The Rory Story - Part III
Friday, September 9
It felt like we were getting our miracle. At rounds today the doctors told us Rory was stable enough to be moved to the UofA and she would probably have surgery within 24 hours of arriving.
My stomach churned.
“Do you think they’ll let me ride with her in the ambulance?” I ask Sheldon
“Hopefully.” He says and wraps an arm around my shoulders.
We were having breakfast in the cafeteria of the hospital. We had called our parents to let them know the good news. The transport team had been arranged for. Rory would be on her way sometime today.
Or at least that’s what we thought. Nothing could have prepared us for the news we received when we walked unsuspectingly back into Rory’s room.
A doctor we had never seen before was standing over Rory. He walks over to us and introduces himself as a surgeon from the UofA. And then proceeds to tell us he will not be doing the surgery and Rory isn’t going anywhere.
Because the small bleed in her brain turned out to be not so small. In fact, it turned out to be the biggest brain hemorrhage the doctor had ever seen in an infant. The left side of her brain was completely dead. Her brain was swelling, applying pressure to the right side. And they didn’t think the bleeding was done.
All this was delivered in a rather callous five minute monologue.
Sheldon and I stood there, stunned and uncomprehending.
This cannot be happening.
As the UofA doctor left, Rory’s usual doctor and staff came up to us and apologized for us finding out this way and once again led us into the poorly named “Goldfish Conference Room” to discuss what this would mean for Rory.
(Please note I am not responsible for what I may do if I ever see a goldfish cracker. I have a sudden and probably violent aversion to all things goldfish.)
We sit in the conference room.
“Do you understand what this means?” Rory’s doctor asks.
I don’t answer. I don’t want to understand. I just want Rory to be well again.
“The bleeding in her brain is quite extensive. Operating on someone when they are bleeding internally simply means they will die on the table. They will bleed out.” The doctor explains.
“What about when it stops bleeding?” I ask desperately.
The doctor shakes his head, “To find a surgeon who would be willing to do the surgery on a baby will that much brain damage is highly unlikely. He would most likely feel it would not be in the baby’s best interest or that he was merely extending a life by a few months rather than saving it.”
This cannot be happening.
He continues, “The bowel surgery, as you know, is not just one surgery. There are multiple surgeries needed. Many tests performed. She would have to be handled and checked and poked.”
I cringe. The way her face screws up with pain any time she is assessed or change is not something I am able to ignore. Her pain medication is supplemented by boluses anytime she needs to be handled but I can still tell she is uncomfortable.
“It is not my belief that the surgery would be in her best interest. Medically there is nothing more to be done. I do not believe we can save her.” The doctor says
I nod, because they seem to be waiting for some sort of response.
“You need to think about what’s best for Rory. Maybe we should start making her more comfortable. Perhaps taking her off the ventilator and then you can hold her and treat her like a normal baby without all the tubes and wires attached.”
I stare at him, “You want us to take her off the ventilator? She’s maintaining her BP and her heart rate and she’s breathing above the ventilator. Why would we take her off? And even if we did, I don’t think she would just stop breathing.”
“No, you’re right, she’d probably keep breathing for a time. I think we just need to be focusing on keeping her comfortable.” He says.
“So we would switch her to the CPAP?” I ask
“If that’s what you choose, yes.”
We leave the room and head back to Rory. I take her hand. Her fingers slowly curl around mine. I look at her monitors. Her heart rate is fine, her blood pressure is good and she’s still taking 20-30 breaths over the ventilator.
I don’t understand. I don’t understand why she doesn’t seem any different if half her brain is dead. I don’t understand why they are in such a hurry to pull the plug on her.
“Why are they giving up on you, baby?” I whisper and proceed to cry all over her isolette. (*Isolette – her little incubator/bed/thing.)
Sheldon and I head back to our room trying to figure out how we are going to call our parents. We had just called them 45 minutes ago with the news Rory was heading to the UofA.
My parents turn around from their roadtrip and head back. Sheldon’s parents head in to the city.
We tell them we are thinking of taking her off the ventilator so we can hold her and so she’s more comfortable.
“If God’s going to heal her, He can do it whether or not she’s on the ventilator.”
Saturday: September 10
It wasn’t until the wee small hours of Saturday morning that I dared mention the ventilator to Rory’s nurse.
“Yes, we would take her off the ventilator and you could hold her. We would get a private room for you guys to be in and she wouldn’t have all these tubes and things attached to her so you could treat her like a normal baby.”
“Take her… to our room… to… say good bye?” I ask, incredulous.
The nurse nods.
“So, if we take her off the ventilator and put her on the CPAP it is with the understanding that we are holding her for the last time and saying goodbye?”
“Yes.” The nurse answers gently, “Taking her off the ventilator would indicate you are letting her go.”
I gulp. “Oh. I didn’t realize that’s what the doctor meant. I thought he meant she would survive indefinitely on the CPAP. Not that we would be holding her for the last time and saying goodbye.”
I turn to Sheldon. “Did you know that’s what he meant?”
“No. I didn’t realize he was meaning take her off the ventilator and say goodbye.” He answers.
“I’m not ready for that. I don’t want to do that.” Panic makes my whispered voice go all squeaky.
Sheldon shakes his head vehemently. “Neither am I. I don’t get what their hurry is. She looks no different than yesterday. She opened her eyes and looked at us for 15 minutes yesterday. And what, they just want us to pull the plug and walk away? I don’t get it.”
We head back to our room to catch a few hours of sleep until it’s time to meet with the doctors again. It’s the weekend so a new doctor is on call.
“Why don’t you tell me what you understand about what Rory’s situation is?” she asks kindly.
“We understand Rory has suffered extensive brain damage. We know her having surgery is now out of the question. We realize that medically there is nothing more to be done for her. We understand she could die at any time, so everyone can stop telling us that.”
The doctor nods and cracks a smile, “Alright. That’s why I wanted you to tell me so I wouldn’t be repeating what you already know. You seem to understand the situation.”
“We are also not ready to take her off the ventilator. If she starts showing signs she is in pain and you aren’t able to manage it for her then we will make a decision then. But we just want until Monday. We want the weekend for family to come and see her. We are waiting for a miracle.”
They nod and take notes.
“If… if she has another cardiac arrest… you don’t have to try to save her.”
I don’t know where I got the strength to say those words. No one should ever have to tell someone not to save their baby.
“Leave her on the ventilator. Her stats are so good with it, we just can’t justify taking her off. Make her comfortable. Don’t let her be in pain. But if… if she’s leaving… you don’t have to try to make her stay.”
The doctor nods, “So what I’m hearing is that we won’t introduce any new treatment.”
“We will of course manage her pain and make her as comfortable as we possibly can. But I really think you should hold her now.”
My head jerks up. “I can hold her? With the ventilator?”
“Yes. She was too sick and unstable to be held before, but now I believe the benefits, for all of you, outweigh the risks. I can’t imagine how difficult it’s been on you and she knows she hasn’t been held in over a week. She will be the most comfortable with you.”
We held her for over three hours that night.
“I guess God just wants to heal her Himself and that’s why she’s not going to the UofA.” Sheldon says hopefully, cuddling Rory to his chest.
I squeeze his hand and nod. There is always hope. We will keep hoping until the very end. God can do anything. Nothing is impossible with him.
But there was something we noticed that day. Something we could barely admit to each other.
Rory had barely opened her eyes that day and when she did, she stared blankly. For the first time we had to admit our little girl wasn’t really there the way she was yesterday. It felt like she was slipping away.
Sunday: September 11
More family came to see Rory on Sunday. They brought with them their hope and prayers for Rory. For Sheldon and I, who were watching her heart rate slow and her breaths decrease, we thought maybe God was going to save her in the eleventh hour. Then no one could say it wasn’t God who saved Rory.
By the evening Rory had stopped taking breaths on her own. She was relying completely on her ventilator. When she settled on my chest that night, she started breathing again for about an hour before it was too much for her and she went back to relying on the ventilator.
Sheldon and I took turns holding her all that night. I sang her lullabies and we read her stories. We napped restlessly and watched her monitors. We hoped. We prayed. We waited for our miracle. We watched helplessly as her heart rate dropped to below 100. (When well it has been between 140-160 and just a few days ago it had been 120-140)
She did not react when she was transferred between us. She didn’t try to wrap her hand around our fingers. In many ways, it felt like she was already gone. We had asked God to make it perfectly clear to us if we were supposed to let her go. Our hearts were breaking as we received our answer.
This could not be happening. I remembered Sheldon hugging me tight and telling me, “She’s going to be ok. She has to be. God wouldn’t do this to you.”
I couldn’t stop thinking about Job. I couldn’t stop thinking God gives and takes away. I couldn’t stop thinking about how we can’t boss God around and how He does things no one understands.
Oh God, are you really going to do this to me? Are you taking her back?
It didn’t feel like we were going to get our miracle. But as fragile as hope is, it’s hard to kill. And we had to have something to hang on to.
Monday: September 12
We didn’t want it to, but Monday morning came. Rory continued to rely completely on the ventilator and have a low heart beat. No miracle had happened in the few hours of sleep we had tried to catch.
“We’re ready.” We told the team, and they began to prepare to bring Rory to us in our room.
What a lie. We weren’t ready. We would never have been ready. You cannot ever be ready to say goodbye to your child. But we couldn’t just let her lie there, alone and isolated in her little bed. We couldn’t just watch her deteriorate and slip away without someone holding her. We were keeping her alive without truly knowing how much pain she was in or how much of her was even still here.
It was time. Either we were getting a miracle or Rory was leaving. Either way, it was time.
They brought her to us. I wanted to hold her, skin to skin. So we did. They laid her on me and wrapped blankets around us. The ventilator came with her into the room. They left her hooked up to it and left Sheldon and I alone with her.
We read to her. We sang to her. We talked to her. We held her tiny little hands and teased her about her big feet. We cried over her. We prayed.
We called the team back in. I wrapped my hands around her tiny body and held her close while they took the ventilator tube out. They left the room. I heard Sheldon whisper brokenly, “It’s not too late, God.”
We held her and cried.
She had only taken two breaths once the ventilation was removed. She was gone. All of the pain that had creased and wrinkled her face in ways I hadn’t even noticed was gone. Rory was completely pain free. Happy, comfortable, and peaceful. She had been healed. Just not in the way we had begged for.
Rory was our miracle. I could never go back and choose not to have known her. Even if I had known she was just on loan for eighteen days I could never choose not to have her. She was our miracle baby and she always will be.
We miss her. We would give anything to have her back. But at least we know we will see her again. She’s in heaven, terrorizing the angels and being super cute and waiting for her mommy and daddy. And let me tell you, we cannot wait.
P.S. Dear angels, I did tell Rory not to pull on your wings, but… I also told her she wasn’t allowed to be born yet and… well, we all know how well that worked out.