Author: Lauren

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”

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.

[twitter_follow username=”CatherineCares” language=”en”]

[fblike style=”standard” showfaces=”false” width=”450″ verb=”like” font=”arial”]

[fbshare type=”button” width=”100″]

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.

[twitter_follow username=”CatherineCares” language=”en”]

[fblike style=”standard” showfaces=”false” width=”450″ verb=”like” font=”arial”]

[fbshare type=”button” width=”100″]

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.

[twitter_follow username=”CatherineCares” language=”en”]

[fblike style=”standard” showfaces=”false” width=”450″ verb=”like” font=”arial”]

[fbshare type=”button” width=”100″]

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.

[twitter_follow username=”CatherineCares” language=”en”]

[fblike style=”standard” showfaces=”false” width=”450″ verb=”like” font=”arial”]

[fbshare type=”button” width=”100″]

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.

[twitter_follow username=”CatherineCares” language=”en”]

[fblike style=”standard” showfaces=”false” width=”450″ verb=”like” font=”arial”]

[fbshare type=”button” width=”100″]

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?

[twitter_follow username=”CatherineCares” language=”en”]

[fblike style=”standard” showfaces=”false” width=”450″ verb=”like” font=”arial”]

[fbshare type=”button” width=”100″]

As much as we wanted answers, it is so painful to hear Trisomy 18 is our fate. My heart hurts even more now. The pain is agonizing. I am just sad. It feels like we’ve been punched in the gut all over again. Why is this happening? I do believe everything happens for a reason, but come on! Why are we forced to feel this much pain? Will we ever know why?

We have so many more questions now. There are so many unknowns it feels like our life is just on hold. We have no idea how long our daughter will live. Will she pass while I am pregnant? Will she be stillborn? Will she live a few minutes, hours, or days? Will Madeline and she get to meet? Can we take pictures? Is that weird? We need a name for her- a meaningful name. I want to record her heartbeat, that strong little heartbeat. I want to get her handprint on a Christmas ornament just like we did for Madeline’s first Christmas. I want to read her a story. “God Gave Us You” is the perfect story… if I can get through it. She needs to be baptized. What if there isn’t time? My mind has been racing with questions. There are so many unknowns.

We attended a lovely wedding the Saturday after we learned the diagnosis. I guess we could have stayed home after our 2 weeks of hell. But Wayne and I take comfort in having plans from time to time. It’s a distraction. Sometimes we are just cried out.

I attended the ceremony while Wayne stayed home with Madeline. I sat in the back. I cried through most of the ceremony especially during the songs. One of the songs we played at our wedding as well- “We Are One Body”. One Body. This song has a whole new meaning to me now. One Body. All pregnant women are literally connected with their babies. Your two bodies literally are one. Right now, Catherine’s little heart tones are strong even though there are things severely wrong with her heart. I am keeping her alive. We are One Body. This is a song I love to sing along too. I couldn’t today. All I could do this time is cry. I’m not sure I’ll ever be able to hear it without crying again.

Wayne and I went to the reception later that evening. It was a lovely reception. We only knew a few people and we sat at a table with other people who didn’t know many people attending the reception either. Sometimes these tables are the best. This wedding was no exception. We sat at an especially fun table with wonderful people. It was nice they didn’t know us. They had no idea what we were going through. They couldn’t feel sorry for us or ask us questions. They were just a fun loving group of people.

We were getting to know each other. The regular small talk was taking place. What do you do? How about those Cardinals (it was October in St Louis so of course the St Louis Cardinals were in the playoffs)? Do you have children? How many kids do you have?

Wait, what was that question? How many kids do you have?

This exact question was asked by one of the couples sitting to our left. Wayne and I looked at each other panic stricken. We didn’t think about this question. How many kids do you have? What do we say? One? A 19 month old and I’m 5 months pregnant? But that leads to “Oh, congratulations! When are you due? Is it a boy or a girl? How excited is your daughter? How are you feeling?” and the list of inevitable questions continued. Of course these questions are innocent. Of course, they are just happy for us. Of course they have no idea we are grieving. The last thing we want to do is make them feel sorry for us or uncomfortable. We will probably never see them again. Why would we bring the happy table vibe down?

Yet another thing we didn’t think about. How many more of these situations are we going to have to prepare for and/or stumble through when we happen upon them unknowingly?

What are we going to say when people ask us how many kids we have?

[twitter_follow username=”CatherineCares” language=”en”]

[fblike style=”standard” showfaces=”false” width=”450″ verb=”like” font=”arial”]

[fbshare type=”button” width=”100″]

Around noon today our front door opened. Wayne walked in from work and he looked terrible. He has been stuffy for a few days but he must have gone downhill during the morning. I’m sure the string of sleepless nights didn’t help his immune system either. He looked exhausted and miserable. He went straight to bed. The last thing we needed was for him to be sick. I needed him to take care of himself so he can walk with me through this misery.

Madeline and Wayne were asleep while I was in the living room. It was around 3:30pm or 4pm. I don’t remember what I was doing when my phone rang. I recognized the number. It was someone from the hospital calling. I felt sick. I knew this was the preliminary results phone call. I answered the phone. It was the genetic counselor with the results. She seemed perky, but I wasn’t willing to believe she had good news. I asked her to hold on a moment so I could wake up Wayne. Wayne jumped up as soon as I said, “The genetic counselor is on the phone.” He took the phone because I started to tear up at the thought of our baby’s fate being shared with us in the next few seconds. Wayne is our spokesperson because once I start crying, I can’t speak a coherent sentence. God Bless him for being so strong.

It felt like she was taking forever to get to the diagnosis… or no diagnosis. I began to shake. Finally she said it.

We have confirmed your baby has a trisomy 18 diagnosis. Your baby has an extra chromosome 18.

All I could do was cry.

Wayne asked what the sex of our baby is. A little girl. Madeline has a sister. A sister she will not get to grow old with. I have two sisters. I did not care if we were having a boy or a girl. But since I have experience with sisters, I was crushed to know my little girls aren’t going to be able to borrow clothes from each other, giggle together, and become best friends. I have cried a great deal over the last two weeks, but knowing that Madeline has a sister, a sister who has so many complications, made me inconsolable.

The counselor could hear my sobs. She asked if we had any questions. We didn’t. We knew what this diagnosis meant given the number of significant complications our baby had. We were crushed. We just needed time to be sad before we could really process what this meant for us. The counselor offered her condolences and we hung up.

We hugged and cried. Our worst nightmare had come true. Why was this happening to us?

Eventually, Wayne started making the calls to family and a few friends. He asked these folks to spread the word. We were just too emotionally exhausted to make another round of sad phone calls.

Madeline woke up from her nap. Oh, how I held her tight. Some day we will have to tell her about her little sister. What a great BIG sister Madeline will make… even if it is a long distance relationship.

[twitter_follow username=”CatherineCares” language=”en”]

[fblike style=”standard” showfaces=”false” width=”450″ verb=”like” font=”arial”]

[fbshare type=”button” width=”100″]

The last 24 hours since the amniocentesis have been interesting. Not being able to lift anything over 10 pounds including miss Madeline hasn’t been easy. This one requirement basically prevented me from doing much of anything. On one hand it was nice-no laundry for me today! On the other hand, all I could do was sit and worry. I prayed a lot too. Prayed for a miracle. After what we heard during our appointment- the doctors will be “shocked” if the diagnosis is NOT Trisomy 18- I am having an internal struggle. This struggle is faith vs science. I don’t want to lose hope, but all signs were pointing to a trisomy diagnosis. The wait was torture.

Wayne was able to work from home yesterday to help me with any lifting, especially when it came to Madeline. I never really paid attention to how often I lift that little girl until I wasn’t able to do so. I pick her up to put her into the highchair, to change her diaper on the changing table, to put her into her crib, and just to snuggle. Why aren’t my arms totally ripped?

The following day Wayne went into work. He really needed to take care of a few things since he had been out of the office more than usual. In some ways, work has been a nice distraction for him.

I am trying to continue to take it easy. Not sure how successful I am being because this morning, while Madeline and I were playing on our bed (she loves to fall into the pillows), I had two contractions. There was some intensity to them. The first one totally took me by surprise.

Am I having a contraction? It’s kind of uncomfortable. How long did that last? Should I call someone? I’m not going into labor, am I?

As quickly as the contraction started, it ended. I was a little nervous about contracting, but not panicking…yet. What I think was a half hour later, I had a second contraction. Again, it was uncomfortable, but manageable. Now I was starting to panic. Of course I didn’t want to frighten Madeline, but I was really nervous about going into labor. I remembered Wayne and I used a contraction counter app while I was laboring with Madeline. The nurses would come in and ask how far apart my contractions were and we had no idea. So the app came in handy. But that app is on Wayne’s iPad which was with him at work. I have an iPhone now, so I quickly downloaded an app and I started keeping track. I also promised myself if I had a third contraction, I would call Karen, our caseworker as I’m supposed to call her with any questions or concerns. A third contraction was definitely a concern.

After all that I never had another contraction. Man, I have got to get a grip. The last thing this baby, Madeline, or Wayne needs is a stressed out, dooms day mommy & wife.

[twitter_follow username=”CatherineCares” language=”en”]

[fblike style=”standard” showfaces=”false” width=”450″ verb=”like” font=”arial”]

[fbshare type=”button” width=”100″]