Mothering Caroline Grace

learning how to be the mom of an angel


4 Comments

My Flowing Pink Shirt

This semester, I am teaching my first college course.  I have been incredibly busy, which has been good and bad.  I think lately I have been pushing down my feelings because I have so much to do.  If I’m having a rough night, I still need to finish prepping my lecture for the next day, so I do.

The first day of class I wore a flowing pink shirt.  It is a knit shirt that flares at the bottom.  I bought it when I was pregnant with Caroline; even though it’s not a maternity shirt, it looks like one.  I wore it when I guest lectured in a class, now over a year ago.  That guest lecture was my first lecture in front of an undergraduate class, and it was about a month before I knew of Caroline’s condition.  I got up in front of all of those people with my little secret – that I was expecting a child.  I was in the blissful stage of my pregnancy that was cut far too short.

Now, I still have a secret, but instead it’s that I carry my daughter in my heart instead of my arms.  It felt right to put on the same pink shirt that first day.  She was with me for my first college lecture, and wearing that shirt helped me to feel that she was with me again.

Every day in front of my students, I feel an urge to share my story.  I then remember that it’d be inappropriate, and don’t.  For now I will continue to wear my memorial necklaces, and keep hoping that someone asks about Caroline.  I have such a need to share my baby with the world.  She is the most incredible person I have ever known.


2 Comments

Memory Monday

I remember our last walk together.  My parents were visiting and we decided to take a stroll around the block with Caroline.  I got her settled in her wrap, all snug next to her mommy, and the four of us went for our walk.

Caroline loved being outside and feeling the sunshine on her face.

As we were walking, I noticed that Caroline was holding her head up by herself.  This was the first time I had seen her do this!  My little girl was growing up right before my eyes.  I remember being so amazed by her, especially since we were told that she would be hypotonic.  I don’t know that Caroline’s muscle tone was normal, but she held up her head by herself.  It may have only been for a few seconds, but it was amazing all the same.

She was always stronger than expected.  That’s my daughter.


12 Comments

The Winding Hallway

It was familiar, but I was surprised how quickly I had forgotten the details.  Large oil paintings in bright colors lined a long, winding hallway.  We had to walk down this hallway to get to our appointment.  The colors seemed a little brighter this time.

Yesterday, my husband and I drove into the city for our final appointment concerning Caroline.  We decided against an amniocentesis during my pregnancy, and instead had diagnostic chromosome testing done at Caroline’s birth.  We got the phone call from my OB’s office a few weeks later to tell us that Caroline did have Trisomy 13.  In the moment, I didn’t ask any questions or need to know more.  Whether or not we were genetically predisposed to Trisomy 13 had no impact on taking care of our precious baby girl.  Now, our priorities have shifted and we decided it was time to review the results and our risk for a future baby to have trisomy.  I finally made the appointment to go back to the city for genetic counseling, to go over Caroline’s results.

I had nerves all morning.  We were going back to the office where a genetic counselor first broke the news to us that our child had Trisomy 18 or 13, and was not likely to survive.  Being back in that office put me on edge, and I sat in the waiting room with my arms crossed, looking very uncomfortable.  I was.

We were finally called back, into the same conference room where our hopes and dreams had been destroyed.  The genetic counselor that we saw was not the same person that we saw when we were pregnant with Caroline.  She started by asking us about our time with Caroline.  It had been a long time since I’d told her story from start to finish to a new person, but it felt so good to do so, even with tears.  She then took the time to look at the book of pictures that I brought with me.  We know that the time that Caroline spent with us was truly a miracle and she was the exception rather than the rule, so it was nice to show this woman that babies with Trisomy 13 can live.  Caroline lived for a short time, but that doesn’t make her any less of a person.  In fact, I think it makes her more of a person.

We then talked about the results.  The cells that were analyzed all showed full Trisomy 13, meaning that it is the type that happens randomly and is not inherited.  This means that our recurrence risk is about 1%.  This looks like a great number, but when you’ve already been in the 1% category, you start to lose faith in statistics.  However, moving forward, we now know that we are not putting future children at an unreasonable risk for trisomy.  We hope to have more children someday.

One thing that meant the world to me was that our genetic counselor treated Caroline as a person.  She used her name throughout the appointment and celebrated her life with us.

On our way out, I gave a copy of Caroline’s picture to the genetic counselor, her student, and the receptionist in the office.  The genetic counselors were thrilled to have a picture of Caroline, and I was happy that their image of Trisomy 13 would go beyond what they saw in textbooks.  They would know that every baby presents with Trisomy 13 in different ways, and remember how our little girl beat every odd to spend time at home with her family.

When I gave a copy to the receptionist, she broke into tears and said that looking at Caroline’s picture will remind her how precious life is and help her through her hard day.  I told her that Caroline is our miracle.  She was so sweet, and I was amazed at the way that Caroline’s picture was able to move people.

Leaving that office for hopefully the last time, I felt a sense of relief as we passed through the winding hallway.  Instead of evoking memories of pain, it has softened to evoke memories of all the people in that office that have loved Caroline.  She continues to inspire everyone who hears her story.  Caroline, you amaze me every single day.  I love, love, love you.


Leave a comment

Memory Monday

I chose a med-free delivery.  I made this decision for two reasons.  First, so that I would be as alert and myself as possible for the likely short time that I’d have with my daughter.  Second, so that her heart wouldn’t have to withstand the drop in blood pressure associated with an epidural.  For a healthy baby, the blood pressure drop is of little concern, but I didn’t know how Caroline’s heart would handle it.  I wanted to give her the best chance that I could.

During my pregnancy, I really had to concentrate on feeling Caroline’s movements when doing kick counts.  I think this was because Caroline was small and my fluid was low.  Her movements were usually subtle.  When I went into labor, I was more focused on getting through contractions than feeling movement, so when my OB asked if she had been moving, I responded, “I don’t know.”  We chose not to monitor Caroline’s heartbeat, so no one knew if she was still with us as my labor progressed.

When I was in the final stages of pushing, I felt one strong kick.

I kept it to myself, not wanting to get everyone’s hopes up, but in that moment I knew she was still with me.

After Caroline was born, the first thing I remember is my husband saying, “She made it!”  There she was, looking right at me and soon releasing her first cry.

The rest of the time after Caroline’s birth became a haze.  I was not groggy from pain medications; instead, I was groggy from being awake all night in labor.

This is when our Now I Lay Me Down To Sleep photographer came in.  She took pictures of Caroline’s baptism.  She took pictures of Caroline with her family.  She took pictures of Caroline being evaluated by the NICU team.  When I didn’t want to give her up, she promised that it would only take her a few minutes to take some pictures of Caroline in the warmer.  It did and they were all beautiful.

Thanks to Now I Lay Me Down To Sleep, my hazy memories of that early morning in March are now so clear.  Thank you for providing the priceless gift of photography to families in need.

Today, the Today Show featured a piece on Now I Lay Me Down To Sleep.  The family that they interviewed was so much like our own, that I shed many tears watching it.  However, I am so thrilled that the Today Show helped to break the silence on infant loss and helped NILMDTS to become more of a household name so that families in need will know to ask for them.

The piece can be viewed here:

http://www.today.com/parents/portraits-fatally-ill-newborns-help-heal-parents-heartbreak-1D80432195?cid=sm_fbn

The NILMDTS website can be viewed here:

https://www.nowilaymedowntosleep.org/


20 Comments

How Pregnancy Announcements Feel as a Bereaved Mother

As the mother of a beautiful, sweet, wanted daughter who left this world too soon, I struggle with hearing that friends and family are pregnant.  Instead of hearing that they are expecting and beginning to glow with happiness, I hear:

“My perfect little life continues to be perfect.  Just wanted to shove that in your face while you grieve.”

“I know that your hopes and dreams for your daughter were shattered, but I wanted to let you know that my hopes and dreams for my child are very much intact!”

“My baby is still alive and yours isn’t.  Just thought I’d let you know.”

Each announcement is a stab in the heart and leads to an hour of crying in bed, holding one of Caroline’s stuffed animals tightly in my arms.  I feel really bad about reacting this way.  I’m really not the jealous type.  I want to be genuinely happy for them, and at times I am, but that initial news is always hard to swallow.  It is another reminder of what I’ve lost.  I spiral into a crying mess, missing my daughter, watching the world continue to turn when I want to hit the pause button, and it prevents me from feeling truly happy.

I am grateful for the texts and the emails that let me process the news on my own.  A phone call or in-person announcement doesn’t give me the opportunity to bury my face in a pillow and cry, which is what I need to do.

I am hopeful that there will come a day when I don’t feel crushed by the pregnancy announcement of a close friend.  I don’t know if it will take a living child of mine for this to change, or if I will always have a hard time learning that another life is coming into this world, a world that my daughter could not stay to enjoy with me.  I hate being fragile like this, but this is how I feel.  And you know what?  I have every right to be fragile right now.

I have wounds that I will tend to for many years to come.  With those wounds comes fragility, but also strength.  I am a survivor of the unimaginable.  I am the mother of a child in heaven, full of love for my beautiful, sweet, wanted daughter who left this world too soon.

 


Leave a comment

Memory Monday

When Caroline came home from the hospital, she was completely stable.  That first week, her hospice nurses came by every day to check Caroline’s vitals, and every day they were stable.  They continued this way, so we cut down our hospice nurse visits to 3 times a week.

I remember the day that Caroline left stability like it was yesterday.

It was May 2nd.  I had planned to leave Caroline with her grandmother that morning for an hour or two to go in to work for a seminar.  I never made it.  I had a tough morning of a fussy baby girl and noticeable changes.

That day, her hands were much colder to the touch than they had been before.  I also noticed that her feet were slightly swollen.  This was the first time that Caroline had shown any change since coming home from the hospital, and it was a change predicted by the cardiologists that we had seen in the past.  Up until this point, a part of me still believed that there was a chance of Caroline’s heart healing itself.  She had done much better than expected so far, why wouldn’t it continue?

When Caroline’s hospice nurse came for her visit that day, I broke down.  I showed her that Caroline’s hands were cold and her feet were swollen.  The nurse reassured me that it was very mild swelling that should not be causing any pain, but I knew that it meant that Caroline’s heart was beginning to fail her.  I told the nurse, “It feels so wrong doing nothing.” She replied, “Listen.  You are not doing nothing.  You are doing everything.  You are pumping milk for her every day.  You are feeding and taking care of her.  I can’t imagine someone taking better care of her.”

What Caroline’s nurse said was true, but there was a deeper yearning meant by my comment.  It felt horrible to be in the position I was in, where there was no cure for my daughter’s condition and I was completely helpless.  There was nothing I could do for her other than keep her comfortable.  I didn’t want her to suffer.  As a parent, it just feels wrong, even when you know you are doing the best you can for your child and your family.  I have no regrets about the decisions that we made for Caroline, but that did not make them easy.

Caroline’s change in status made it all very real, and brought many tears the next few days.  Now that she was showing symptoms of her heart condition, I feared that we would lose her very soon.

Once again, Caroline defied the odds.  She remained happy and stable with us for almost another month.  In fact, the week that she passed away, there were a few days where her swelling had completely disappeared.  The day that she passed away, her vitals were stable during her nurse visit and her lungs remained clear, as they had always been.

I am so thankful for the time that we were given with Caroline, and that she was so comfortable with little use of pain medication.  We were able to see her sweet personality and she was able to spend quality time with her family.

There would be many more tears to follow May 2nd, but those tears were always and will always be tears of love.