Author: Lauren

Meet Katie!

Hello! My name is Katie Bommarito and I am the new Executive Director of Catherine Cares. I am beyond thrilled to take on this role with such an incredible organization.

Over the years, I have witnessed the beautiful and heartfelt mission of Catherine Cares come to life through the donations of Heartbeat Bears & restaurant and fuel gift cards to families whose babies receive a life-threatening diagnosis.  During these unthinkable circumstances, we often don’t know what to say or how to comfort a hurting family. Through their own grief, Lauren & Wayne Turley created this nonprofit to let families know they are not alone on this journey. The Heartbeat Bears give families the gift of the sound of their baby’s heartbeat. It is painfully sad to think about, and yet, incredibly beautiful. Expecting a baby is an exciting and overwhelming life experience. Sadly, unfortunate situations happen and it leaves parents and their families hurting, confused, and unsure how to move forward.  Catherine Cares’ Heartbeat Bears provide comfort, and a tangible reminder of a sweet and loved baby that will be cherished forever.

I am truly honored to be part of Catherine Marie’s legacy to give families a sign of love, and hope that they will weather this storm. Together, our Catherine Cares team, looks forward to partnering with additional hospitals, reaching more families, and expanding our services to discover creative ways to support all family members embarking on this difficult journey. 

This was the moment I refused to think about or prepare for in advance. As a planner, a Type A personality, my mind wanted to be prepared for every possible situation but I just couldn’t with this one. My heart was in charge in this moment. My heart had physically ached every day since the diagnosis 14 weeks ago. My heart was broken and now here we were. Everything had played out. And here I was at the very moment I prevented myself from thinking about or preparing for. This was the moment my heart was dreading.

I had given birth to our second daughter 12 hours earlier. And now I was being discharged. The orderly was pushing my wheelchair out of my postpartum room. I was leaving with empty arms. My daughter had just passed away 11 hours ago. I was leaving the hospital without my new, precious baby girl.

—–

Mid-September 2014, I was 20 weeks pregnant with our second child. Our oldest, Madeline, was almost 19 months. My February 2015, due date meant our two children would be exactly two years apart. We were slowly preparing for this next stage of parenting: changing two sets of diapers, sleep deprivation, nursing, where to put our second child in our two bedroom home, how to balance a toddler with a newborn as well as all of the other joys that come with finding out you are expecting your second child.

We scheduled our regular OB appointments and ultrasounds. We decided to skip genetic testing again. There was no reason to be concerned and we wanted the gender to be a surprise in the delivery room with this baby as well. Besides chasing around a toddler while being pregnant, this pregnancy was moving along just like my first – par for the course.

My 20-week growth ultrasound was scheduled for September 22. We woke up that morning having no idea this would be the day our hearts would break. This was the day our lives were put on hold. Our world stopped. This was the first day of our new, devastating journey and when we became aware of the very short time we would have with our second daughter, who we named Catherine Marie.

It was at this appointment we first learned about the long list of health concerns for our Catherine:

Several heart defects.

Water on the brain and other brain abnormalities.

Intestines in a pouch outside of her body.

Not measuring at the appropriate gestational age.

Left Hand clinched.

As the doctor shared her list of concerns, my heart immediately began to hurt. As worried and shocked as I was sitting there listening to this long list of issues, I kept asking myself “How am I going to be a good mother to Madeline when my world is shattering around me?”

As a result of this appointment, time stood still for our family. We didn’t know exactly how things were going to play out. But what we did know was that it was highly unlikely we were going to bring our beautiful baby girl home with us. Her sweet body was not made for this world.

As we tried to accept this devastating reality, the rest of the story was completely up in the air. Would Catherine make it to her due date? Would I go into preterm labor?  Would she be liveborn? How long would we have with her? Would she need to spend time in the NICU? Would Madeline be able to meet her little sister? Would we have time to baptize her? Would other family members meet her? Where would she be buried? What did we want her funeral to be like? It was all consuming, extremely emotional and overwhelming.

I remember rocking in the recliner at home after my 20-week growth ultrasound wishing I could fast forward the next 20 weeks. I wanted to know how everything played out so my questions could be answered. And yet at the same time, I wanted to extend and stretch out this pregnancy as long as possible to be physically close to Catherine and to get to know every little thing about her while I still could.

As the weeks rolled on, we experienced great love and support from family, friends and our outstanding doctors and nurses. We soldiered on in between doctor appointments and ultrasounds. Crying and trying to prepare became part of our regular routine. We included Catherine in everything we did. We celebrated Halloween, Thanksgiving and Christmas as a family of four. No matter how hard we tried to keep on living, it was always in the back of our minds… What does Catherine’s journey look like?

My due date was 7 weeks away. My last ultrasound showed no signs of pre-term labor. My doctor even thought I might go full term. But that wasn’t Catherine’s plan. Late on December 29^th I went into labor while I was trying to fall asleep. I waited a few hours to tell Wayne because the contractions were mild. I needed some time to process what was happening. And I needed him rested. I was strangely calm. About 2am, I finally woke Wayne up and we called the exchange. My doctor happened to be on call. She wanted me to come to the hospital, but I could wait until my contractions became more regular and/or intense. After hanging up, we decided to get ready for the hospital anyway. We weren’t going to sleep at this point and we had a few things to take care of like packing our bags. My sister arrived to stay with Madeline. She helped me locate a little baby outfit of Madeline’s for Catherine to wear. While we were moving the tub, I had to pause while I contracted. With a 25 minute drive ahead of us, we decided it was time to go. We left for the hospital at 4:30am on December 30^th. On the way my contractions became much more intense. I was now bracing myself and breathing through them as they checked us in at triage. During the exam everyone was surprised to discover I was 100% effaced and 8cm dilated. This kicked me into transition. I was experiencing transition in the elevator up to the delivery room while sitting in a wheelchair. This part, in particular, was no fun. Approximately 8 doctors and nurses were waiting in the delivery room for us. Some were there for me and my care. Most were there for Catherine.

I wasn’t in the delivery room long before it was time to push. I was nervous about this part because of my first experience with labor. I labored with Madeline for 27 hours and pushed for 3 of those hours. Her delivery ended in a c-section. I did not want another c-section for many reasons: being at the hospital for days recovering most likely without my baby to hold, having to recover physically from major surgery, being away from Wayne, being away from Madeline who really didn’t understand what was happening around her, and just being alone sitting in the hospital. I did not want to be alone. I needed to be surrounded by those who love me in a familiar space.

Things were happening so quickly, there was no time for an epidural. I was going to have to bear down feeling every single sensation that comes with a drug free vaginal birth so I could meet my baby girl.

It was time to push. I pushed twice. It was like I had never done this before. I knew I wasn’t doing it right. My mind started to wonder, “Can I do this? Am I strong enough? I should have taken a refresher course. I do not want a c-section.” I could tell I was going to a not so good place in my mind which was affecting me physically. I had to set myself straight. I began screaming at myself… all in my mind that is, “Listen here, Lauren. You ARE going to have this baby vaginally. You don’t have a choice. So you gather up every ounce of strength you have and you push that baby out.  You CAN and you WILL.”  I asked the nurses for a few pushing pointers and I got to it. It worked. She began to move. We were doing it.

Twenty five minutes later, Catherine Marie was born at 6:45am. She was only 33 weeks, 7 weeks early. She weighted 2 pounds 5 ounces and was 15 inches long.

After that last push and I knew Catherine was here, the first thing I heard was Wayne ask for us, “Is she alive?” Something I never pictured us having to ask right after I gave birth. They told us, “Yes”. But that is all I knew. Catherine was taken over to the warming bed. Doctors and nurses began working with her while I was dealing with the after birth. I asked Wayne to stay with Catherine.

Not having given birth vaginally to Madeline, I did not appreciate the wild adrenaline rush one has after giving birth with the wave of emotions and hormone releases. I became very chatty.  I’m not exactly sure what I was saying. What I didn’t realize from the delivering bed was what was happening at the warming bed. As Catherine’s father, Wayne was bombarded with questions from the doctors regarding our wishes for Catherine after birth. The medical team had to double and triple check decisions before taking any action. Time was of the essence so these questions came at Wayne fast and furious. It was overwhelming and unexpected but so was everything thus far on Catherine’s birthday.

Everyone in the room knew our wishes for Catherine was comfort care, not extraordinary measures. Part of comfort care is to administer an oxygen mask, if required, to help with breathing right after birth. Catherine was not getting enough oxygen which was evident by her gray appearance. Once the doctor had his affirming answers from Wayne, he administered oxygen. Wayne was also asked if we wanted Catherine baptized. We wanted Catherine to be baptized by the same priest who baptized Madeline… if there was time. Wayne asked me what I wanted to do for her baptism. I was not understanding the severity of the situation from 15 feet away so I was asking questions. Unbeknownst to us someone called the hospital’s on call deacon while we discussed the situation. About a minute after we decided to have Catherine baptized by the on call deacon, he appeared in the room. Thank goodness someone took action before we did. Catherine was baptized with Wayne and two nurses by her side. The two nurses were declared her godparents. (We had her certificate changed after the fact to reflect her actual godparents, but we appreciated the nurses filling in.) Catherine was baptized and was breathing on her own although it was shallow. She was not in any pain. She was so peaceful. It became clear by the doctor’s comments, Catherine would not be with us long. It became everyone’s priority to get Catherine swaddled and into my arms as quickly as possible.

Even though it took some time after birth, Catherine and I finally met face to face. My Catherine was in my arms snuggling with me. The doctors had long lists of what wasn’t “right” about her body, but to me she was perfect. She had 10 fingers and 10 toes. Her beautiful face was angelic. All I could do was stare and stroke her little cheek. I talked to her. I told her how much I loved her and how happy I was to finally meet her. I told her about her big sister. Wayne was at the head of the bed looking over my shoulder taking in the moment as well. We were together loving on our baby.

What we didn’t realize right away was what was happening around us… which was nothing. Nothing was happening. The delivery room was full of doctors and nurses and not one person was moving, charting, cleaning up or taking vitals. The room was still. Tears were quietly being shed and wiped away by many doctors and nurses. Body language was communicating sadness and respect. Our Catherine’s life was being honored in the stillness. The doctors and nurses, most of whom we barely knew, were grieving right along with us. They were physically surrounding us with love. It was a powerful and beautiful moment we will never forget.

After some time, the staff excused themselves. Our family was trickling in to meet Catherine, to shed tears and give hugs. Madeline spent time with her sister, but it was all overwhelming for her being only 22 months old. And she wasn’t so sure she liked seeing me holding another baby – an age appropriate response regardless of the situation.

It was about an hour after birth. Catherine and I were snuggling and I could tell our Catherine was gone. It was peaceful and free of pain. But I just knew. I asked the nurse to check for a heartbeat. She couldn’t find one. Our Catherine’s journey was finally over. But our journey, our grieving, our new normal, our story as parents of infancy loss was just beginning.

We spent time with Catherine after she passed. For me, this wasn’t strange or uncomfortable. As her mom, I was craving as much time with her as possible. I needed to see her, hold her and kiss her. I needed to insure she knew how much we loved her. Professional pictures were scheduled for that afternoon. I was able to dress her for our pictures. I am grateful for this opportunity to do at least one of my mothering duties. We treasure these beautiful pictures.

Eventually, it was time to officially say goodbye. I had a few minutes alone with Catherine. I held her close and tight. I kissed her face. I blessed her forehead. I couldn’t say goodbye. So I whispered into her ear, “I love you, baby girl. Until we meet again.” I handed her to the nurses. And that is the last time I saw our baby. Wayne and I hugged and cried.

It was unknown for a while if my body was well enough to be discharged before Madeline went to bed that night but the doctors thought it might be possible. Later that afternoon, I was given permission to leave. I was discharged just 12 hours after giving birth.

Leaving the hospital was bittersweet. I wanted to be home. However, for me, the absolute hardest part of this day was still to come and I knew it. Of course, it was difficult and extremely painful to say goodbye to our Catherine earlier that day. But I was about to embark on my first and biggest obstacle as a mother of infancy loss. While my mind knew it was only her body which remained at the hospital, this was the first time I would be physically separated from her. Sure, we will meet again someday, God-willing. But for now, my mothering responsibilities were over just as quickly as they began and nothing about that felt natural.

Wayne helped me into the car. As we pulled away from the hospital and the separation between me and Catherine became greater and greater as we journeyed home, all I could do was wail. It was a cry I have never heard me cry before. It was more than just sadness. It was a release of all of the physical pain I was feeling right at that moment. It was the beginning of my journey with grief. It was a mother falling apart. I cried the entire 25-minute ride home.

It was just after 7pm on Catherine’s birthday as we headed home. Wayne and I did not want to go home to an empty house so we asked our family to join us for some pizza and drinks. Bringing your baby home from the hospital is a joyous… somewhat terrifying…experience. Being robbed of that opportunity and actually dreading this very moment, we couldn’t imagine being alone. Our family helped to fill that void. Eventually people began to leave. Wayne and I were so tired and emotionally drained, we were actually able to get some sleep. This was a good thing as tomorrow we would officially start our messy, emotional and uncomfortable lives as bereaved parents.

To read Catherine’s fathers perspective of Catherine’s birthday/day she went home, click here.

To read Wayne’s perspective of Catherine’s birthday/day she went home, click here.

We knew from the beginning our Heartbeat Bears were very unique. They were designed to provide comfort to the recipient while being user-friendly for the individual recording the heartbeat. Of course, our initial target audience was our Catherine Cares’ families – families of babies who receive a prenatal or newborn life-threatening diagnosis. But even while we were in the designing stages, we believed our bears would service additional purposes… we just didn’t know where they were needed at the time. Earlier this year we discovered one of those purposes – an important and impactful purpose for our Heartbeat Bears.

In the spring of 2019, the St Louis Cardinals hosted a Transplant Awareness Day at Busch Stadium. You might remember the news story of a donor’s family listening to the heartbeat of their brother within the chest of the heart recipient. It was an emotional and coincidental meeting. A very special bond and friendship started that day all because a young man named Donovan made his wishes very well known – he wanted to be an organ donor.

This story left an impression on our organization. The emotionally raw video of Donovan’s family desperate to feel connected to their brother through the sound of his heartbeat was a feeling we could most certainly relate to. We knew very quickly we needed to get this family a Heartbeat Bear.

Early in December, we met with Donovan’s sister, Savannah, and the heart recipient, John, and his family. John brought a heartbeat recording from his last cardiologist appointment. We recorded Donovan’s heartbeat within John’s chest on 8 Heartbeat Bears – one for each member of Donovan’s family. It was a special afternoon. We aren’t usually the ones making heartbeat recordings. The heartbeats for Catherine Cares’ families are usually recorded at a hospital or doctor’s office. But this afternoon, we were responsible for capturing the recording. Those 8 bears were on a very special mission which we had to help them fulfill. We had a unique sense of responsibility for those 8 bears. It was intense!

While making the recordings was our focus, there was more to our time together. We were getting to know two very special families. While we started as strangers and while each of our three families have different stories, we were all connected through loss, gratitude and love. We shared our stories with each other. We cried together. We hugged. We wrapped the newly recorded Bears to prepare them for their ultimate destinations. And we took pictures to remember our time together.

In preparation for this gathering, I was worried about the logistics and making sure we had what we needed to complete our tasks. What I didn’t prepare myself for was the real emotions from our time together. It was a profound experience. And it was a privilege to be able to prepare the Heartbeat Bears for Donovan’s family.

The following week, Donovan’s family received their very special gifts.

Watching the many emotions on the faces of each family member reminds us how important memories of loved ones gone too soon are. Each person held their Heartbeat Bear with great affection and care. It is more than a teddy bear; it is a tangible and direct link to their son, brother and uncle. To this family, the Heartbeat Bear is priceless. Mission Accomplished!

Catherine Cares’ ability to provide heart donors’ families the gift of their loved one’s heartbeat within a soft, cuddly bear is yet another powerful reason our Heartbeat Bears are so special.

As for Donovan, we are in awe of his selfless act and the gift he gave to John and his family.

And we are honored to play a very small role in uplifting Donovan’s family this holiday season.

~Lauren  

Our Catherine has two sisters, Madeline and Hannah. Madeline is older than Catherine. Hannah is younger. Madeline has vivid memories of Catherine. At this point, Hannah is still too young to understand that she even has another sister despite the fact she replies with “yeah” when we talk about Catherine. (Maybe on some level she really does know about her sweet sister in heaven though.)

Madeline and Hannah’s experiences with their sister, Catherine, are drastically different. Madeline is a major part of Catherine’s story. Someday we will explain to Madeline what an important role she played throughout my pregnancy with Catherine from the “ignorance is bliss” first half of the pregnancy to the growth ultrasound which completely devastated our world to the day Catherine was born and passed an hour later. Madeline gave us purpose. Madeline kept us smiling. Madeline gave the best hugs when we were sad. Madeline reassured us that we were capable of being good, attentive parents despite our broken hearts. Madeline did all of this at just a year old. Madeline was a key player during Catherine’s journey. We needed her as much as she needed us. 

Even though Hannah never met Catherine here on earth, Hannah’s position in the family is no less important. As our rainbow baby, Hannah gives hope. You can feel it in her outgoing, silly, headstrong personality. She is determined to insure her role is not overlooked and greatly appreciated. She brings quite a smile to all of our faces. She, too, gives some really spectacular hugs! And Hannah is only a year old.

Madeline was 22nd months and 5 days old on the day Catherine was born and passed. Over the last month, as Hannah has been approaching this exact age, I’m shocked at how much younger Hannah seems to me compared to Madeline at the same age. Maybe it’s because Hannah is my baby and I wish I could keep her little as long as possible. Or maybe it’s because Madeline was forced to grow up a little quicker due to the grief and sadness she witnessed at such a tender age.

Regardless of the reasons, today Hannah is 22 months and 5 days old. Today is September 22nd. Today is the 5th anniversary of my growth ultrasound with Catherine alerting us to all of the doctor’s worries for our baby girl. Five years ago today our unexpected and devastating journey with Catherine began. I vividly remember on this exact date 5 years ago rocking in the living room, crying while staring into space, rubbing my belly feeling physically sick from my broken heart. I remember wishing I was months if not years removed from that very moment so the intensity of the physical ache was softened. So all of our questions were answered. So our baby’s story had played out. So all of our worries were no more. The burden felt so so heavy that night. It felt impossible to deal with and yet deep down I knew I could. I just didn’t know how yet. I had a lot to process that night. 

This is a sad anniversary for us. Having said that, I can’t help but notice the incredible connection between Hannah’s age today on this anniversary and Madeline’s age on Catherine’s birthday. It’s these connections, these realizations, these subtle nods that give me hope. They give me comfort. They give me reassurance. And now that I am five years removed from that very night, I notice that the pain is still there. It has softened. Our questions were answered. Catherine’s journey was short but her positive impact on this world continues every day through Catherine Cares. We did find joy again especially in our little girls. But I think often about that mom rocking in her living room on the night she learned her unborn baby is not well. I want to hug her and remind her she is strong. She is capable. It won’t always be easy, but she can do this. And she is most certainly not alone. 

Another 4 weeks have passed. Man, they go by quickly. Time for another appointment with our doctor, Laura. I wasn’t quite as emotional at this appointment. I was feeling pretty good about myself since I have cried through every other appointment to this point.

This started as a typical appointment- how are you feeling? How are both of you doing emotionally? What questions do you have? We also shared with Laura the progress we have made on the Catherine Cares front. It was a nice conversation.

Towards the end of the appointment, Laura informed us I was far enough along to start scheduling appointments every 2 weeks. Ugh. The first sign this pregnancy is coming to an end. I was so excited for this point in the pregnancy while pregnant with Madeline. Yet another reason this pregnancy is just so different.

Laura also suggested we needed to take care of 3 things by the end of December: Have a plan in place for Madeline’s care when I go into labor, pre-register with the hospital, and pack a hospital bag. That’s a dose of reality I wasn’t ready for.

Tears flowed.

With Catherine’s syndrome, it is possible I will go into pre-term labor. In two weeks at my next appointment, I am scheduled for an ultrasound. It is sometimes possible for the doctors to see signs of preterm labor in ultrasounds. We will see if I am showing any signs at that time.

We hugged and parted ways.

We will be back in two weeks.

It is December and we are getting closer and closer to Catherine’s due date. There were two things I wanted for Catherine’s arrival—a little comfortable outfit and a small hat for her precious head. I have been searching numerous stores for a comfortable outfit. I could not find anything I liked. And many of them seemed much too big for the little baby we were expecting. If Catherine goes to term, we were told she will be approximately four pounds. Madeline was 6 lbs 8 oz and she looked like a peanut. I could not picture a 4-pound baby. What I do know is newborn clothes looked much too big for such a little one.

I also wanted a hat. Madeline’s doctor’s office received a generous donation of handmade infant hats. My niece received one after she was born 11 months ago and it was perfect. I knew I wanted Catherine to have one. Madeline happened to need a booster shot so this was my chance to ask for a sweet little hat.

The nurse administering Madeline’s shot was new and didn’t know about the hat donations. I explained why I was asking. After hearing Catherine’s story, she was on a mission to locate the stash of hats. There were two more hats left—a blue one and a yellow one. I chose the yellow one. It was precious. As small as the hat was, I wondered if it would be too big for Catherine. I won’t know until we meet face to face.

This was the first item I collected for Catherine’s arrival. The reality of what was coming was starting to set in.

I cried the entire drive home.

Thanksgiving is probably my most favorite holiday. I enjoy how the entire holiday is focused on family, friends, and food rather than gifts. Wayne and I have hosted a Thanksgiving lunch for the Turley clan for the past 4 years. We really enjoy hosting. Some thought we were crazy for taking that on again this year with everything we have going on with Catherine. But we appreciated the distraction and the chance to feel normal this holiday.

This Thanksgiving was going to be extra special as this was when we planned to share our Catherine Cares idea with our families. We believed this would be a neat way to kick off the holiday season- sharing some joyful news rather than focusing on all of the sadness.

After we finished lunch, we asked the Turley clan to come into the living room. We created a little Powerpoint presentation (we love Powerpoint presentations) with our beautiful Catherine Cares logo (created by our friends, Ken and Julia at Spry Digital) as well as a few notes describing our idea. This was displayed on our television. I almost made it through our presentation without shedding a tear… almost. When we finished, you could have heard a pin drop. The family was speechless. There were a few tears. Eventually, Steve broke the silence, “This is really great guys.” He gave me a big hug.  The rest of the family followed suit.

Later that evening, my mom, dad, and sister came over for a visit. Our Bommarito Thanksgiving was on Friday this year. We were going to wait to share our Catherine Cares idea with the entire family on Friday, but based on the Turley clan’s reaction we couldn’t wait. Their reaction was the same- tears and joy.

Knowing our families were completely supportive and thrilled to see us channeling our grief in a positive way made this Thanksgiving extra special.

It was nice to bring our families some joy to what promises to be a rather emotional holiday season.

Now that Catherine has a name, we can focus on her legacy. Wayne and I have a strong desire to do something to help others and create a legacy for our Catherine.

When the news of Catherine’s diagnosis was fresh, friends and family provided meals for us. We would get a phone call asking if we were home so a meal could be dropped off or an Edible Arrangements bouquet would show up at the front door. We were extremely appreciative of these generous acts of kindness. I do not care to go to the grocery store when my life is cruising along in an acceptable manner. But when my life is in shambles, going to the grocery store feels like running two marathons on the same day without training. These meals meant the world to us.

As we reflected on the first few weeks of this journey, we were trying to figure out a way to take what we had learned and experienced and find a way to help others embarking on their own journey with a child who is ill.

What if we could provide meals for families when they first learn their child’s diagnosis?

Obviously, we can’t physically prepare meals for everyone whose child receives a devastating diagnosis. But we can provide gift cards. That might just work.

What should we call this program?

“Catherine Cares” crossed my mind the day we named Catherine. Later that same day, Wayne and I were washing the cars. At one point he walked passed me and said, “Catherine Cares.” My jaw dropped. “That is the exact name I was thinking,” I replied. We both smiled. We knew we were on to something.

Before we got too far in the planning process for establishing Catherine Cares, we wanted to run this idea passed our doctor. At our next appointment in early November we asked Laura if families would appreciate gift cards to restaurants when they learn their child is sick. She said there is a huge need for this. In fact she was excited at the potential. She confirmed, to the best of her knowledge, nothing exists like this for families. Then we shared the name: Catherine Cares. She didn’t reply right away. The name gave her the chills. She loved it. Laura was 100% on board.

We wanted to run our Catherine Cares plan passed Karen, our Fetal Care Team nurse coordinator, as well. What will Karen think since we are still in the middle of our own journey?

We called it- Karen loved the idea, but she was obviously worried we were trying to take on too much since the hardest part of our story had yet to occur.

We reassured Karen that Wayne and I will be open and honest with each other. We will speak up if we need an emotional break from Catherine Cares and the other one will respect that need.

We also explained to Karen how we needed this. We needed to be productive and focused on something positive. This was our outlet for our grief. We could not sit by and wait with our grief any longer. We had not been able to control anything about this situation. But what we could control was how we chose to handle this situation. Catherine Cares was our choice. Catherine Cares is more than just a nonprofit to us. It is our daughter’s legacy and we are determined to make it a powerful one. Catherine Cares is family.

Karen could see she wasn’t going to change our minds. We appreciate her love and concern as well as her support.

Now it was time to get to work. There are too many families facing a similar journey. They need to know they are not alone.

I feel Catherine every day now. Since she is not as big as her gestational age suggests, it has taken longer for me to feel her more regularly. She pushes against my stomach with her feet or her head or her back for long stretches of time. These little daily jabs, kicks, and head butts are absolutely wonderful feelings to experience. They are little love taps from our baby. It makes me feel even more connected to her than we already are. I find myself talking to Catherine more. I noticed I engage Madeline in conversations about her little sister more regularly. Madeline started kissing my belly and saying, “Hi Baby,” which is music to our ears. Wayne is able to feel and see Catherine’s movements. Our family of four is bonding and connecting on a new level like we would with a typical pregnancy and it feels really great.

One day it hit me, “I finally get it!”

Karen, our Fetal Care Team nurse coordinator, has been saying from the beginning of this journey that she wants us to enjoy this pregnancy. I have been privately frustrated by these remarks. Why would she say that when she knows what the end of this pregnancy means?

But I FINALLY understand what Karen has been saying to us. Now that I can feel Catherine’s movements more regularly I AM enjoying this pregnancy. As a family, we are celebrating and bonding with Catherine. We have no idea how long Catherine will be with us. We have to cherish every little moment with her. And we are. She is not a diagnosis. She is our daughter. She is Madeline’s little sister. We are a family of four.

Thank you, Karen, for encouraging us to enjoy this time with Catherine. It feels good to find the joy in this time together for we do not know how long it will last.

I like Halloween, but I don’t go crazy over it. Ten years of teaching 13 & 14 year olds on Halloween candy sugar highs tend to drain one’s enthusiasm for the holiday. I will say it is much more fun having a small human to dress up in cute costumes though.

For some reason, which I couldn’t explain at the time, I was extremely excited for this Halloween. I bought Madeline’s costume many weeks before Halloween (the extent of my sewing abilities is to replace buttons, barely). I was proud to be prepared even with everything else going on in our lives. We had a great day planned with lots to do and many people to visit. I was really excited about it.

Our Madeline was the cutest cupcake you ever did see- we can say that because she is our kid and this is our blog. Madeline was in great spirits. Wayne and I were smiling. Today was going to be a really nice day.

Madeline and I, along with my sister and Madeline’s cousins the construction worker and a mini-Richard Simmons, surprised Aunt Amy at work. Madeline and I visited Daddy at work in costume, of course. After her nap, we had dinner at my parents. We “trick-or-treated” at one location- our parish rectory. And lastly, we visited Wayne’s cousin Tracy and her husband Steve. It was a jammed packed day and I enjoyed every minute of it.

Upon reflection, I realized why I was overly excited about Halloween this year: I was craving a normal day full of fun events to distract my mind from the life altering situation we find ourselves in. Every day since Catherine’s 20-week ultrasound, I have replayed the events of that appointment as well as the diagnosis phone call 10 days later. After replaying those events, my mind tries to “plan” the numerous scenarios we could face with Catherine’s arrival.

Will Catherine survive the pregnancy?

Will Catherine survive labor?

Will Catherine be live born?

How long will we get with Catherine?

Will I go into pre-term labor?

Will I be strong enough to have a VBAC?

Will Madeline and Catherine meet?

How will Wayne and I handle the emotions of that day?

And the list of questions goes on and on in my mind- every day and every night. It is overwhelming and a heavy burden to carry. I’m not good at relinquishing control. In this situation, I cannot control a thing. I know everything is in God’s hands. I know God will be and has been with us every step of the way. So when my mind so easily goes down the dark path of questions, I try to remember to stop and pray to settle my thoughts. When I do this, it is amazing how I find peace… until I let my mind wonder, again. But I will take any relief I can get.

Today’s fun Halloween plans were a much needed break from my own thoughts and worries. I can worry, again, tomorrow.