A HAUNTING TO-DO LIST

You know when you are trying to fall asleep and you have something to remember for the next day and your brain just won't let you shut down? Your list of to-dos keep playing over and over in your mind, trying to ensure that you remember them when you wake up. Well, my brain has been doing that. But instead of trying to remember a to-do list (change diaper, feed baby, play and put baby down doesn't really need a to-do list), my brain is trying to cling to each and every detail of the first day that we took Lauren to the hospital. I'm not sure why I'm doing that. I think that I feel that it is an important part of her life's story, and mine, but it is not helping me move past her being sick when I'm reliving it over and over again. It is fresh every time with the sounds, sights, movements, and even smells of the scariest moments of my life. So, like a to-do list, I'm going to write it all down and hope that my brain will be able to finally release it.

Here we go. Back to that day.

July 31, 2012.

Lauren has been awake at night now for the past few nights. I've had to let her sleep beside me and when she cries I rest my hand on her and it seems to give her the comfort she needs to sleep some more. We are both so tired. I know that she has been losing weight but I don't know why it is happening. I still haven't heard back from the pediatrician and I'm feeling confused. Is there something wrong with my milk? She is eating so that can't be it.

I went to the clinic with her yesterday after I weighed her in and she was hovering at 12 pounds. The doctor there said Lauren seems okay and that maybe there is a feeding issue. When I brought up that the rotovirus vaccine seemed to be around when this started she pushed on Lauren's abdomen and there was no problem. So why does she keep losing weight? This question is in my mind every second of the day. There is something wrong with her.

The doctor fit us in this morning but our regular doctor isn't there. Lauren threw up all of her milk and won't take anymore. She has been sleeping more today. She isn't herself. I told the doctor that Lauren is losing weight, lethargic, pale, and she won't eat today. The doctor listened to her chest and they have moved up her pediatrician's appointment to this coming Friday. The doctor said, "I'm concerned about her weight loss but not worried that she won't make it to her appointment on Friday." But I swear that there is something more. Every time that I try to feed her she takes a little bit and then seems to be falling asleep.

I'm messaging with my friend in Switzerland and telling her what is happening with Lauren. Maybe we should take her to the hospital but the doctor just said she was okay.

We are playing outside. Lauren loves to be out here. It is so nice to see her happy and smiling again. But she's still sucking her fingers so much. She only does that to soothe herself. The moments where she is laughing make me feel so wonderful. It's so nice and sunny out but Lauren seems tired again. The worry just won't go away. Maybe we should go to the hospital.

Matt is home. He looks so tired. But I just think there is something wrong with Lauren. She still hasn't eaten today. She must be thirsty. She might need fluids. Is it possible that her intestines are twisted? Nicole has told me about that happening in dogs. I tell Matt that I'm really worried and why. He asks me, "What do you think we should do?" and I tell him that I think we should take her to the hospital. I'm not sure though because two doctors in the last 24 hours now have said that she is fine. I call my mom and she tells us to take her to Children's Hospital. I was going to just go to Burnaby but this makes sense even though it is further. I am worried that Matt might suggest that he have a quick nap first but he seems to have a second wind and we start to pack Lauren's bag.

The drive to the hospital is relatively uneventful and we figure that it won't hurt to get another doctor to look at her. She might need some fluids now because she hasn't eaten all day. We walk into the emergency department and I think we're in the wrong place. It is totally empty here. Where are all the kids? It is a beautiful sunny day, there must be some kids out there falling off of the monkey bars! Is it closed? Do we go somewhere else?

The nurse at the front sits us down to ask us quick questions about what brought us in. She listens to Lauren's chest and fills in the information on the computer. It's so empty that we will be helped quickly. As we sit there a little girl comes in with her parents. She has hurt, maybe broken, her arm. I lean over and whisper to Matt, " At least we aren't dealing with something seriously like a broken bone." Our nurse says to the nurse beside her, "Oh, she's fine." That makes us feel a lot better.

The resident comes in. She seems very nice. For the first time I feel like my concerns about her weight loss are being taken seriously. She sees the skin on Lauren's legs that used to be filled with fat and are now empty folds. We weigh Lauren and she is now only 11 pounds and 14 ounces. It breaks my heart to see that she has lost even more weight. What is wrong?!? At least this doctor appears to be worried too.

The ER doctor comes in. He is spending a long time listening to Lauren's chest. She is over him touching her and I hear him say, "There," and point to Lauren's face. The resident nods. What did they see?!
"Have you ever noticed that Lauren's lips have turned blue before?" he asks me.
Blue? What is he talking about? Of course not! "No."
"I'm hearing a gallop in her heart and when she was crying there, her lips were turning blue."
"What is a gallop?" I ask.
"That means that there is an extra beat that shouldn't be there. We are going to get her in for a chest X-ray and then we will see what we are dealing with."
The resident listens to Lauren's heart but she can't hear the gallop. How did he hear it and no one else ever has?

Lauren has the chest X-ray. She is so good. I love her so much.

The cardiologist comes in. She is so young.
"Lauren has a severely enlarged heart. This could be for a variety of reasons so we will have to do some tests. We will be admitting Lauren for the night and likely be giving her some medication to help her heart."
Her heart? That seems scary but this doctor doesn't seem overly concerned. If it is just for a night and she has to go on some medicine that's not too bad.
"We are going to do an echo of her heart to see what we can find."

Lauren is so hungry now. She hasn't eaten all day. She is getting really fussy. During the echo I rub the tips of my hair over her face. The cardiologist says, "Mom knows what you like." This keeps Lauren calm for almost forty minutes. She starts to squirm like crazy at the same moment that the cardiologist says, "There." Lauren moves and she loses the picture. There what? What was there?
"Maybe you should try to feed her a bit and then we can continue." The cardiologist leaves.
Okay, I'm sure she is starving anyways. I bring Lauren down to feed and she latches but then starts to gag. I sit her up on the edge of the bed. She is still gagging. Why won't she stop gagging? Now she is dry heaving. She's never done this before.
"Something is wrong!" I scream at Matt. "This isn't right!"
"What do you mean?" He looks so scared.
"Something is wrong! Look at her!!"
Matt runs out into the hall to the nurses station. "Please come. Something is happening!"
A nurse comes so slowly. "Please!!" he yells.
"What seems to be happening?" she asks.
How can she be so calm right now?! "Look at her," I yell. She is dry heaving and making a gutteral noise in the back of her throat. She looks at me in the eye and there is a look of shock and panic on her face. What is happening to my baby?
Matt grabs her and shows her to the nurse. "Look at her," he yells with panic in his voice, as Lauren goes rigid and then her body slumps over his shoulder. That seems to spur the nurse into action and she grabs Lauren and yells a code. The last thing I see as I run screaming out of the room is Lauren being laid down on the bed and her little body being pushed on as the nurse starts CPR while other people rush in.
I crouch down in the hallway screaming, "This can't be happening. This can't be happening." The looks of the parents in the other rooms show their fear for their own children and maybe even for mine. I'm not the only one who can't believe that this is happening.
Lauren's little flopping body is brought to a huge room down the hall and suddenly there are people everywhere. Matt and I follow and, yes, of course we're staying with her. Don't try to make me go anywhere else. Our pastor shows up at that minute and sees the unbelievable. His best friend's daughter is lying there surrounded as a team starts to get her heart going again.
I call my mom, "Mom, her heart just stopped." Her voice catches as she says, "Coming," and like that she has hung up and is on her way.
This isn't happening. This can't be happening.
Matt is face down on the ground praying out the Jesus. He's crying. I've never seen him cry before.
I can't do anything other than stand, rocking side to side, holding my hands up to my face and say over and over again, "Please, God."
I can't live without her. Please don't make me live without her.
It seems like it takes forever and then finally we hear a beautiful, screeching cry. "She's back," someone says. Lauren is reaching up trying to push people away and trying to get the mask off of her face. Her legs are kicking like crazy and it is the most wonderful thing I have ever seen. I just want to run over and scoop her up, but I know I'm not allowed to. A nurse comes over and says, "She's fighting hard. She's trying to get up off of the bed and get out of here."
That's my little girl. She's a fighter.
I have to call my dad. He's out of town. How do I even say this to him? "Dad, we are at Children's Hospital. Lauren's heart stopped but they got it started again." A doctor comes over to talk to me while the phone is still on and all I can think is that it must be killing my dad to hear this doctor talk about his granddaughter's heart stopping.
"Lauren's heart is very sick. It couldn't take the strain anymore. She has been intubated and she will be moved to the ICU. They will set her up and then you will be able to come in and see her."
How did we get here?
How is this happening?
What is happening?

We sit in the waiting room and pray.

The ICU is scary. My eyes are blurry and swollen from crying. I know that there are other people and other babies here but walking through the ICU, all I'm looking for is my little girl. My precious, fragile little girl. We turn the corner and there she is. It breaks my heart to see her lying limp, hooked up to so many machines and tied to the bed to stop her from pulling them out. This can't be happening. This isn't what I had planned for her.

That was 124 days ago. It seems like a lifetime ago and it seems like just yesterday. Now that it is written down, I'm hoping that I can finally let it rest and start to move on. This needs to be the last time that I cry over this. Rather than focusing on Lauren's yesterday, I need to start thinking about her today and looking forward to her tomorrow. Honestly, I've been afraid to do that, but I no longer want to live in fear. However, this has changed me. I am not the same person that I used to be. My daughter almost died. Not in the way that we casually say that someone almost died when they just miss being in a rear-ender or something like that, but in the legitimate, her heart stopped kind of way. I bristle when I hear people say that their day is the worst day ever. I have lived through the worst day ever. Things that were problems before are minor inconveniences now. If I seem different than before, that's because I am. I don't think that anyone could go through this unchanged.

I feel like I need to grieve for this year. This isn't what I had expected as my first year with Lauren. It has been hard with having surgery after her birth, being hospitalized again for some days with an infection just a week later, having postpartum depression and a second surgery, but through it all I always said, at least it is happening to me and not her. But then it was her turn. In total, she spent 41 days in the hospital and many, many more trying to recover. Her recovery still has a long way to go too. I'm looking at heading back to work in the next few months and I feel like I haven't had the time that I wanted with Lauren. Yet, as I write that I realize that I might not have had the year I planned, but at least it didn't end on July 31st, 2012. Even if the days aren't what exactly what I hope for, every day is given as a gift and we can face the challenges ahead.