Remembering Faith Elizabeth

Remembering Faith Elizabeth

Monday, April 26, 2010

An introduction

I told Jamie that I wanted to start a blog...if you know Jamie, you know that he is not what most of us would call "tech savvy." I think he knew what I least, in his world, it meant that I had an outlet for my 5,000 words a day - all of you. So, here I am. You'll notice that I've named our blog (after much thinking and contemplating) "Walking with Faith." I feel like we have walked 10,000 miles in the last year or so - with faith keeping us up, with faith keeping us whole, and with Faith in our hearts - each and everyday. If you know us, then you know our story. If you don't know us, then let me fill you in. I promise, this probably won't be brief...

We have been married for almost three years and have been together for nearly six. My husband is, without a doubt, my best friend. He is my rock, my center, and my other half. We are pretty traditional in many ways...I do most of the inside housework and he does most of the outdoor/mowing the lawn stuff. We have been through more in the years of our relationship than many people will go through in a lifetime together. And yet, we are strong. I have learned that - we are stronger than I ever knew. We have been tested, repeatedly, and we are still here, hopeful. We often joke, "We've had the worse, the sicker, and the poorer. We are ready for the best, the health, and the richer!" By far, our greatest test has been the last year and surviving the loss of our beautiful daughter, Faith.

See, we did things consciously...we dated, we got married, we planned to have a baby and waited until we were ready, despite the fact that we were among the last of our friends to have children. So, off the pill I went, expecting at 30 for it to maybe take a few months. It did not. There are no fertility issues here...the first month we weren't actively preventing it - boom - I was pregnant. Thank you mom for your genes. : ) I was the pregnant person that everyone envied - never sick a day of the pregnancy. Other than exhausted during my first trimester, I enjoyed being pregnant and so along we went. We painted a nursery and with the help of my dearest friend in the world, Sarah, began planning a baby shower. The 20-week ultrasound came and we had decided not to find out if the baby was a boy or a girl. The doctor did tell us that they found something on the scan that was abnormal. Called a choroid plexus cyst, they occur in about 1% of pregnancies - of those, 99% turn out to be nothing and occur in otherwise normal pregnancies. When that little blip came up, the doctor recommended that we do the bloodwork we'd previously not done because, according to the doctor, we were as low risk as could be. Okay, bloodwork done - and all came back normal as could be. No increased risk of anything. At a level 2 ultrasound, the doctor declared, "Everything looks good. You have a greater risk of a compliation from an amnio than you do that there is something wrong with this baby." Whew - sigh of relief breathed. "We're going to watch you on ultrasound - just in case."

Eight weeks and a couple of ultrasounds later, we were back for another one. There the ultrasound tech said we needed to see the doctor and have an additional scan...our baby's stomach looked small, her growth had slowed down, I had too much amniotic fluid...major alarm bells were going off. So, off we went to the doctor, where the perinatologist included the discovery of a heart defect called a ventricular septal defect (VSD). We were shuffled between a couple more doctors, leaving with an amnio scheduled for the following day. By the way, this was all on our 2nd wedding anniversary. It better be the worst one we ever have.

The doctor that performed the amnio said, "In all the years I've been doing this, if there is a problem with this baby, you will be the first incident I've ever seen of a patient with normal bloodwork and no risk on the screens come back positive for a choromosomal abnormality." By the way, this doctor no longer attends deliveries because he's closing in on retirment. You do the math - I'm pretty sure we've been written up in medical journals. By the time I had the amnio done, I was 31 weeks pregnant. It was July 8, 2009. Two agonizingly long days later, we got the phone call "...negative for Down's Syndrome...negative for Trisomy 13...negative for any problems with the sex chromosomes." Whew - wait, she wasn't finished talking yet, and I heard a "but" coming. "...but I'm afraid the amnio was positive for Trisomy 18." Dead silence. Me, sitting on the couch. My husband working 40 minutes away. "Do you know anything about this condition?" I told her what we knew, "We've been told babies with trisomy 18 don't survive." She replied, "That's right...I'm so sorry." I think I hung up on her then. Not on purpose, but I was in shock.

The next few minutes are a bit of a blur. I truly didn't know what to do next. I called my husband, sobbing, and simply told him he needed to come home, which he of course did. Then I paced and walked in circles in my living room. I didn't want to tell anyone before I told Jamie, but I couldn't stay there by myself until he got home, a likely 30 or 40 minutes. So, I called my parents - in Ohio and tried to incoherently explain the phone call. My poor dad answered the phone - he has a bad track record of answering the phone to a sobbing daughter. He woke my mom and she was able to talk me down a little. My dad got on the other phone and called Sarah, who will forever now be known not as my friend, but as my lifeline. She whisked up their 2-year old and was on my doorstep in 10 minutes. And together we sobbed on the couch. She held me and I cried and cried. And she cried with me. Soon, Jamie came home and I told him. Right behind him was Marc - Sarah's husband and Jamie's cousin - and Jamie's lifeline.

Over the next several hours, people were called and gathered. My parents drove in from Cincinnati. Jamie's parents arrived for the evening, along with his older sister and her husband. Their company was invaluable that night. Sarah and Marc stayed, too.

The next several weeks were filled with visits to the doctor, horrible conversations about what our daughter's birth would likely mean, and other horrible moments that no ne should ever, ever have to endure. While pregnant with my child, we sat at a funeral home and picked out a casket for her to be buried in. One of my lowest moments, I assure you.

For many reasons, I was induced on August 14. At 9:27 pm, Faith Elizabeth was born in an uncomplicated, normal delivery. She came out and I heard the sweetest words I will ever know, "She has a heartbeat." We didn't know if she'd be born alive, so it was our miracle to know that she was with us. Laid on my chest, she was pale and not breathing well, but her eyes were open and she was there - and she was beatiful. Wavy, dark hair and perfect little features. 3 lbs. 12 oz. and 15 3/4 inches long. One day I will tell you about the weekend we had with her - the people she got to meet and the joy she brough to us. As far as we are concerned, we got our miracle. We got three amazing days with Faith. She fought to be with us and never gave up. We got to meet her and hold her and love her in the most uncomplicated and perfect way. And in the end, she was in my arms when she peacefully left this Earth. I brought her into this world and am privileged to know that I held her when she left it three days later on August 17.

The last almost nine months have been a roller coaster. We have been surprised by people - in good ways and in bad. We have seen the ways that Faith touched us and people in our lives. We have discovered that though she didn't weigh much, Faith had weight in this world.

So, that's us...and now, why I'm writing this blog...

I have been reading a lot of blogs lately (you can see the list of the ones I follow on the page.) Most of them are moms that are writing about losing a baby - to a variety of causes and reasons. One is a family that lost a son to Trisomy 18, the same condition that took Faith from us. One is a mom that has lost two sons to a genetic microcephaly. The others are mothers whose babies died due to a collection of bizarre anomalies. All of these particular blogs are written by mothers who knew prior to the birth that something was very, very wrong with their child and that their precious baby would likely not live. They all had that terrible moment when the words "incompatible with life" were spoken - and their worlds were never the same. This is the moment when their faith was tested - and when their true spirit was revealed. I tell you all of this to tell you why I am starting this blog - because it is my hope that my words and our experience will do for someone else what these women did for me.

I hope you enjoy our walk with Faith.


Sunday, April 18, 2010


So, I am suprised. Just after we lost Faith, I met a couple at a support meeting. The father told me, "People will surprise both good ways and bad." And they have. Mostly in good ways. Some people are not as lucky as we are...but we have a tremendous amount of support from family and friends. There are places and people with whom I know that I can talk about Faith all night long and they will not tire of it. But, I have been surprised by some people. Someone I work with, someone I would really only describe as a colleague, asked to form a team in honor of Faith for the March of Dimes March for Babies. So we are. This Saturday we will join other people and a team made up of our family and friends to remember her and to celebrate her; to know that though she didn't weigh very much, she had weight in this world. We will march so that other families do not have to endure what we have. We will march, rain or shine, so that someone else will get to bring home a healthy baby. And one day, Jamie and I will bring home Faith's siblings to this small house, to a house that is a home. We don't have much space, but we don't need much. We have each other and we have what life has given us; we have joy and we have hope and we have God.

People have said to me, "I don't know how you do are so brave." The truth is, I don't feel brave. There are many days that I feel as though I am being held together simply because falling apart isn't really an option. And then something happens...change, that is ever present in life, appears again and rocks my world. My dearest friend, the one I have counted on for almost a decade, to always be present in my "work world"...well, she won't be there next year. Kathleen is being moved to another building. And it rocked my world. It surprised me...and it made me sad. Like my mother has said, "Kathleen is a friend that will transcend work." She is right...we will still gossip about Grey's Anatomy on Thursday nights and she will still be my most amazing friend. But the first thing I thought was, "Kathleen won't be there on what would be Faith's first birthday." I always knew Kathleen would remember it...and now, she won't be there, physically present for what I suspect will be a very hard few days. I know she's always there...

So, we are preparing to have a houseful of people in a house that really can't hold that many people. But, they are my friends and I am so looking forward to including them in one day of the year that is about Faith...a day to honor her and to remember her. All because someone surprised me, in the best of all possible ways. So, thank you, Christina. You may never know, but you have surprised me in ways no one else has. And I so appreciate it.