Sunday, June 19, 2016

Caiden's Birth Story

Today is my 4th HELLP-versary. Four years ago today I was diagnosed at just 31 weeks with severe preeclampsia and Class I HELLP Syndrome, a rare and all too often deadly condition. It is the day that catapulted us into the preemie world and having a special needs child. As the years have gone on, my memory has faded, but there are some things I will never forget. This is something I wrote shortly before Caiden's first birthday, with a few factual edits.

As Caiden's first birthday is fast approaching I find myself thinking back to his delivery and time in the NICU. Its hard not to think about how his story began as we approach the anniversary of his surprise arrival. He's come so far in such a short period of time, I can't imagine being more proud of him.

I remember the day I went into the hospital, I was prepared to be sent home like every other time, expecting to be told my pains were normal and to rest. I was in excruciating pain, unable to stand or sit up right. I wish I had taken one more picture of my belly before laying down in that bed. I had no idea I wouldn't be allowed to move the next three days. I remember my doctor coming in and telling me what was happening in two seconds flat before walking out. I didnt understand. Before they started an IV I asked if I could get up and walk around for a minute. It was the first of many No's I would be told over the next few days.

I remember calling my mother and bawling as I told her I was probably going to have a c-section and begging her to fly down as soon as she could. I remember crying as the nurses dug around my veins trying to put an IV in both my hands, failing to numb one and then finally putting it in my wrist apologizing profusely, leaving me with a scar I still have to this day.

I remember watching my husband walk in, still in his work uniform and the scared look on his face as I repeated "I'm sorry" over and over again. All the conversations we had about viability and promising the likelihood of an early delivery happening to us was slim, turned into lies.

I remember the ambulance ride as I was transferred to a hospital with a NICU. It was the first time I'd been in an ambulance. The paramedic who sat next to me and held my hand, telling me stories of his own preemie. I remember the blood pressure machine that sat above me and the sorrowed look on his face every time he read the number. I remember not being able to stop the tears from flowing as I wondered if I was going to walk out of the hospital I was headed for.

I mercifully, don't remember much of my labor. It was three days long and the pain of multiple organ failure grossly out weighed the pain of contractions. I do remember as I was getting ready to push the nurse told me not to, I was supposed to wait but I didn't have a choice. He was ready to come.
I remember kicking the doctor in the stomach who was there to catch him.
I remember dozens of people walk in as I was pushing, waiting to evaluate what was wrong with my child.
I remember him crying and how happy I was to hear that wonderful sound. I relaxed and for a moment, for the first time since being told I was having him early, I felt at peace.
I don't remember him being held up by my face so I could see him, or the comments I'm sure were made about my practically dead placenta.

The first 24 hours after his birth went by slowly. I was torn between resting and wishing I was allowed to get up and go see him. I was refusing pain meds, I didn't hurt. I didn't understand why they wouldn't let me out of bed, but I suppose stroke level blood pressure is as good a reason as ever.

The first time I was allowed to go see Caiden, I was insanely nervous. I didn't know what I was going to see. I didn't know how small he was or if the steroids had been given enough time. I'd never seen a premature baby before. As I was wheeled out of my room, and down a maze of hallways we passed two nurseries. I remember smiling at the sleeping babies and wishing my son was in there, chubby and healthy, just waiting to be brought back to me. I remember how lost I was going through the hallways. I had never been in this hospital, I didn't know where anything was, I didn't know what the inside of a NICU looked like. I hadn't seen anything but the walls of my room for days.

As we rounded the final corner we approached a large set of double doors with a corded phone on the wall. I remember my mother who had been already, telling me I had to let them know who I was. The doors stayed locked and shut at all times. We were buzzed through and I saw the hand washing station for the first time. It was automated and the most bizarre thing AI had ever seen. I was amazed at the setup. We passed through another set of double doors and entered the NICU.

It was a large room divided into sections by walls and curtains. It was dark, yet warm and monitors could be heard beeping throughout. I knew my son was in that room somewhere but I didn't know where. I wanted to run to him. We turned another corner and there was a raised glass table with a blue light shining on it. The smallest baby I had ever seen was laying on the table on its belly, completely naked except for a diaper, hat, foam block out glasses and tons of wires attached to him. He looked alien.

I remember the nurse smiling at me and saying "so you must be mommy," it was the first time someone had used that term in reference to me. It felt weird to me, I certainly didn't feel like a "mommy." I stood up and met my son. I remember feeling an overwhelming urge to cry and tried my hardest not to. The smallest baby I had ever seen was my son. Sleeping, unaware I was there next to him. I just stood there for a minute, I had a hard time believing that was my baby. The nurse said something I will never forget. She looked at him and noticing my hesitation, she said "you can touch him."

I never thought I would need permission to touch my own child but those words were the sweetest words I'd ever heard. After being told no to everything the past few days, it was amazing to be granted permission for something, especially something so important.

I remember regretting sitting back down in the wheel chair and having to go back to my room for meds and rest. The short trip had taken a lot out of me and while I never wanted to leave his side, I knew I needed to rest just as much as he did.

The trip to and from the NICU would become routine in no time. We started parking in the same spot. The receptionist knew us by name and was excited for us when we finally left. Caiden's doctor knew what time to expect us and would stop by every day to give us an update personally. Day by day we watched the machines get turned down and eventually disappear.

I remember his doctor better than I remember the nurses. Dr. Craig Anderson. He is an amazing man. He was there whenever we needed him, he encouraged me to pump and breastfeed, he made it possible for Caiden to go home ahead of schedule. He was excited to see him again when we went back a month later to pick up my extra milk. I can't wait to see him again someday and say thank you. I never got the chance to say goodbye and thank him for all he did for us.

I may not have the best memory, but I remember what's important. I'm glad Caiden won't have any memory of his time in the NICU. I'm glad he'll grow up knowing he did something amazing as a baby. He survived. And each year on his birthday we will celebrate his life, not mourn the time we lost. Each year we will celebrate how far he's come. Each year we will move one step closer to normality and one step further from premature.

When I wrote this three years ago, I had no idea the problems we'd continue to face. I can't even begin to count how many times I've had to repeat his birth story to doctors and have to emphasize that he wasn't the sick one, I was. He was healthy for a preemie, I was the one who was dying. Its not fair that some of his struggles are likely due to his prematurity, but a majority of them can't be explained away by it. We may never know why he struggles, or why I got sick.

Hes not the child I imagined him to be when I was pregnant. I never expected him to have the medical issues that he does. I'm more proud of him today than I have ever been before. His struggles run deep, but he's overcome so much and is the happiest kid you'll ever meet. Today is a hard day for me. The day my guilt creeps back in. I don't know if I will ever forgive myself for the way his life started, or my horribly neglectful doctor for that matter. Caiden won't remember it though, he may never understand it, and that's all I can hope for. He shouldn't have to live in the shadow of his prematurity, and hopefully his development continues to progress at the rate it has been lately.

He's going to be four on Tuesday and starting school this fall. Its incredible how far he's come in the last few years. Its hard to imagine that he was once that little baby on the warming table attached to more wires and tubes than I knew was possible.