Laura’s story -Part 5- the darkest hours

September 25th, 2016. Laura had been recovering quite nicely in the NICU and had even gotten the all clear for her heart after a follow-up echo! All of her lines and tubes had finally come out and she was hooked up only to her CPAP and her NG tube for feeds. At rounds we began the talks of going back to saskatoon to wait for her lung to recruit- we just wanted to be sure that she didn’t need a surgery to correct the problem. Sometimes, the diaphragm is so much in the way that a surgery is required to stitch it down so the lung can have a chance to expand fully. There was no sense leaving Edmonton until we knew if the surgery would be necessary. 

We spent the whole day holding Laura as we had for the past few days and we were so excited to dress her in her cute little sailboat onesie. My dad suggested taking an earlier night to relax and have a nice evening at the apartment – after a couple of weeks of hospital food, this sounded like a great idea! My parents took off a little bit before us to get some groceries for supper – we were going to have sausages and perogies. When we got to the parkade the line up to get out was huge and my dad called to say he was still stuck trying to get out- we were all so frustrated! It is so silly to think back on the night and remember how big of a deal this seemed like at the time…

We got to the apartment and my dad started on supper while the rest of us just kind of hung around and waited. At 19:38pm my phone range and I saw the Alberta area code. My heart sank and my face grew pale- why are they calling?

Laura had an episode while in the momaroo where her heart rate dropped. The nurse picked her up and put her in her bed and her heart rate came back up. I think you should come in if you can.

I hung up and by that point everyone knew something was going on and had come to see. All I could say was “we have to go back to the hospital right now.” My dad threw the supper into the fridge and we all piled in the car and started the quiet ride to the hospital. None of us knew what had happened or what was going on but we knew that it was bad. At 19:48 my phone rang a second time:

Laura’s heart rate dropped again. We started compressions and they are intubating her now. You need to get here now.

Nothingness. I held onto my husband A.J’s hand while I listened to my heart race out of my chest and felt my skin tremble. How can you describe feeling nothing and everything all at the same time? My baby was dying while I was stuck in this stupid car. My fantastic father found the strength to drive safely to the hospital where he dropped us off at the main entrance so that we could get there as fast as possible. 

We headed for the NICU and as soon as we arrived one of the nurses grabbed us and took us across the way to the PICU where she thought Laura had been taken. She wasn’t there…another NICU nurse came in and said that she was over in the PCICU and we were taken to the hallway outside the unit where we were met by the neonatologist – Dr. Michael. He led us to his office where he could speak with us privately. 

He explained that no one knew what happened but that right now they were putting Laura on ECMO to get her heart going again. He explained that they had a few theories on what had happened :

1. Her right lung collapsed leaving her with no working lungs and her heart couldn’t handle it
2. She developed an infection that had gotten bad enough to affect her heart
3. Something was wrong with the repair to her heart

The working theory was that it was likely her lungs that were the issue but they really didn’t know and the priority was getting her stabilized. It would take a couple hours to get her stabilized, put on ECMO and to get all the lines they would need. He told us that the situation was very bad and he couldn’t say if Laura was going to be okay. What he could say was that in the  midst of compressions, Laura looked up at him while he was trying to intubated her – I know this sounds scary but it’s actually a very good sign because it means that her brain was receiving the oxygen that it needed. 

He left us for a while and we let my parents come in so we could explain what had happened in between sobs. It always helped me stabilize my emotions a bit when I could explain the medical part of what was going on. My dad prayed with us and it meant so much. He also sent out a call for prayer to the other pastors in his division. A.J called his mom and did his best to explain the situation but at this point we didn’t know much. 

After a little while we were taken to a more comfortable waiting room that we could have some privacy in, we waited for hours – I must have had to pee every 5 minutes- a stress reaction that is rather bizarre (as I’m writing this I’m feeling the need to pee just talking about it). Finally, Dr. Gonzalo, the intensivist came out with a fellow to explain what he knew. He told us that Laura had experienced a lengthy cardiac arrest and that they had emergently placed her on ECMO support. He told us that she was not at all stable but that she was still with us and that it was important that we be able to see her as soon as possible. 

They were still working on her but he took us in anyway and we were able to see her. There are no words to describe the sight we saw when we walked in. This was not a baby, this was just a swollen, grey thing attached to more wires, lines and tubes than you could count. But somehow…it was still Laura. 

It is bizarre feeling so distant yet so close all at the same time- she looked horrific, but seeing her alive made a weight lift off my shoulders.

The scene. Twelve doctors surrounding a hospital crib all talking and looking at the grey, swollen baby lying naked and covered in blood on the table. Chest open- tubes (cannulas) full of blood coming out of her open sternum. Medication lines coming out of her clavicle, her legs and her arms; chest tubes coming out of her sides and her mediastinal, ECMO cannulas carrying oxygenated and deoxygenated blood to and from her body through her open sternum, breathing tube that is only delivering 10 breaths a minute, making it appear as if she is not breathing at all along with monitors on her body and head. 

She was hooked up to numerous medications, monitors and the ECMO circuit. ECMO- extracorporeal membrane oxygenation– is a type of life support used only in emergent situations in which the heart or the lungs have completely lost function. The machine has a pump and an oxygen tank and works as the heart and lungs of the patient. There are tubes called cannulas that take blood from the heart, add oxygen and then circulate it back into the body. While on ECMO, the heart continues beating but it does not carry any of the load that it normally would so it gets a chance to rest. Breathing is unnecessary but the patient remains on a ventilator to keep their lungs from seizing. In Laura’s case, taking the load off the heart allowed her heart to begin beating on its own again but after 90 minutes of compressions, it was not capable of pumping any blood to her body. 

The longer we watched, the more comfortable we became with the whole situation. We spoke to many doctors and the new thought after speaking with her surgeon was that her coronary arteries were likely causing an issue – he had been a bit nervous about them from the beginning. They called in a cardiologist to perform an emergency angiography of her coronary arteries at 01:00 to get a good picture of what had happened. 

When they took Laura down to the cath lab, A.J and I did our best to catch a few winks in the parent rooms at the hospital.  At 03:00 we got a call from Dr. Gonzalo- when A.J picked up the phone in the parent room it broke apart in his hand…great. We waited a minute and he called back. He explained that Laura’s coronary arteries had shifted and been completely blocked off, which didn’t allow any blood to reach her heart through the left coronary arteries. Her surgeon had decided to operate at 06:00 to correct the problem. We went back in and spent time with Laura before she went into surgery – by this point the ECMO was doing its job and Laura was getting pinker by the hour. 

At around 06:00 the anesthesiologist, Dr. Dominic, came to get her and explained to us that he had no idea how long the surgery would take but she would likely still be on ECMO coming out of surgery. 

Another wait began…