Not Out of the Woods Yet

Eva was scheduled to have surgery on her heart on Friday, March 23rd. We found out no sooner the day before, of course, the confirmed date and time. Nevertheless, the cardiac team and the neonatologists were very positive and upbeat about surgery -- and so were we! Eva's breathing had been rapid for several days prior, a sign that her lungs were starting to get stressed by her heart condition, and we were greatly looking forward to surgery so we could put that behind us. The fact that the surgery was going to be a less complex repair than originally expected gave us a sense of relief and confidence that we would soon be putting this difficult chapter to rest. And, it didn't look like she'd even need to be put on heart-lung bypass, sidestepping some additional risks that we had hoped to avoid.

On Friday, as Audrey was driving to the hospital at 6AM. to accompany Eva to the OR, she was involved in a minor fender bender. No big deal, outside of the crazy woman driving the other car. But, the hour it took to get back on the road meant that she didn't make it to the hospital in time to accompany Eva on her way to surgery. Around 9:30AM, as I was making my way to the hospital after dropping Noah off at daycare, we were paged by someone on Dr. Shen's staff. The news was devastating to us. Eva had gone into cardiac arrest on the operating table as her chest was being opened. All they had done up to that point was give her anesthesia, basically. The repair had not begun and would not happen that day. The team could not get her heart started quickly, so they did CPR until she was put on a heart lung bypass machine. She was eventually moved to the PICU where she would remain in order to allow her heart to rest, in the hope that she would regain cardiac function over the coming days. Audrey and I spent most of the day in a private room, barely able to comprehend what had happened and trying to come to grips with the situation. That evening, while I was at her bedside, Eva arrested again, although the staff was able to stabilize her soon after. We were prepared for the worst.

Eva's heart did regain function slowly. Despite having a smaller left ventricle, Eva's right ventricle was actually the one that seemed weaker and showed no activity at first. That was just one of the things that confounded us and the doctors. The bigger issue, however, was that the team could not get her bleeding to stop. She was on bypass, but the blood volume of the machine is much greater than that of a child Eva's age. So, the anticlotting medicine they use to keep the machine from malfunctioning overwhelmed Eva's own clotting factor. Basically, she couldn't outclot the machine, meaning she continued to bleed every day. And, the continued transfusions that she had to get were slowly causing inflammation to her body, meaning she was begin to swell and retain fluid. So, on Tuesday afternoon we found out that Eva's repair would take place as the first case on Wednesday. Dr. Shen felt that she ultimately had to come off the anti-coagulants, which required her to be off the heart lung machine, which required that the original repair to her aorta finally happen. If none of this makes any sense, well... I'm no heart surgeon. Let's just say that the circumstances were sub-optimal and we were warned that Wednesday would be a very big day for Eva. If she survived surgery, she'd have a chance at a good recovery. But it was a big IF and we were again prepared by the staff for the worst.

We called my parents to tell them the news and they flew up that night to be with us for Wednesday. We asked our friend, Sheila, to take Noah to school in the morning. I drove this time. We approached the second surgery differently because the height of the stakes were much more apparent to us. As we anticipated surgery the first time, we just assumed that Eva would make it and that we would move on as a family. We were not going to be so cavalier the second time around. And, given how things played out with the first surgery, we saw Wednesday as a second chance to get this right. Audrey and I went to the hospital together. We got there at 6:15AM and accompanied Eva to the OR, giving her a pep talk and some kisses before the doctors took her into the room. We sat around (or in Audrey's case, paced) and waited. We felt pretty peaceful, but the wait was hard to endure.

At around 12:35PM, we got word that the repair was successful and her heart had started beating on its own. She would be weaned off the heart lung machine. About an hour later, we got another update. Her heart was going strong and she was off the heart lung machine, but her left lung was collapsed and full of thick mucus, which kept her body from being properly oxygenated. Dr. Shen described it as a big "goober" that was getting in the way. Her lung was suctioned by a pulmonologist, which improved her oxygenation, but she was put on an oscillating ventilator and moved back to the PICU.

As a side effect of the surgery, she experienced something known as "third spacing". For a number of reasons, the trauma she has had to deal with has caused her body to react by leaking fluid into the spaces between her cells. This means she has swollen up like a balloon. This is not abnormal for cardiac patients and the PICU staff is doing everything they can to manage her fluid situation. She is taking a number of drugs to help her heart work better, to manage any pain she has, and to help her out in a number of other ways. She is also on temporary dialysis now. She hasn't started to pee on her own yet (well, there has been a bit of a trickle), but it is normal for kids under this kind of stress to not have normal kidney function for 5-7 days or more.

The good news is that she is --while critical-- slowly improving. Her heart has proved to be resilient. Her heart rate is strong and her blood pressure seems to get better each day. Her lungs are in good shape now and her oxygenation is often at 100%, allowing the staff to slowly dial down the settings on her ventilator. She moves, but is so swollen that she can't even open her eyes. And, while she might have something to say, all the tubes in her throat keep her from making a sound. She still has an open chest, but Dr. Shen can close that as soon as the swelling goes down and the dialysis is no longer needed. And, they have just put back her feeding tube and started giving her a bit of breast milk again.

Eva has a long road ahead of her. We wish that her recovery could be quick and dramatic, but apparently this is going to be a much longer chapter than we first thought. We are frequently reminded by her doctors and nurses that she is the sickest patient in the PICU (if not the whole hospital), that she's not out of the woods, that there is something else to worry about, that she still requires a lot of help, etc. But, one of the doctors told us he'd never seen so small a baby be so tough. It's that quality that we know is there and that we believe will pull her through. We'll bring her home and Audrey will have to eat crow and buy a minivan. We have absolute faith in Eva's recovery. She deserves nothing less.