Faces of Loss, Faces of Hope

Megan
Mom to Jillian Hannah
Born on December 5, 2009
Passed away Peacefully on December 9, 2009
Boston, Massachusetts
 

I got pregnant with Jillian in July 2009. I loved every second of being pregnant, despite terrible morning sickness and back pain. I was more in love with our baby girl than I had ever thought possible and couldn't wait to meet her at the end of March 2010.

On December 5, 2009, my husband and I were getting ready for a Christmas party. When I was getting dressed, I noticed that my underwear was wet almost immediately after putting it on. I put on a pantyliner, but my underwear was so soaked that it wouldn't stick. I changed my underwear and immediately soaked through two more pantyliners. At first I thought I was just having my typical pregnancy-related bladder issues, but I quickly realized it was something more serious. I called my doctor's office, then lay on my bed waiting for them to call back. They called and told us to go to Labor and Delivery, and when I stood up to go, a cascade of fluid fell to the floor. I knew we were in trouble.
 

We raced to the hospital, and when we got to a triage room less than 15 minutes later, my jeans were soaked to my ankles. There was no question in any one's mind that my water had broken. I got into bed and was quickly sent for an ultrasound. Our sweet baby came onto the screen, moving normally with her heart beating. I looked at my cervix and realized it didn't look right. I looked at the doctor's face to see what I could tell, and he was making that face that you never want to see on the face of a doctor. My cervix was totally dilated and effaced - he said it was essentially gone.
 

I returned to the L&D floor and was pumped full of drugs. The OB on duty that night was from my practice. I'd never met her, but her name and face were familiar, so I was comfortable under her care. She told me that I would be on bed rest for the rest of my pregnancy, and that we were going to try to calm things down and keep me pregnant for as long as possible, but for now the goal would be another 48 hours. She told us that a team from the NICU would be coming for a consultation, and when they arrived, I don't think I totally listened because I couldn't grasp that we would actually need them.
 

Things did eventually calm down, and the doctor told me I could have dinner. My husband ran to grab soup for us. I didn't have much of an appetite, but I remember feeling like things might turn out just fine. Everything fell apart as soon as that thought crossed my mind. My nurse had me roll over on my left side and was moving the fetal heart monitor. Then my doctor was suddenly over me, doing the same thing. She then said that the baby needed to come out now.
 
Before I knew it, I was in the operating room, strapped to a table, with an anesthesiologist running a yellow plastic toothpick that I couldn't feel down my side. I was squeezing the heck out of some body's hand and trying to figure out where my husband was. He joined me soon after I realized he wasn't there, and then I felt pulling and tugging, heard a million voices around me, and next thing I knew, I heard three tiny cries. They were so faint that I still can't believe I heard them. Our little Jillian, born 16 weeks too early, weighed 1 pound 9 ounces, had a full head of dark hair, and was beautiful. The NICU team wheeled her by my head as they took her from the room. All I could really see was that she was tiny.
 

Once I was able to hold myself up on my legs, I was moved to another floor. On the way to my new room, I was wheeled into the NICU to get my first real look at our daughter. She was black and blue and had so many wires and tubes that it didn't seem real, but she was gorgeous. I wanted to take her out and fix her. I wanted to hold her against my chest and tell her everything would be okay. I was able to touch her but I was so afraid I would hurt her.
 

We spent the next few days on a roller coaster. Her first night went very well, but by the next morning, things had taken a bad turn. Her oxygen levels were swinging, a heart murmur was discovered, which led to an echo cardiogram that showed patent ductus arteriosus, that led to the first mention of surgery, things got better, things got worse, then a small brain bleed was discovered. We were told that there was a good chance that it would be reabsorbed into the brain and she wouldn't have any issues as a result of it.
 

Despite the awful ride, we were falling more and more in love with our girl with each passing second. Somehow, that tiny little girl could make us laugh like nobody else. We talked to her constantly, told her we loved her more than anything, called her brave and strong, and begged her to keep fighting. I fed her colostrum from a q-tip and marveled at how perfect she was despite being the tiniest person I'd ever seen. We were so proud but so scared.
 

On December 9, in the middle of the day, we were in the NICU visiting Jillian. The NICU chiefs operated on a two week rotation, and we met the chief that was rotating in that day. As he and I were standing there looking at Jillian, he mentioned that we would be having a meeting soon with a neurologist to talk about "some developments." My heart sank. I knew this was bad. I don't know how long it took, but we were soon in a family meeting room. When we walked in, I told my husband I was going to puke. He said he felt the same. The doctors, our social worker, and Jillian's primary nurse came in. The neurologist started to explain things that we already knew. My husband, understandably impatient, told him to just tell us. Just say it.
 

The next thing I heard was "catastrophic brain hemorrhage." We knew immediately that it was time to say goodbye. The doctors confirmed that Jillian would have zero quality of life, that she would never know us, and she would be on machines for the rest of her life - if she even survived the next few days. They told us that we didn't need to rush our decision, but they let us know they agreed with our decision. That said, we knew we did need to hurry. We didn't want our sweet little girl to suffer.
 

Jillian was moved to a private room. She was removed from her isolate and laid on my chest. It was so amazing to hold her that I can't even describe it. She was so warm and snugly, and even though the doctors said that she would never now us, I have zero doubts about whether she knew who I was. We read her stories, my husband held her for a while, we read more stories, and then I held her again. Once we were ready, her breathing tube was removed. She was placed in my arms and we sat there as a family until her tiny heart stopped beating. It was the most devastating thing we could have ever imagined, but it was the most peaceful, amazing experience of my life.
 

During those hours we spent holding her, we told her how much we loved her as many times as we could. We told her that we were the luckiest people ever because we got to be her parents, and we promised her that we would do whatever we could to be happy again, just for her.
 
It's been over nine months since we lost our sweet Jilly girl, and I still don't think more than a few minutes go by when I don't think of her. She is on my mind almost constantly. Sometimes it's sad, but other times, I'm able to think of her and smile. In just a few days, she showed us what we're here for, she showed us what it means to love someone with your entire heart, and she gave us more strength and courage than we've ever had. I know I will ache for her until the day I die, but I'm also hopeful about the future. Our promises to her to try to be happy again were what got me out of bed for at least a couple of months, and there are still days that I need her inspiration to function. It gets better as time goes on, even though there are moments when it feels like the sadness is worse than it's ever been. We'll get it through it, though, because we can't let down our little girl.

Megan blogs at http://afterjillian.com

and can be contacted at megan@afterjillian.com