The Blessing of Time

After having some time to reflect on the stories that were shared at the conference we went to a few weeks back, I have been struck by what a difference having time to prepare and adjust made in our experience, and what a gift that time was to us.

Don't get me wrong, receiving a diagnosis at 20 weeks and continuing the pregnancy is difficult. You have all the discomforts of a pregnancy, and later labor and delivery, with the knowledge that the reward for your pain will be fleeting and followed by intense suffering. You live in uncertainty about your health and the continuing health of your baby. Every aspect of your pregnancy that you might unabashedly celebrate in other circumstances, like kicks and turns, become bittersweet when you know those little signs of life will soon cease. Small things like going to the doctor's office, seeing healthy pregnant women or newborn babies, having to buy maternity clothes, or being questioned about your pregnancy become huge emotional chores. However, after seeing the fallout from a sudden and unexpected loss, I am really thankful that we had warning.

We had plenty of time to create a birth plan for Leah. This process was very empowering, as it gave us the opportunity to communicate our choices for how we would spend our time with Leah, and it facilitated our planning of that time. We had time to adjust to the idea of seeing our baby with anomalies, and learned of the benefits of holding her and spending time with her. We had the opportunity to arrange for a photographer, pick out an outfit, make blankets, and begin to think about her burial. Most importantly, we were able to have some family members come out for her birth, and stay at the hospital to support us and to advocate for our wishes.

Because we were prepared, our experience was incredible. We were able to focus on our Leah, and make memories with her.

Parents who are blindsided by infant loss usually don't have this experience. Grief and shock prevent them from advocating for themselves. They may not be able to make the decision to hold or see their baby, and since not all doctors will advocate strongly for this (despite the proven benefits of doing so) they can end up with deep regrets. Similarly they might turn down photographs, or only have a few snapshots taken by the hospital. Worst of all, without someone there to guard their interests, precious mementos may not be collected, might be lost, or worse, might be thrown out. After listening to some horrible, heart-wrenching stories about things that happened to some of these families, I am convinced that all parents who suffer a sudden perinatal loss need time and an advocate to assist them in navigating their decisions, and to gently push them to reconsider choices, such as not wanting to see or hold their baby, that statistics show parents overwhelmingly regret.

When we received Leah's diagnosis at our 20 week ultrasound, the doctor immediately offered us our choices, but never advised us to take time to think or to consult with a social worker or counselor. His best plan was to have "our problem" (known to us as Leah) "taken care of" the next day. It shocked us that he pushed us to terminate Leah, to quickly resolve our medical situation, without even giving us even a few minutes to talk it over. My health was not at risk, we had four full weeks to obtain a traditional abortion under Illinois law (after 24 weeks they send you to Kansas), and because Leah's diagnosis had a 100% fatality rate, we would be allowed to deliver her early at any time. At that early stage of gestation Leah had very little chance of surviving labor. Yet he still wanted us to act the next day.

The insistence on immediate action (when none was medically required) that we encountered in our experience, and observed in the experience of those with unexpected stillbirths, seems at odds with the goal of providing optimal mental, emotional, and physical care. It treats the body at the expense of the mind and spirit. It allows no time for your heart and head to process the experience. Our bodies are more than bags of organs, muscles, bones and blood. We should receive treatment with this taken into account.

Sharing Our Story

This week Jeff and I took part in a parent panel at a perinatal loss seminar for nurses in the Chicago area who work in Labor and Delivery and Neonatal Intensive Care Units. We were one of four families who agreed to share their stories. Two of the families had unexpected and unexplained stillbirths, and the other family believed they had a healthy pregnancy but found out within days following birth that their daughter would not survive for very long. As the only couple that had any warning and time to prepare for our baby's death, it was very odd to note the similarities and differences in our experiences. I am very grateful that we had a period of time to get ready for Leah's birth. As hard as it was to continue our pregnancy knowing that the outcome would be terrible, it is clear to me that the time we had to process our loss benefited us (and of course, benefited Leah, which is most important). We had time to make a birth plan, find a photographer, order an outfit, make blankets, and make the outlines of a funeral plan. We were able to have our family and friends surrounding us when the time arrived to deliver.

Hearing the stories of the other families was difficult. The hardest thing for me was seeing how burdened by grief they still were, when all of them had losses that were farther away than our loss of Leah. Honestly, half of what gets me through each day is the thought that someday things might get better. Seeing other parents in a place that doesn't appear to be much better than where I am right now two, three, or five years down the road was really discouraging. I came home from this event emotionally and physically drained. Based on what I saw the future looks grim. I struggled to do anything for the rest of the afternoon, and ended up settling on making a casserole for the freezer and doing some quilting because I just didn't have the energy for school work. I am thankful that we had a chance to share our experience so that hopefully other couples going through a perinatal loss will receive compassionate care.

I have previously shared how much having beautiful pictures of Leah has meant to us as we grieve. We have an almost completed scrapbook, a regular album, and pictures on our walls. Having those pictures has been a great comfort and a wonderful way to share our experience with our friends and family. One of the things that was very important to me yesterday was to emphasize the importance of pictures to our grief journey, and share with the nurses the mission of Now I Lay Me Down To Sleep to provide grieving parents with professional photographs free of charge. I had contacted our photographer, Deanna, and she sent me NILMDTS brochures to take with me, and I also brought a few of our photos. I was amazed that many of the nurses had never heard of NILMDTS, and was pleased to pass out almost all of the brochures and show off our photos of Leah so they could see the quality of the NILMDTS photographer's work. It was really nice to be able to share this resource with the nurses, and I hope that they will spread the word to other nurses and grieving parents.

Cuddly Blankets

At the end of our first ultrasound, our doctor told us to prepare for the possibility that the baby's heart would not be beating at our follow-up appointment in two weeks. Thus we had a very small window of time to prepare for the possibility of his or her birth. Since I was in California between the first and second ultrasounds, my mom and I went shopping for receiving blankets. Unfortunately, we couldn’t find anything that was perfect. Knowing that I only had one chance to wrap up my baby, I wanted perfect. All the blankets we found were so big, and I wanted something that wouldn’t engulf our baby. After searching multiple stores, I realized that I would have to make my own blankets to get what I wanted.

Mom and I spent an entire afternoon searching for fabric. I wanted to find something with either bunnies or squirrels, and I hoped to find two fabrics so that I could make a blanket for a girl and one for a boy. The first store we tried had nothing I liked, and I felt so discouraged. We tried another store, where we found some great options for the "boy" fabric. I decided on a blue background with white bunnies.

Finding a "girl" fabric proved more difficult, and I ended up settling on a Beatrix Potter character fabric on a green background since I couldn’t find anything I really liked in pink.

I picked out a soft white material as the backing for both blankets. It had a cute pattern of raised bumps on the back for a little added style. These bumps turned out to be a real lifesaver because they provided the perfect guide for sewing straight lines without having to measure and mark the fabric.

I began work on the blankets the very first afternoon back in Illinois. First, I cut the white material into a twelve inch square, which I pinned to the patterned fabric. Then I measured and cut the patterned material to create an overhang of ½ inch. I folded that in half and folded it over on top of the white material and then sewed it down. I folded in the corners so that they looked nice. I finished both of the blankets in that one afternoon.

Working on the blankets was difficult. That day I felt exhausted both physically and emotionally. Fear that I would go into labor and not have a blanket for my baby drove me to finish them quickly. Balancing the drive to finish with the desire to make the very best blankets possible proved a lot to handle. I nearly broke down the second time I had to seam rip a mistake. Yet even though that afternoon caused me a great deal of anxiety, the memory remains very special to me. I felt so helpless during that time, because nothing that I could do could make my baby healthy. I had a small window of time to care for and connect with my daughter. Making her blankets allowed me to lavish my attention and love upon her. I am so grateful that I had the opportunity to do something special for my Leah.

The Bunny Suit

After our confirmation ultrasound, the timing of our baby's arrival remained up in the air, and the ever present threat of a cord accident and stillbirth hung over us. Since we knew that each appointment with our doctor could yield bad news, we decided to gather the things we needed for delivery. We contacted Now I Lay Me Down to Sleep, I made blankets, and we ordered an outfit for our baby.

Finding an outfit for a very premature baby is a difficult thing to do. You are limited to white, frilly burial gowns and NICU gowns. The selection of outfits for people in our situation is rather dismal. I felt it was inappropriate to dress my baby in a burial gown while the baby lived. The NICU gowns offered a decent array of patterns and colors, but they do not look like "regular" baby clothes. Given our options, we decided on a NICU gown.

Thankfully, the internet gave us access to a number of sites with a variety of gowns and quick service. We decided to purchase only one outfit to bring to the hospital, so we chose a gender-neutral gown featuring bunnies in yellow, blue, and green on a white background. In the pattern the bunnies jump on the bed, pillow fight, take baths, and nap. Chuckleberries made the gown we chose.

We ordered a micro-preemie size one gown, which fits a baby up to three pounds. Choosing a size was difficult because we didn't know how long we would be waiting until the baby was born. We knew our baby would have shortened limbs due to dwarfism, but also we had some concern about the distortion caused to the baby's torso by hydrops, and we wanted to make sure that whatever outfit we chose fit over his or her tummy. Since Leah ended up coming so early, her outfit more than covered her. Even though we ordered a short-sleeved gown in the smallest size possible, when Jeff dressed Leah he still had to roll up the sleeves! He also used pins to make the gown small enough to fit her.

Making a Birth Plan

Pregnancy books and websites abound with templates for birth plans. However, when you have a negative diagnosis, many of those plans don’t fit your circumstances. Our hospital had a social worker that created a birth plan with us, and most websites that deal with neonatal death also provide templates.

Here is our birth plan. Notice that our social worker left out the part about the butt cheeks.

AMY COX AND JEFF KLUG

BIRTH PLAN

Listed below are our wishes for the labor and delivery experience during the upcoming induction of labor of our baby. We anticipate a vaginal birth, and understand that staff will try to honor these wishes, if at all possible.

Jeff would like to cut the umbilical cord.

After the cord is cut, Jeff would like to hold the baby.

If the baby is breathing, Amy would like Jeff to bring the baby to her to hold. If the baby is not breathing, Jeff would like to wash the baby before presenting him/her to Amy.

Amy and Jeff have asked that measurements of the baby be taken after they have held him/her.

Amy and Jeff would like to have prints made of the baby’s hands and feet. In the event this is not possible, they would like to have prints made of an alternative part of the body (to be decided at the time).

Amy and Jeff would like to have a cutting of baby’s hair, if existent.

Amy and Jeff have made arrangements with a photographer from "Now I Lay Me Down To Sleep" to take pictures of them and the baby.

Leah’s delivery went smoothly, so the hospital followed our birth plan exactly. We didn’t get a cutting of Leah’s hair because she was a baldy; everything else was perfect. Our theory with this birthplan, and the grief process in general, has been to do almost anything that others seem to find helpful. We keep everything, because you can always toss stuff out later if you decide it isn’t important. I think it is better to hold on to something extra than have regrets. I almost threw out my hospital bracelet (it was looking pretty scruffy), but someone stopped me and now I am so glad they did because I have it next to Leah’s in her scrapbook.

One thing that I wish I would have had was a plan for after birth. I was so exhausted after delivery that I couldn’t remember everything that I wanted to do or say. Our time was so short that it would have been wonderful to have a reminder list. My one regret with Leah’s birth is that I never sang to my baby. We spent so much time playing music and singing to her while she was in utero, and I had wanted to sing to her when she was born, but I got overwhelmed and forgot.