This was how he ate from Monday morning until Wednesday night. These feeds stopped at midnight, and then he woke me up about every hour because he was so hungry. I held him so much the few days I had with him leading up to surgery, and I stayed up until about 11pm holding him. Then when he woke up at around 4 or 5 in the morning that Thursday morning, I just stayed up so I could hold him.
Around 7 his visitors started rolling in. Great grandparents, grandparents, his pediatrician, our pastor, and a whole lot of friends came to pray right before he went in for surgery. His pediatrician got down on his knees and lead the prayer. I was holding Jace, and sitting in this chair completely surrounded by people who love our family. We prayed until the surgeon came to talk with us. It was so beautiful, there wasn't a dry eye in the room.
Jonathan and I talked with one of the two pediatric cardiologist surgeons that would be working together on Jace's heart. He re explained the process of putting a shunt in to restrict blood flow to the lungs, sewing up his pulmonary artery, and then they also removed the septum wall in Jace's heart between the two atrium.
The understanding I had was that they do these things all the time, and they weren't in the least bit concerned about complications. I wish I had asked the hard questions that float into every parents minds when something so scary happens... is my baby going to make it? What are the risk factors? What kind of complications are possible?
Hope is a funny thing. When you have hope, it seems ridiculous to ask the hard questions. I know a lot of Christians who say the things like praying in faith for rain means you carry your umbrella, prepared for a miracle. I know God heals, I have seen it first hand. So for me, I truly believe that if God wanted to heal Jace, it would have happened. I don't know why, but I know it is for a purpose that we have to walk through this. I was trying to have faith that he would be healed, but since I really wasn't getting the sense that God was definitely going to heal Jace, I tried to prepare by asking all the questions. I don't think it ever crossed my mind that it was possible he might not survive the surgery. Obviously I knew that it was a risk, but it always is in a surgery and it usually turns out fine. I figured that if he was in my care I might miss something and he might die, but I guess I thought (and the surgeons convinced me) that these people could handle his situation, no problem. So in my mind we were just waiting for a long hard healing process.
Our nurse suited up, had us kiss Jace, and let us walk him to the operating room for one more kiss. Then we cried before coming back up to join our prayer team in the lobby of the picu.
Every hour or two there was a staff member of the hospital that would come update us on the surgery. At first it was to tell us he was asleep, he was in surgery and vitals were good. Then after he went on bypass we got less info, just "he's still in surgery."
At around 2:00, his surgeon came out. Jonathan and I were called back to a conference room.
We sat down with him and I was nervous about bad news, but hoped that maybe his downcast look was because he was tired and wearing a mask, so you couldn't really read his expression too well.
He told us that the surgery really went well, but he wanted to be honest with us and talk with us personally. When they tried taking Jace off the bypass machine, his heart just stopped. They couldn't get it going again. They tried to do a few things to help, but his heart just wouldn't sustain him. He explained that he was going to come back into the room on something called an ecmo machine, which is basically a portable heart lung machine, or a bypass machine. He was just on it for the heart function, his lungs were still doing the work of oxygenating the blood, even though they needed a ventilator to actually work the diaphragm.
My husband had the presence of mind to ask questions about this, but my mind started raging after "we couldn't get his heart to start." While I was listening, I couldn't speak. Not that I was afraid to shed tears in public, I was mostly afraid of the animalistic fire growing in my chest. As soon as the surgeon left, I was balling, crying out without enough breath, hyperventilating, pacing, falling to my knees, having a hard time breathing because a man just told me my 2 week old baby's heart wouldn't start. Jonathan comforted me as I yelled at the window that this wasn't right, we can't loose him. I finally settled in sitting on the floor with a pillar behind me, just trying to catch my breath.
Jonathan comforted me again, and started explaining that he didn't think we had to worry about losing him yet. They wanted to let his heart rest for a few days and see if they could get him to start up again in 3-5 days time. Even if it didn't, they would try him again in a few more days. The statistics were bad, he had a 50/50 chance if you looked at all congenital heart newborns on ecmo. But, he had a much stronger heart and a much more solid start to life than most of the babies in those statistics.
I wanted to be alone. I wanted to hide. But I knew I had to go out of the conference room at some point. After a good long time in that room, we went out to the waiting room where we had so many loved ones who all wanted to give hugs and comfort us. I just wanted to find a quiet place to drink some tea and be alone. I went back to the room, and was tucked behind the stroller sitting on a couch. I was trying to quietly cry so I didn't draw attention to myself, and suddenly the OR team brought Jace into the room. There were probably at least 10 people scurrying around trying to plug everything in, hooking up all sorts of wires, adjusting his bed, lifting it up super high. I just got a peek at my baby boy, just his little head and this peace came over me for a second. It was so good to see him, and the reality that he was barely alive didn't phase me, because he was alive right then and I could see him.
A nurse said that I needed to leave, so I was escorted back to the waiting room. I tried to tell her I needed to be alone, but the words just wouldn't come out. She assumed that it was because I saw him that I needed some sugar and told everyone to get me something to drink.
When a baby comes back from heart surgery, their bodies are almost unrecognizable. They swell up like crazy, have tons of wires, stickers, tubes and ports. Even in the best of cases, some babies come back with their chests still open. The nurses and doctors do their best to prepare you, and we were prepared for all of this. But we weren't prepared for ecmo, which means that he came back open chest and with huge tubes filled with blood going into his chest and out, down and over to a machine. There was this complex circuit of tubes, not just one continuous loop. Every hour a nurse would take a flashlight and check the circuit for clots.
Jace had 2 nurses all of the time while he was on ecmo. He had an ecmo nurse that just took care of the ecmo machine and Jace's blood, including adding blood for volume, and then a nurse specifically devoted to his needs, a baby nurse. He was not super stable for the first night after surgery. The lights stayed on, and the nurses worked continuously, turning his body, adjusting medications, checking blood samples for the gasses in them, tweaking everything until his vitals looked good.
Jace, my baby born 2 weeks prior, was now on life support.
Around 7 his visitors started rolling in. Great grandparents, grandparents, his pediatrician, our pastor, and a whole lot of friends came to pray right before he went in for surgery. His pediatrician got down on his knees and lead the prayer. I was holding Jace, and sitting in this chair completely surrounded by people who love our family. We prayed until the surgeon came to talk with us. It was so beautiful, there wasn't a dry eye in the room.
Jonathan and I talked with one of the two pediatric cardiologist surgeons that would be working together on Jace's heart. He re explained the process of putting a shunt in to restrict blood flow to the lungs, sewing up his pulmonary artery, and then they also removed the septum wall in Jace's heart between the two atrium.
The understanding I had was that they do these things all the time, and they weren't in the least bit concerned about complications. I wish I had asked the hard questions that float into every parents minds when something so scary happens... is my baby going to make it? What are the risk factors? What kind of complications are possible?
Hope is a funny thing. When you have hope, it seems ridiculous to ask the hard questions. I know a lot of Christians who say the things like praying in faith for rain means you carry your umbrella, prepared for a miracle. I know God heals, I have seen it first hand. So for me, I truly believe that if God wanted to heal Jace, it would have happened. I don't know why, but I know it is for a purpose that we have to walk through this. I was trying to have faith that he would be healed, but since I really wasn't getting the sense that God was definitely going to heal Jace, I tried to prepare by asking all the questions. I don't think it ever crossed my mind that it was possible he might not survive the surgery. Obviously I knew that it was a risk, but it always is in a surgery and it usually turns out fine. I figured that if he was in my care I might miss something and he might die, but I guess I thought (and the surgeons convinced me) that these people could handle his situation, no problem. So in my mind we were just waiting for a long hard healing process.
Our nurse suited up, had us kiss Jace, and let us walk him to the operating room for one more kiss. Then we cried before coming back up to join our prayer team in the lobby of the picu.
Every hour or two there was a staff member of the hospital that would come update us on the surgery. At first it was to tell us he was asleep, he was in surgery and vitals were good. Then after he went on bypass we got less info, just "he's still in surgery."
At around 2:00, his surgeon came out. Jonathan and I were called back to a conference room.
We sat down with him and I was nervous about bad news, but hoped that maybe his downcast look was because he was tired and wearing a mask, so you couldn't really read his expression too well.
He told us that the surgery really went well, but he wanted to be honest with us and talk with us personally. When they tried taking Jace off the bypass machine, his heart just stopped. They couldn't get it going again. They tried to do a few things to help, but his heart just wouldn't sustain him. He explained that he was going to come back into the room on something called an ecmo machine, which is basically a portable heart lung machine, or a bypass machine. He was just on it for the heart function, his lungs were still doing the work of oxygenating the blood, even though they needed a ventilator to actually work the diaphragm.
My husband had the presence of mind to ask questions about this, but my mind started raging after "we couldn't get his heart to start." While I was listening, I couldn't speak. Not that I was afraid to shed tears in public, I was mostly afraid of the animalistic fire growing in my chest. As soon as the surgeon left, I was balling, crying out without enough breath, hyperventilating, pacing, falling to my knees, having a hard time breathing because a man just told me my 2 week old baby's heart wouldn't start. Jonathan comforted me as I yelled at the window that this wasn't right, we can't loose him. I finally settled in sitting on the floor with a pillar behind me, just trying to catch my breath.
Jonathan comforted me again, and started explaining that he didn't think we had to worry about losing him yet. They wanted to let his heart rest for a few days and see if they could get him to start up again in 3-5 days time. Even if it didn't, they would try him again in a few more days. The statistics were bad, he had a 50/50 chance if you looked at all congenital heart newborns on ecmo. But, he had a much stronger heart and a much more solid start to life than most of the babies in those statistics.
I wanted to be alone. I wanted to hide. But I knew I had to go out of the conference room at some point. After a good long time in that room, we went out to the waiting room where we had so many loved ones who all wanted to give hugs and comfort us. I just wanted to find a quiet place to drink some tea and be alone. I went back to the room, and was tucked behind the stroller sitting on a couch. I was trying to quietly cry so I didn't draw attention to myself, and suddenly the OR team brought Jace into the room. There were probably at least 10 people scurrying around trying to plug everything in, hooking up all sorts of wires, adjusting his bed, lifting it up super high. I just got a peek at my baby boy, just his little head and this peace came over me for a second. It was so good to see him, and the reality that he was barely alive didn't phase me, because he was alive right then and I could see him.
A nurse said that I needed to leave, so I was escorted back to the waiting room. I tried to tell her I needed to be alone, but the words just wouldn't come out. She assumed that it was because I saw him that I needed some sugar and told everyone to get me something to drink.
When a baby comes back from heart surgery, their bodies are almost unrecognizable. They swell up like crazy, have tons of wires, stickers, tubes and ports. Even in the best of cases, some babies come back with their chests still open. The nurses and doctors do their best to prepare you, and we were prepared for all of this. But we weren't prepared for ecmo, which means that he came back open chest and with huge tubes filled with blood going into his chest and out, down and over to a machine. There was this complex circuit of tubes, not just one continuous loop. Every hour a nurse would take a flashlight and check the circuit for clots.
Jace had 2 nurses all of the time while he was on ecmo. He had an ecmo nurse that just took care of the ecmo machine and Jace's blood, including adding blood for volume, and then a nurse specifically devoted to his needs, a baby nurse. He was not super stable for the first night after surgery. The lights stayed on, and the nurses worked continuously, turning his body, adjusting medications, checking blood samples for the gasses in them, tweaking everything until his vitals looked good.
Jace, my baby born 2 weeks prior, was now on life support.
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