Category: Our Story

After learning our precious baby was a little girl, we started to think of names. Our focus changed to finding a name with a special meaning for this little baby who will not be with us for very long. We wanted a name to fit her story. For every name we suggested, we looked up the name’s meaning. If it matched our little baby’s story, it was added to the list. The list was getting long, but nothing was feeling right… yet.

Wayne knew his maternal great grandmother lost two infants. He remembered seeing their markers in the cemetery right by his great grandparents’ graves. We decided to visit these precious little ones to see what their names were. Maybe they would provide us with some much needed inspiration.

As a family, the three of us visited these two little babies’ graves. I had to focus on our mission of finding a name rather than the reality that some day we will be visiting our own baby’s grave.

Wayne led us to the right spot. There were two markers- one for a little boy and one for a little girl. The little girl’s name was Catherine Ann.

Catherine.

I loved it.

Wayne loved it.

It was on our list.

We went back to the car to get the list; which I kept in my purse. Catherine means “innocent” or “pure”. Catherine. Catherine Marie. Marie is my middle name with many family connections.

We let the name resonate as we visited other family members in the cemetery. Madeline has never “met” her grandmother- Wayne’s mom- so we visited with Granny Janet. Our Madeline is named after her Granny Janet- Madeline Janet. Madeline, having no idea what was really going on, helped clean the grass clippings off Janet’s tombstone. It was sweet. She was taking good care of her Granny Janet.

As we made our way back to the car, Wayne and I repeated the name out loud- Catherine Marie. We were falling in love with it. We found our baby’s name.

As we drove home, the car was very quiet as Wayne and I processed all of this. As we were falling in love with the name, we were saddened. It was exciting to have picked a name and yet it hurt our hearts to know we wouldn’t be able to use her name as frequently as we wanted to. While there was some joy to have finally named our baby, this wasn’t the same joy we had when we chose Madeline’s name.

The mere fact that we became so sad and reflective upon settling on Catherine’s name, we knew we had chosen wisely.

With a name chosen, this means someday there will be two little baby Catherines in heaven- Catherine Marie and Catherine Ann.

We called Wayne’s dad and step-mom, Momma Jean, to share Catherine’s name with them. They, too, were happy to have a name, and yet saddened at the reality of the whole situation.

Later that evening we went to my parents’ house for a quick visit. We shared Catherine’s name with them as well. Again, my mom, dad, and sister became sad right along with us. The combination of joy and sorrow is a constant theme for us right now.

After we all regained our composure, my mom shared with me that her mother lost a baby. This baby was a little girl as well. I knew Gram had lost a baby, but I did not realize they knew she was a little girl. Then mom said, “And her name was Catherine.” A third baby Catherine? I had no idea. Now we weren’t sure if her name was spelled with a C or a K, so we just decided it was a C. It makes for a better story.

In a few months there will be three baby Catherines together in heaven – one from Wayne’s side, one from my side, and one of our very own.

Thinking about our baby in heaven is not natural, but that is our reality.

Another decision of a long, long list has been made.

Catherine Marie—“innocent” or “pure”

Before we left the hospital, we met with another lady from a team within Mercy called Heart Prints.  The Heart Prints team is engaged when it’s a terminal situation.  While our meeting with this team may have been premature, we wanted to get some answers and direction.

Before we left the hospital, we met with another lady from a team within Mercy called Heart Prints.  The Heart Prints team is engaged when it’s a terminal situation.  While our meeting with this team may have been premature, we wanted to get some answers and direction.

After leaving the ultrasound area, we were directed to a private meeting room where we waited.  Soon, a lady named Maggie came in and introduced herself.  She sat in a glider chair and slightly glided back and forth as we talked.  She reminded Lauren and me of a sweet grandmother.  We instantly liked her.

Lauren was pretty emotional for this discussion so I did most of the talking.  Our first topic was Madeline.  We let Maggie know we had been telling Madeline that our baby is very sick.  Maggie recommended we change that approach as Madeline is inevitably going to get sick.  Maggie’s suggestion was to change the message to “We’re not going to be able to bring this baby home with us.”  Her words were a strong reminder of what was ahead of us.

We then started talking about various labor scenarios.  What would the process be if the baby was live-born?  What happens if the baby is still-born?  If the baby was live-born, there were many decisions which would need to be made.  The number and timing of those decisions would be driven based on how long our little girl would live (hours, days, or weeks).

Maggie kept reminding us we didn’t have to have this discussion now and we could wait.  But, we wanted to try to prepare ourselves as best we could so we continued talking.

Maggie asked if we had a name for our baby.  We didn’t.  While we had talked about names nothing really stood out to us yet.  We wanted a name with meaning.  Maggie offered a book she had to assist us with the name.  We took her up on her offer.

Maggie also asked if we had thought about taking pictures of our little girl.  This was something I had not put much thought into but my first thought was if she was still-born we would not take pictures.  It just seemed weird.  Maggie said she strongly recommended taking pictures regardless because the pictures would be the only visual memory we will have.  I wrestled with that idea.  It is a memory we will carry forever so why would we need pictures?  What would we do with them?

The topic then changed to what would happen after she passes and funeral logistics.  It reminded me of the process of when my mom passed many years before so sadly that was familiar.

Maggie asked if we had any more questions.  We didn’t so Maggie hugged us and said she would be praying for us.  We left and went home.  It was another mentally and emotionally exhausting day.

Last week was the first time in 3 consecutive weeks we did not have a doctor’s appointment, ultrasound, procedure, or awaited test results. It was such a luxury to have a “normal” week without the anxiety caused by the anticipation of an appointment or test results. But, it was time for another ultrasound appointment as well as a meeting with the Mercy Heart Prints coordinator.

Since it had been over three weeks since our last growth ultrasound, the focus is to see how our daughter is growing. The doctors were also hoping to get a better view of her heart and the defects.

Karen, our case worker, and Cassie, the ultrasound technician, were with us during this ultrasound. Laura, our doctor, wasn’t in so we were meeting another doctor in the practice, Dr Moore.

Dr Moore came in to talk about what she saw in the ultrasound images. Our daughter is growing, but she is still at least 3 weeks behind her gestational age. And now that she is bigger, Dr Moore was able to see her heart more clearly. She confirmed our daughter has two heart defects. The hole in her heart is not as large as they originally thought. They will not know the full impact of these defects until our daughter arrives. So Dr Moore said she might live a few minutes, hours, days or weeks.

WEEKS?!?

And she continued, “You might even be able to take her home.”

TAKE HER HOME?!?!

Please do not get us wrong. Wayne and I desperately want as much time with our daughter as we can possibly have. But the idea of weeks in the NICU or even taking our sweet and extremely ill baby home to eventually go to heaven with a toddler running around was causing us to panic. We know panicking us was not Dr Moore’s intention by any means.

How are we to make life as routine for Madeline if we are also caring for a baby in the NICU for days or weeks?

Can we care for our precious little baby at home?

Is there a baby hospice?

How will this impact Madeline?

So many unknowns caused us to suddenly feel frightened and overwhelmed again.

We realize other families handle this. We are in awe of them. We also realize we have to do what is best for our family and for our daughters. We are planners. The reality which is becoming more clear is we will have many decisions to make the day of our baby girl’s arrival. Bottom line: no one really knows what our daughter’s life will be like until she arrives. This thought is stressful and overwhelming.

After sharing the news of the heart defects, it became obvious the doctors have seen everything they need to see related to our daughter’s heart – the final piece of this puzzle known as Trisomy 18. Dr Moore then asked how many more ultrasounds we wanted to have. As of right now we are alternating between OB appointments and ultrasounds. So every other week we have an appointment. These appointments are draining. They are upsetting. Yes, it is wonderful to see our precious little girl. But from this point forward these ultrasounds only serve the purpose of seeing her. When we were pregnant with Madeline, we didn’t have ultrasounds this frequently. There is something to be said for having a “normal” experience for a while with this pregnancy. Dr Moore asked us: Do you want to continue to have an ultrasound every other appointment or wait 8 weeks until the next one?

Karen chimed in. She mentioned how the medical world tends to get caught up in studying the problems. However, we are now at a point where the doctors and staff have the information they need regarding our sweet girl. Karen passionately shared with us how she wants us to “enjoy this pregnancy.” She is afraid sometimes the medical community sucks the joy out of pregnancies likes ours. She wants us to treasure this time with our baby.

Again, her words “enjoy this pregnancy” confused me. And actually, I was kind of ticked about it. I realize Karen deals with situations like our’s much more frequently than we do. But does she really know what it is like to bond with a precious baby growing inside of you knowing your precious little one might not survive child birth? Again, as Karen said this, I couldn’t help but think: How? How am I to enjoy this? This is the hardest thing I’ve ever done and the hardest part is yet to come.

Wayne and I listened to Dr Moore and Karen’s input. We agreed we needed a break from ultrasounds. We needed to feel like this was a “normal” pregnancy. Last week we had a taste of normalcy since we were appointment free. It was healthy and good for us. We craved this feeling. Everyone in the room agreed. Finally, permission to take a break.

Before parting ways, Dr Moore brought up one more thing we did not expect:

She thanked us.

Dr Moore knew we made it very clear from the first day of this unbelievable journey before we even knew exactly what we were dealing with, we were going to see this pregnancy through until our daughter decided to enter this world.

Dr Moore thanked us for being clear about our wishes. She said it even made her job easier.

I was taken aback by this. From the day we found out we were pregnant we have anticipated the arrival of our precious little baby. We now know the life we planned with our baby is not God’s plan for our precious little girl.

So what is the plan? Wayne and I are determined to find out. And we will allow God to do His work even though we do not understand it one bit.

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This past weekend we wanted to go out to eat. A good friend joined us. Throughout this pregnancy, I crave steak and pizza – pizza with lots of meats on it. Despite these cravings, I can’t stomach the sight of raw meat. Cooked meat is a totally different story.

We were trying to come up with a place to eat other than our typical fall back restaurant locations. One of us suggested Texas Roadhouse and the other one agreed. This is not a typical place for us to frequent. We haven’t been to Texas Roadhouse in over 3 years.  It was really strange it was even on the table- no pun intended.

We put our name in- Turley party of 3 with a highchair. Then we waited. When our name was finally called, the hostess announced, “Turley party of 6 with a highchair.” Six? I’m not sure where she got six from three. I was starving by this time, and yet I felt bad taking up such a large table with only three of us. I let the hostess know we had less than six in our party. She didn’t seem concerned and sat us at the large booth anyway. My stomach appreciated it.

When we sat down, I noticed the people at the booth next to us- two moms and 4 kids with the oldest being a teenager. That was the extent of my observation. We sat down, got Madeline settled and ordered.

While we were waiting for our food, the teenager turned around to see Madeline. Madeline, in her typical fashion, just stared at the teen. The girl tried to interact with Madeline, but it takes a while for Madeline to warm up to just about anyone. While the girl was talking with Madeline, I noticed she had mental disabilities and she clearly loved babies.

At some point during our meal, the teenage girl got up to use the restroom. She stopped at our table to try to get Madeline to interact with her. Of course, Madeline continued to just stare. The girl’s mom hurried her daughter along to the restroom and apologized for her bothering us. I told the mother she was not bothering us at all and apologized for Madeline’s lack of enthusiasm.

When I looked back at Wayne his eyes were wide and he had a shocked expression on his face. He looked like he’d seen a ghost. He asked, “Did you see the girl’s shirt?” I hadn’t noticed her shirt. Wayne thought he read something about chromosome 18 on the teenager’s shirt.

Now we were curious. Did her shirt really say something about chromosome 18? Wayne peered over the booth at the girl’s mother whose back was to us. She too had a shirt on with “18” written inside of a red heart. We couldn’t believe it. This girl couldn’t possibly have trisomy 18, right?

We had to know.

Wayne introduced himself to the mother and asked about the woman’s shirt. Turns out she is a regional director for a chromosome 18 support group. She is from Indianapolis and her friend is from Kansas City. Their families became friends through the support group. They met in St Louis this weekend… and decided to eat at Texas Roadhouse.

What are the chances of this encounter? Ok, God, we are listening.

Wayne explained our daughter’s recent diagnosis. This woman was far too familiar with chromosome 18 complications. Her daughter does not have trisomy 18, but rather another chromosome 18 complication. However, there are plenty of families utilizing their services who have experience with trisomy 18. She provided us with her contact information and wished us luck throughout our journey.

The three of us sat at the table shocked. We all had tears in our eyes. As we recalled the events of the evening— picking Texas Roadhouse, the confusion with party of 3 vs party of 6, these two out of town moms deciding to meet in St Louis and to deciding to eat at Texas Roadhouse— we realized it was meant to be. We were supposed to meet these women. We were supposed to see how they were supporting each other. We were supposed to see that these women had children after a chromosome 18 diagnosis. We were supposed to be reminded of the support out there for families in our situation. We were supposed to be reminded we are not alone regardless of how lonely this feels right now.

I know I crave meat, but in hindsight, I think I was craving acknowledgment that we are not alone in this journey. I was reminded God is always with us – even while dining on a filet at Texas Roadhouse.

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We received another call from the Genetic Counselor to give us the final results from the amniocentesis. Wayne was at work. Madeline was having a toddler moment. I couldn’t take hearing our baby’s diagnosis again. I didn’t have the energy to rehash all of the sadness yet again. I’m just so tired – emotionally exhaustion.

Before the counselor started in on explaining all of the specific details, I asked, “Is there any new information we need to know?”

She answered, “Well, yes.”

My heart sank. What else could possibly be wrong? I know our baby is very sick. I know we are having another baby girl. I know her life expectancy is most likely hours or days. I know the life we had planned with our two beautiful daughters isn’t meant to be the way we wanted it. I simply can’t take any more upsetting information.

I think I stopped breathing.

The counselor continued, “As you know, there is a small possibility that you or your husband passed this extra chromosome to your daughter. Your test results confirm neither you nor your husband passed this to your daughter. Your daughter’s diagnosis is a terribly unfortunate fluke of nature. Furthermore, future children have no additional risk of the same diagnosis.”

Yep, I cried… tears of joy.

Even though this news does not change our current situation, a huge burden was lifted. Knowing neither Wayne nor I caused this sadness nor will we expose future children to the same horrific diagnosis was something to celebrate. In three plus weeks, this was the first good news we have received.

Finally, a silver lining.

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How much time are we going to get with our sweet little girl?

We have no idea. Our doctor has no idea. It could be a few minutes, hours, days, maybe weeks. Then there’s the option I can hardly think about- she might not even be live born. I am going to carry a baby for possibly 9 months, deliver her, and yet I don’t even know if I will be able to spend much time with her. This is so unfair. I am angry. I am sad. I’m in shock. How can this be?

As cradle Catholics, Wayne and I believe our sweet little girl will go to heaven when she passes. We have too many family members in heaven currently- Wayne’s mom, all 4 of his grandparents, 2 of his uncles, his cousin, all 4 of my grandparents, 3 of my uncles, and a cousin of mine.

In all of my sadness, I became extremely concerned with insuring our baby gets to heaven where she can be cared for by Jesus and all of our loved ones already there. My mind became almost obsessed with this idea. How do I know she is OK and well cared for after she passes? What if there isn’t time to baptize her? Will this affect my baby getting into heaven? I have to know she is safe and happy and being loved.

My mind knows when she passes she won’t have the needs in heaven she would have had on earth- diaper changes, feedings, nose wiped, hugs, kisses, snuggles, tears wiped away, and the list goes on and on. But try telling my heart this. All of these needs are supposed to be taken care of by Wayne and me. And all of these responsibilities are being taken from us. We won’t be able to do all of these things for her or if we do, it won’t be for very long. It is this thought that crushes me. It is this thought that makes me burst into tears. Being a mom is my most favorite job I’ve ever had. I won’t have long enough with this precious baby to carry out my end of the bargain.

I could not find any peace when it came to all of these questions and concerns about baptism and care for our baby in heaven. I wasn’t sleeping and I wasn’t too terribly interested in eating. So I reached out to a dear priest friend of mine, Fr Mike, with all of my concerns. I warned him I wasn’t being logical. I was being extremely emotional. I shared with him my need to find peace with this as I know this will be our reality at some point. Fr Mike had a huge task in front of him.

Fr Mike shared with me that if there isn’t time for a priest or hospital chaplain to baptize our baby we could do it. He told me to pour water over her head and say, “I baptize you in the name of the Father, and the Son, and the Holy Spirit. Amen.” Then he shared a belief in Catholicism I had never heard about before- baptism by desire. If our precious baby is stillborn and we do not have an opportunity to baptize her, the mere fact that our desire is to baptize her, she is considered baptized. Baptism by desire- so either way, our baby will be considered baptized. I was starting to find some peace.

But Fr Mike did not stop there. He continued to comfort us. He so eloquently wrote:

“Before she became your daughter she was first and remains always God’s daughter. Rest assured she will be okay for our true life and destiny ahead. Her journey in getting there, for reasons only her Father can know, will be much shorter in length of time than either of ours; but, it is her journey and her pathway in getting there. You have been chosen to carry her to the doorway of our eternal Home. She will go before you. You will bid her farewell. You will say goodbye. But remember that doorway. One day by the will and mercy of God you will walk through that door and she will be there to say hello and welcome you home. Remember she is God’s daughter. He knows her and will welcome her.”

You have been chosen to carry her to the doorway of our eternal Home.

You have been chosen.

This is our job, our responsibility. This is by far the hardest thing I have ever been asked to do, and for whatever reason our God has chosen us to do this. He has chosen us. And as sad and as in pain as we are, God has given this precious baby to us to care for and love even though this is not the way we want it all to play out.

We have been chosen.

And we will see her again. She will be there to greet us when we arrive in Heaven someday. I hadn’t even thought of this. We will meet again. We will be reunited.

Fr Mike’s words have been so comforting to us.  It doesn’t take the pain away, but we do take comfort in knowing we are implementing God’s plan and that He will be with us throughout the entire journey no matter how hard it becomes.

I slept pretty well that night…finally.

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Several months ago, a dear friend of mine asked me to be her daughter’s Godmother. I am so touched and honored to be this sweet baby’s Godmother. It really is a privilege. Plus, I love baptisms- nothing but joy centered around a sweet little baby.

The baptism was only a few weeks after everything unfolded with our baby. A week or so before the baptism, my sweet friend called me. She gave me permission to not attend the baptism if it was too painful or I wasn’t up for it.

I hadn’t thought about the possibility the baptism might be difficult. Our situation is very fresh. It is very difficult to talk about. And yet, I really enjoy distractions. Sitting at home isn’t doing me much good either. I was very touched by my friend’s kind gesture. She was so understanding. I reassured her I am looking forward to her daughter’s baptism and that was no lie.

The baptism was wonderful. All three of us attended. Madeline had a great time with the other little kids. Wayne and I enjoyed having something to do – to celebrate.

I have known my friend, her husband and both of their families since I was little. I was pretty sure most of the people attending the baptism knew our situation, but no one said a word to me. It was really nice. The focus was on my Goddaughter-right where it should be. We received numerous long, tight hugs. That was the way people “told” us they love us and they were praying for us. It was exactly what we needed. It was much appreciated.

People are good. From the moment we learned our journey was going to be difficult and long, people have done nothing but love us and support us. People are good. We have received numerous cards, emails, phone calls and texts. I know it was difficult for people to reach out. I mean, what do you say to parents who are preparing to lose their baby? Most people say “There are no words.” We feel this is the perfect response. There aren’t any words. But hearing from people, knowing we aren’t alone, knowing that people are thinking about us and praying for us, that is what keeps us going.

My favorite text I received was from another dear friend. All she said was, “I was putting the dishes away and I thought of you.” It was perfect. She was thinking of us just out of the blue. Knowing we were on people’s minds even during mundane household chores was comforting. I really appreciated she took the time to let me know she was thinking of me. People are good.

One thing I have learned from all of this is how important it is to reach out to people who are suffering. Even if we don’t have the right words or if it makes us uncomfortable, people need to know they are not alone while suffering. They need to know people are thinking about them. They need to know people are praying for them.

I have a feeling this is one of many life lessons we will learn throughout our journey.

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The Rams had a 15 year Super Bowl XXXIV reunion this evening. Since dad’s birthday was a few days before, I got tickets to the event as a birthday gift. The reunion also brought back a flood of memories for me some of which are due to my unique history and connection with the organization which began 15 years ago.

My neighbors growing up, and whom I have been good friends with throughout my life, were St. Louis Rams cheerleaders in 1999. During that season, my mom passed away at the age of 54 when I was still in college. To help my dad and me with the grieving process, our neighbors gave us access to Super Bowl XXXIV tickets. Their act of generosity was immeasurable. The game and experience is something my dad and I will always remember, but it also created many memories which will resonate with my dad and me forever. When I graduated in May of 2000, I bought season tickets and we have been season ticket holders ever since.

When we bought season tickets, tailgates became a staple for my dad and me. In the early 2000’s, tailgates consisted of friends whom were already, or became, season ticket holders. Year by year we improved our tailgating skills with the highlight being when we decided to begin cooking the signature food of the St. Louis Rams opponent as a part of each tailgate. Later, our tailgate and St. Louis Rams traditions grew and changed when my girlfriend began attending tailgates. After Lauren and I got married, she continued to come to tailgates and later, after our daughter Madeline joined our family, we brought her to several tailgates.

My neighbor’s simple act of kindness in 1999 led to it all. Initially through healing for my dad and me, then as fans, then as a reason for everyone to gather and have fun.

Near the beginning of the reunion, Coach Vermeil spoke and I suddenly found myself experiencing a wave of internal emotions. While the 1999 team has brought many fond memories, they’re also linked to a time of sadness in my life from my moms passing. As many coaches and players of the 1999 team were onstage sharing stories, I felt a new connection to the 1999 team through the sadness we were going through with our sweet baby girl’s Trisomy 18 diagnosis.

When dad and I left the event, we found ourselves reliving certain things from our past and reflecting on the current situation. I shared with dad my realization of the parallels and he became very quiet. It was a shocking revelation for him I’mm sure.

Many people who know me say I’m a huge St. Louis Rams fan. I certainly enjoy the St. Louis Rams, enjoy watching the games, enjoy tailgating, and enjoy football. However, I look at the St. Louis Rams differently. The organization has a deep connection in my life. They’ve played a role in healing, happiness, excitement, and togetherness. As such, their impact in my life goes well beyond the field and game. If that makes me a huge fan, so be it. I just appreciate the connection.

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Since learning of the Trisomy diagnosis, many friends within St. Louis and outside of St. Louis reached out offering to help. “Anything you need,” was a common statement and was very appreciated. Two of my best friends were very persistent. “We need to go out,” they’d say. I’d say I was too busy which really meant I wanted to stay with Lauren, but I suspect to them it meant I was trying to isolate myself.

Friday afternoon I got a text from one of them. Busy after work? I called Lauren and asked if we had anything to do. She said no so we met out.

As I said, this is one of my best friends. We have the same view on many things. We met in college, are about the same age, had the same major, worked together for a while, both lost a parent too young, were in one another’s weddings, etc. The phrase “brother from a different mother” applies.

We started talking about all the usual stuff. Work, the Cardinals postseason, the Rams were off to another frustrating start, our kids, etc. Then the conversation switched to what I’d been going through. He asked how I was handling it. The reality was I was still trying to accept everything, but I also knew there were multiple decisions which we’d need to make in the near future. Things like:

• Do we name her? What’s the point in taking the time and energy to name her?
• If she’s stillborn, do we take pictures of her or with her? It seems really strange to take pictures of a baby that’s deceased. But if we don’t take pictures of her, there’s no real memory of her. Is that a bad thing? Do I want to remember this time in my life?
• If Lauren’s health becomes at-risk as a part of this, then what? The word “terminate” wasn’t an option for us due to our beliefs, but could Lauren face challenges due to this? Is there any risk I could lose her as part of this?
• What does a funeral look like? If Lauren goes full-term, do we bury the baby? Cremate her?
• What do we tell Madeline?

We talked about and analyzed the above questions for hours. Sometimes we’d talk about the loss of our mom/dad to see if the answers to any of the above questions were in our past experiences. Eventually after we’d talked through everything it was time to go.

I told him I appreciated the talk and him and everything he did. We hugged and went our separate ways. Although many of the topics we discussed were depressing topics, it was nice to talk about them.

Steve Jobs once said, “You can’t connect the dots looking forward; you can only connect them looking backwards.” If there was ever a time in which I desperately wanted to prove that quote wrong, it was now. However, the quote is spot on. Despite my desire to look forward, it wasn’t realistic. Over the coming days, weeks, and months, Lauren and I would need to put together a plan so we could one day look backwards and connect the dots.

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Today was our first OB appointment with Laura. We switched our care to Laura since she is a high risk doctor and has been with us from day one of this nightmare. It was the third week in a row of doctor’s appointments. We were not excited to have yet another emotionally draining appointment.

This was the first time we saw Laura and Karen since the initial diagnosis. The four of us sat in the room together. It didn’t take long for my waterworks to start. Wayne had to do most of the talking because I couldn’t speak over the tears. He’s a trooper.

Our big question was: Now what? Now that we know what we are dealing with, what do we do? That was the focus of the appointment.

Since we’ve had a diagnosis, I have refused to do any googling on Trisomy 18. I have no desire to hear other people’s stories or read about Trisomy 18. That might sound strange, but I knew our story and that’s all I wanted to focus on. I didn’t want false hope nor did I want to be completely freaked out. So I refused to google. Wayne did very little googling at first. In fact after doing a very small amount of research, Wayne told me to never do it. I’m glad my gut said the same thing.

In Wayne’s limited research, he found two schools of thought when it comes to Trisomy 18. Some people are focused on making the baby comfortable after birth in order to spend time with the baby knowing the baby will pass in a few minutes, hours, or days. But there is also an extreme school of thought strongly encouraging parents to take extraordinary measures when the baby is born. Wayne stopped researching after reading this. We weren’t interested in making our baby’s diagnosis a political debate.

Laura’s first question to us after we all hugged (see why we love her?) was: What do you know about Trisomy 18 from the internet? We shared with her the very little we know. And we went on to explain our interpretation of it. Out of the 10 common complications Trisomy 18 babies have, our sweet baby girl has 7 of them. We believed our baby’s numerous complications made her diagnosis on the more severe end of Trisomy 18 spectrum- not to suggest any Trisomy 18 diagnoses aren’t severe. Therefore, our guts told us we wanted to spend time with our little girl and not rush her off to surgery where her little body will most likely not survive. Laura and Karen completely agreed with our thought process.

Of course, this assumed our little girl will be live born. Laura reminded us, in a very gentle way, preterm labor, stillborn, or intra-uterine death were still a strong possibility. Regardless, I was delivering a baby. We now needed to pray for a live birth so we could spend time with her and so Madeline and she could meet.

I couldn’t believe we were having this conversation right now. More tears.

We also discussed how to handle the remainder of this pregnancy. As of now, there were no risks to me. I needed to be monitored for the usual pregnancy risks- diabetes and preeclampsia. We would check in on our baby periodically to listen to her heart tones, but the main focus would be on my health.

Ugh, this just seems so unnatural- putting my health over our baby’s in a way.

We decided to keep the same OB appointment schedule. And we added ultrasound appointments as well. Basically, we scheduled an appointment every other week. This is going to be a very long pregnancy for many, many reasons.

Our next appointment is in two weeks. It will be another growth ultrasound. It has been difficult to get good images of our baby’s heart. The doctors know there are heart defects, but they still do not know how severe. They are hoping the next ultrasound will provide more information.

Before we left, Karen said something interesting. She mentioned how important it is that we enjoy this pregnancy.

WHAT? I do not understand. How am I to enjoy this pregnancy when I know at any time my baby could die and even when she is born she will not live long? I know Karen deals with situations like ours on a regular basis. My mind knows Karen knows what she is talking about, but my heart doesn’t understand. Enjoy this pregnancy? How is that even possible?

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