Mothering Caroline Grace

learning how to be the mom of an angel

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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.



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Memory Monday

I didn’t know real exhaustion until after Caroline’s birth.  I went into labor overnight, so my husband and I got no sleep the night before Caroline was born.  Because of this, we started our marathon at a disadvantage, as many parents do.  In the hospital, nurses often came in to check on me as well as Caroline, and it felt like a time warp.  If the nurses didn’t write down the time of Caroline’s next feeding, there was no way I could remember.  Time is an enigma in the hospital.  My husband was so exhausted that I watched Caroline for the majority of the next night so that he could get some sleep.  I was still running on the adrenaline of Caroline’s birth and the wonder at how well she was doing.  The next day, grandparents helped me to get a little sleep, but there was so much planning to be done!  We were taking our little girl home!  We didn’t even have a car seat.  We couldn’t stand the thought of having a car seat installed in our car and driving it home empty, so we figured if we needed one, we would go out and get one.  Kindly, the hospital was able to give us one.  We continued making plans for hospice care, all the while taking care of our beautiful Caroline.

When we got home, time was less of a warp.  We started to get into a routine, but Caroline liked to be awake and fussy around 2-4 am.  My husband and I worked together to learn how to calm her.  I learned that he has infinite patience when he’s exhausted, and I do not.  At one point when I had gone several days on little sleep, I was looking for a pen to label my breastmilk.  I couldn’t find one, and I crumpled into a pile and broke down into tears.  At that point I knew I really needed some sleep – a simple problem felt like the world crashing down.  My husband, on the other hand, never got frustrated the way I did.  He always asked if I needed help, even when I was snapping at him.  I really don’t think I could have done it without him.

One night, I was so exhausted and Caroline would not stop crying.  This was a serious problem, because when she cried, she wasn’t breathing, and when your heart is in bad shape, not breathing is not good.  I was walking around with her and bouncing her, because looking around at different rooms and feeling the motion often soothed her.  As I walked around with her, I was telling her, “You are driving your mommy crazy, do you know that?  Yup, driving mommy crazy.  Calm down baby girl!”  Eventually she did, and I kissed her goodnight as we both tried to get some sleep.

I felt bad later for telling her that she was driving me crazy.  Who says that to their baby?  However, I think it was a moment that we needed to have.  I would never get to tell her as a teenager, so in my exhaustion it came out.  Strangely, it is one of our mother-daughter moments that I most treasure.

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Anxiety and Pebbles

The past few days I have been busier than usual.  I’ve felt pulled in many different directions and I’ve felt an emotion that is new to my grief journey: anxiety.

I’ve searched my emotions for the root of my anxiety today, but it escapes me.  Perhaps it is an inability to multitask the way that I used to because Caroline is always at the forefront of my mind.  Perhaps it is because I have not been sleeping well, since I leave the lights of Caroline’s miniature Christmas tree on all night and it wakes me up, but I need them on.  Only parents who have lost a child will understand that one.  Perhaps I am just anxious about the holidays.  As they creep nearer and nearer I miss Caroline harder and harder.

This month has been the month of memorial services.  We have been invited to a memorial service almost every weekend leading up to Christmas.  The services have been good, but emotional.  It is nice that they choose this time of year for the services, but at the same time, I would love for them to be spread out throughout the toughest year of our lives.

Last weekend was the memorial service organized by Caroline’s hospice team.  During the ceremony, they read names of those who had passed on, of which Caroline was likely the only baby, and as our loved one’s name was read, we were invited to come up to the front and take a pebble from a glass vase.


They shared that they hold a memorial service every month during their staff meetings, and each time a patient passes, they place a pebble in the vase to remember them.  I thought it was a beautiful thing for them to do, and commend people who can work so intimately with death.  There were so, so many names.  When Caroline’s name was called, my husband and I went up and each took a pebble.

That pebble has helped me through my anxiety this week.  Holding it in my hand somehow relieves some of the stress.  It is a symbol of the many lives that Caroline has touched.  It is a symbol of the people who continue to care about our family.  It is a symbol of love.

Loving you always, my little peanut.

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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.