nurse came to tell us that the surgeon would be out shortly to let us know how everything had went. Dr. Bichell finally came and told us that everything had went just as planned without any complications and that we would be able to go to the recovery room and see him shortly.
The next few days were nothing short of emotional rollercoasters at every turn. A few nights after the surgery when things were looking so good, we got bad news. Dustin and I were in our sleep room down the hall from where Sawyer's room when the phone rang. It was his nurse asking us to meet her at the door. We had no idea the news that we were about to recieve. Instead of taking us to Sawyer's room, she led us back into a quiet conference room. When we sat down I could see the nurse's hands shaking. She said,"There has been a change in Sawyer's condition, and it's not looking good. His heart has stopped, they are currently preforming CPR trying to restart it, but so far they have been unsuccessful." Then they left the room. I grabbed my phone and sent one text message to my mom that said, Call Everyone! Sawyer's heart stopped -pray! 20 minutes later the nurse returned and told us that his heart was still weak, but it was beating. Because his body was under so much stress and his incision had opened back up from the compressions, we were forced to go back to the sleep room without seeing Sawyer. However, only minutes after we got back, we got another call that his heart stopped again and that it wasn't a good sign. However, through prayers of God's people, Sawyer's heart unexpectedly began to beat! We went to sleep that night, not knowing what to expect, but knowing God had given us a peace.
Over the next few weeks with some small complications, Sawyer began to recover. He had a minor brain and adrenal hemorrhage from the cardiac arrest that corrected themselves. The ventilator, oxygen, chest tubes, ivs, etc. were all removed one by one. And on May 19, 2010 we finally took little Sawyer home for the first time. He had a ng tube and an apnea monitor, but to us, life couldn't have been more perfect!
This is all I have completed for now, I will post the rest of Sawyer's story soon. Thanks for reading... thank God again for what He has done!!
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