Mothering Caroline Grace

learning how to be the mom of an angel


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Remembering Her Sweet Soul

Caroline had a sweet demeanor.  She was such a content baby, never fussing as she was passed from person to person.  She loved to be cuddled and warm.  She loved snuggling with mommy and daddy.

As she grew, she became more alert and we got to know her beautiful blue-gray eyes.  She explored the world around her with those eyes, and loved taking in the sights when we moved from room to room.  We took pictures at home that captured Caroline’s alert moments in a way that no one else could.  However, our amateur photos had lighting and color issues that could use a professional’s touch.

We decided to have a photographer professionally edit our favorite photos taken at home.  She went beyond our expectations by removing Caroline’s feeding tube from some of her pictures.  Caroline hated that feeding tube.  The edited pictures now capture Caroline’s free spirit in a way that you could not see with that plastic tube taped to her cheek or her chin.

 
I am very protective of my pictures of Caroline.  Second to my memories, they are the firmest link to my time with the sweetest baby in the world.  I find myself looking at this picture often every day, still amazed at the beautiful miracle I was blessed to meet.  Through this photograph I can feel the love in her eyes and remember how it felt to stroke her hair and kiss her forehead.

Every day apart is impossibly hard, but I am so honored to be Caroline’s mom and wouldn’t trade it for anything.  Her sweet soul inspires me every moment of every day.


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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.


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Memory Monday

Caroline had the sweetest personality.  She complained very little, even when her body was failing her.  She was happy to be passed from person to person, making it easy for everyone to hold her who had any desire.  When someone came to visit, holding her was usually a strong desire.  I am happy that everyone who wanted to hold Caroline got the chance to bond with our special, beautiful baby girl.

One thing that Caroline did not like was having her clothing adjusted.  Diaper changes were not her favorite – she did not like being exposed as some babies do.  Most of all, she hated the touch of a cold stethoscope.  Her nurses always did their best to warm up the stethoscope before taking a listen, but she still complained about having her clothes disturbed.  My husband and I got very good at listening through her clothes for the “puff” in her stomach to check that her feeding tube was in position.  She was much happier when we were able to keep her clothes on while feeding her.

Caroline loved cuddles.  We spent many hours together in a rocking chair or on the couch with her on her side pressed against my chest.  She loved looking around at new surroundings.  She loved the feel of warm sunshine.  She loved music.  She loved showing off her many girly outfits.

I love and miss everything about my sweet, precious daughter.  See you soon, Caroline.  Mommy loves you.


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Working Mom

“The pictures of your baby are beautiful,” said someone walking through my office.

“Thanks,” I replied, with a fear of what was coming next.

“I don’t know how you can come in with that beautiful baby at home,” she said.

I smiled, not wanting to share my life’s story with this total stranger.

I wish I still could.

I keep pictures of me, my husband, and Caroline on my computer desktop at work.

Seeing those pictures every day is worth every awkward interaction in the world.

Love, love, and more love to you, Miss Caroline.


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Memory Monday

I am so grateful for every picture that we have of our dear daughter.  We had professional pictures taken immediately after Caroline was born and the day before she died.  I am ever grateful for those precious memories frozen in time and the photographers who stood by our side.

I placed something in Caroline’s hospital bag that I didn’t know if I would use.  A week or two before her due date, I had the idea to get a chalkboard and decorate it with her name and pink baby stickers.  The idea was to update the chalkboard with how old she was and to take pictures of her with it.  It would give us a way to look back and know how old she was each day.  We knew of the strong possibility of not getting a chance to take chalkboard pictures, but we hoped and prayed for some time with our little girl.

We were so thrilled to be given time together!  In the hospital, we started by taking pictures of us, Caroline, and her chalkboard every few hours.  Soon, she had survived her first day, and the chalkboard proudly read, “I made it through my first day!”  Every day from then on, we took a chalkboard picture.  “Caroline is 5 days old!”  “Caroline is 1 week old!” “Caroline is 22 days old!”  “Caroline is an 8 week old inspiration!” “Caroline is 58 days old!”  Each day, her chalkboard age declaration ended in an exclamation point, because we were thrilled to be witnessing the miracle before our eyes.  Every day, minute, and second was such a gift.

We always waited to do Caroline’s daily chalkboard picture until we had a visitor or when Caroline was most alert.  In the progression of pictures, she gets more alert the older she gets.  It was amazing to see her grow and interact with her world.  We made a collage of all of the chalkboard pictures, and it shows how loved she was and still is.  Every person who was able to visit was thrilled to be in the chalkboard picture, and the collage reminds me how loved Caroline is by so many people.

Love you forever and ever, Miss Caroline.

 


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Memory Monday

Caroline’s hospice nurses helped us to make memories with Caroline.

They brought plaster to make molds of her hands and feet.  It was quite the production – the two of them were in our kitchen, trying to mix the molding material to the right consistency.  My husband gave them a bowl to use and on the first try it hardened almost immediately.  The second try was slightly more successful.  The cats were very interested in trying to sniff the material while we plunged one of Caroline’s hands and one foot into the mold.  I was nervous about the hand mold, because Caroline’s sixth finger was so delicate, but we gave it a try.  It turned out that the hand mold was the only one that came out well.  We were able to remove her pinky from the mold with no problems!  We then filled the mold with plaster and let it dry.  The extra pinky was not replicated in the plaster, but we still have the mold of the rest of Caroline’s hand.  It is beautiful, but missing a piece.

Since we had so many problems with the plaster molds, the nurses found another keepsake to make.  It was a picture frame where one side is clay to make hand and foot imprints.  We did this one on our own when Caroline was 4 weeks old.  I had the hardest time getting the clay flattened out in the frame and ready for prints!  My husband helped me and finally it was ready.  We brought Caroline into the kitchen and my husband rested her in the cat beds.  She looked so comfortable!  We pressed her hands and feet into the clay and wrote that she was 4 weeks old.  We then baked it to harden the prints.  That frame now proudly sits in our living room.

The final act of great kindness by our hospice nurses was to arrange a photographer to take pictures of us as a family.  She volunteered to take pictures at no cost to us because she had lost children too.  We set a date for the pictures and arranged Caroline’s feedings around it so that we could remove her og tube for the pictures.  We picked out a few outfits – a sailboat-themed outfit was up first.  It was incredibly adorable and my husband found a matching shirt that was blue with white sailboats in contrast to her white with blue sailboats.  I picked out a white shirt to wear for those pictures.  We didn’t know how many more outfit changes we would get out of her, especially since we had to schedule the photo shoot during her typical fussy time.  However, we got to the park and she was incredibly calm for the pictures!  She loved being outside and feeling the sun on her skin.  We ended up getting two more changes out of her, into a ruffled romper that I had bought before she was born for pictures, as well as a flowered onesie.  Since Caroline was so calm, we were able to get some pictures with my parents as well, who were visiting.

Those pictures were taken the day before Caroline died.  We are so grateful for them.  I couldn’t wait to get them once they were ready.  It was hard knowing that they would be the last new pictures of my baby girl, but I am so thankful that we have professional family photos.

Thanks to our hospice nurses, we have beautiful ways to keep Caroline’s memory alive in our hearts.