The surgeon told us that they hoped he would come off 3-5 days later, and then we would be in the hospital for 2-4 weeks. We couldn't imagine being in the hospital that long. We waited until the 3rd day, and I made sure I was up as soon as the doctors rounded to see if he was going to come off ecmo. To me, it seemed like a lot of guess work, and they said maybe tomorrow. The next day was the 4th day, and again they wanted to wait. I was getting so antsy, his heart was beating, I could see it in his open chest! He also had an arterial line that had a sensor for his blood pressure, and the waves in that line showed how his heart was beating.
Let me explain a little more about ecmo, because this was something I didn't understand before Jace was on it. So ecmo is a machine that pumps blood through the body bypassing the heart. When the ecmo circuit is running, it sucks a certain amount of blood out of the heart and keeps it pumping through the body. Jace's heart wasn't doing any work, but it was free to beat and contract. When his heart was beating and contracting more strongly, they could turn down the circuit as much as they would like, and then his heart would get the amount of blood from however much they turned it down to. So if the ecmo was running 100%, his heart was getting no blood, but if it was running 50%, then his heart was pumping half of his blood, and the other half was being pumped by the machine.
So on the 5th day, the doctors rounded, the surgeon came in and said lets turn it down to 50 % and see how he does. They scheduled for the OR team to come to Jace's room at 11 to do the surgery to actually take the tubes out and stitch up his veins and arteries where the machine went in. After ecmo was turned down all morning, the surgeon came back in about 9:45, and said let's see how he does with the machine off. It was incredible, for an hour before surgery my little man was pumping all the blood with his own heart! I was so amused, although it was actually sad, that most people totally take for granted that their babies hearts work so well, and I was so proud of my baby for being able to pump his own blood! Look ma, no ecmo!
My heart was so happy. If anyone else memorized Psalm 23 in the king James version, it says
Psalms 23:4 KJV
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
The valley of the shadow of death is what ecmo feels like. My Jace constantly layed there lifeless, with an occasional wiggle. He was in a medically induced coma. His heart didn't work on its own. Seriously, a power outage, a visitor tripping, anything could have gone a little wrong and my baby would have died. Ecmo is walking through the valley of the shadow of death.
The OR team and the surgeon started suiting up, they were able to do the surgery in his room. I went with my brother and pastor to a small waiting area where we joyously waited for the procedure to be over. A nurse came out after an hour to say he was all done, they were just cleaning up. Then we waited for a really long time. Our pastor, Mark, had gone to get something and he came back looking really sad. He wasn't saying too much, until my brother said he was going to go check on how things were going. Mark stopped my brother and said that he had to go back on ecmo. He peeked around the corner to where Jace's room was, and saw a nurse giving Jace compressions. Shortly after Mark told us this, a nurse came back out and told us that they had gotten everything done, and Jace's heart started to slow way down. They tried putting a pacemaker on him (the leads were already in, which is common procedure for a baby having open heart surgery) but it didn't work, so they had to resuscitate him through CPR compressions.
We were really sad that he wasn't able to come off, but it happened when everything was ready for him, there was plenty of extra blood, a new ecmo machine was prepped just for Jace, the surgeon was still there taking notes on the computer, and a charge nurse was there to give the compressions. If his heart had declined a few hours later, he would have been in much more trouble.
The other problem Jace had was his left leg was slowly turning more and more purple. We noticed it in his toes the day he came back from surgery, and it went from dusky to looking more and more purple all the way up his leg. He also got these huge blackish bruises all around his groin area, and some on his knee, like a strange radius around the place where he had an arterial line. They kept saying it was ok, because he had good capillary refill, which is when you push on your skin and it turns white, and then the amount of time the color comes back is your capillary refill. It should be less than 3 seconds. They were able to find a pulse with the Doppler, up until that night after he had to go back on ecmo. So the surgeon was there, and after my husband probed him further, he finally decided to move the line. It took quite a long time afterwards for the color to come back to his leg, I think a couple of days.
I went home that night so we could celebrate Christmas as a family. We woke up, opened presents with Eliana, ate some cinnamon rolls, and then came back to the hospital all together so we could have a family picture for Jace's first Christmas. I still have those on a different camera, I will have to add them later! We took a tuxedo bib a friend gave him and covered up his chest and wires, then we stood on the stools next to his bed all dressed up! Here's one with Santa
The two surgeons that did his surgery went on vacation, and the surgeon that was on for the week was a man everyone loves. He does heart surgery for pediatrics all the way up to the elderly. He did bypass surgery on both my grandpas, and they both were very excited he was taking care of Jace. "He's the best" was all anyone would say about him! He is an expert on ecmo, and so he would come in anytime he could, look Jace over, and say "hmmm, uh huh, mmm..... ok." Then he was gone. For a parent of a newborn on ecmo, I kinda needed more than that! So I asked questions to the other doctors on the floor, and they would just say it would be a few days. So I stayed constantly, waiting for the surgeon, and some days it was "looks good" and I would ask if he was going to try to take him off, and he would just say in a few days. I gave up trying to catch the surgeon, and just came and left to go see my husband and daughter at night.
The day before new years eve I was coming into the hospital at 10:00 or so at night. I had barely made it into the hospital, and saw the surgeon leaving, along with the doctor who had been on call in the picu. I said hi, not expecting any news, and the surgeon looked like he was just going to walk by. I figured he would just think I was a familiar face, I had only seen him for about 5 times for a minute or two. Right after I passed by I heard "I think we'll take him off tomorrow. " I turned around, hoping that he was talking to me, and he made eye contact just enough to nod before he started walking away again. I was a little dumbfounded, and I said "Jace? You mean taking him completely off or just weaning him?" (They had said that they would have a longer weaning period, so they would have gradually turned down the ecmo machine. ) "Well, yes, that's the goal," was all the surgeon said before leaving again.
I was a little confused about everything, but so excited that maybe tomorrow was the day! The nurses hadn't heard anything from the surgeon about taking him off, neither had the doctors, so they suddenly started working on things to prepare for the next day! I couldn't believe how strange the communication had been in this matter, so I was amazed that I was able to get things rolling just because I ran into the surgeon! It was another thing I had to think God was working in the details for Jace.
The next day was long, and I tried to be calm, but every hour slinked by so slowly. The surgeon didn't come in, but had an assistant that checked Jace out and communicated back to him, and then the assistant was able to give directions to the nurses for weaning the ecmo machine. I had no idea how it was going to work, I figured they would turn off the circuit for a while before, so at the rate they were going I thought it would be at night before they would take him off. Then at about 1, the assistant got on the phone and said ok, here we go! I asked when, he said now, I said, now? The OR team hadn't even been called, how are you going to do it now? Aren't you going to turn off the circuit? The assistant said, well yeah, so I would say within the hour. It was so crazy to me how differently the surgeons were. When this surgeon snapped his fingers, everything happened. When the other surgeon (who was much more impatient) said five times lets do this, he still had to go through and schedule the procedure for a certain time and wait his turn.
They kicked me out, and finally, after almost 2 weeks, Jace came off ecmo successfully on New Years Eve! His chest still had to be open for a few days so that swelling wouldn't stress his heart. He was finally able to wake up from his medically induced coma! Look at those beautiful eyes!
Joel 2:25-26 ESV
I will restore to you the years that the swarming locust has eaten, the hopper, the destroyer, and the cutter, my great army, which I sent among you. “You shall eat in plenty and be satisfied, and praise the name of the Lord your God, who has dealt wondrously with you. And my people shall never again be put to shame.
I cried at the goodness of our God, despite all of these struggles, He still reached out to me just to give me the comfort that we would see better days!
Here is one more picture of Jace with his chest finally closed up a few days later.
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