Mothering Caroline Grace

learning how to be the mom of an angel


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Turkeys and Shoppers

Today is the biggest shopping day of the year, which means that my husband is hard at work.  I am instead at home, sitting at my computer with the heated throw that my husband got me (I’m always cold) and sipping on some hot tea.  I have homework to do that I’d like to get done before he gets home, but first I will write.

Thanksgiving was a hard day, even though on the surface it was a lovely day.  We slept in, ate a big breakfast, took a nap together, went out for dinner, and then watched football before going to bed early.  It was a bittersweet day that I did enjoy but went to bed sad, wishing I had needed a high chair at dinner and could have dressed Caroline in a turkey outfit.  Instead, we decorated a small Christmas tree for Caroline and put all of her ornaments on it.  There is a void in my heart that cannot be filled by anyone but her.

Thanksgiving is one of my favorite holidays and this is the first time it has been both happy and sad.  That is the reality of being a bereaved parent – you are always a little happy and a little (or a lot) sad.  The two emotions coexist in a way that was never possible before.

I am so thankful for my daughter.  She has taught me so much and led the most meaningful life.  She helped me to believe in miracles again and inspired so many wonderful things.  She made me a mom and for that I am forever grateful.  I love her so much, always and forever.

I am also thankful for my husband, who has been my rock of support through the best and worst year of our lives.  If not for him, I surely would have quit my program and abandoned my life here.  He is my shoulder to cry on and my inspiration to keep moving forward.

Yesterday, me and the husband were talking about long lines for store openings.  I have never been one to go out shopping on Black Friday – I hate crowds and long lines.  However, I thought that there was one person I would have braved the crowds for – Caroline.  Or another child someday.  If there was some toy that my child wanted for Christmas, and the only way I could afford it was to go out on Black Friday, I would do it.  Being a mom drives you to do things you never would otherwise, because you love your children so much and would do anything for them.  If I could have died for Caroline so that she would have the chance to live a long life, I would have in a heartbeat.  However, I was not given that option.  For some reason, God wants me to stay here while my baby is in heaven.

All I can do now is try to keep moving forward, making Caroline proud when I can.  I anxiously await the day when we are reunited and the void in my heart is once again filled.


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Memory Monday

After Caroline was born, doctors told us that the first 24-48 hours would be telling.  Changes happen with the heart after birth that were likely to be severe for Caroline.  However, she remained stable through that time.  This was one of many, many miracles that we saw because of her.

I had written in our birth plan for Caroline’s heart defect to be confirmed if she lived longer than expected.  We reached that point, but then became uncertain when asked if we still wanted the test done.  The doctors thought that the prenatal testing was valid and were not sure what we would gain by having the test repeated.  We decided to take Caroline home, love on her, and decide about the heart echocardiogram later.

At two weeks old, we decided after much deliberation to schedule Caroline’s echo.  We wondered how it was possible that she was still doing so well, and suspected that her heart defect was not as severe as thought prenatally.  We didn’t want to put Caroline through any more tests than were necessary, but this one was not invasive and would let us know what was going on and if we needed to make any changes to her treatment.  The deciding factor for me was when I asked her pediatrician if she felt comfortable treating Caroline’s symptoms without input from cardiology, and she said that she would feel much more comfortable if they were consulting on her case.  It was time to find out what was happening with Caroline’s heart.

We took Caroline, all bundled up, to the hospital for the test.  I remember it being a very windy day.  We covered Caroline’s car seat in her pink blanket with ballet slippers printed on it.  We arrived early and got inside quickly with her stroller to escape the wind.  Before Caroline’s appointment, we planned to visit the nurses who had taken care of us weeks before on the labor and delivery floor.  They were all amazed at how much Caroline was eating (15 ml every 3-4 hours if I remember correctly) and how well she was doing.  She followed them with her eyes as they swarmed around her, taking in the miracle baby.  We took pictures with the nurses and it was another one of those moments that validated me as a mom; I got to show off my precious newborn and have her met with nothing but smiles.  I am so glad that Caroline got to see all those smiles.

We then went back to the outpatient wing for Caroline’s echo.  They gave me a hospital wristband for her when we checked in, but since she was so small they told me to just hold onto it.  We were soon called back for the echo.  Two women performed Caroline’s scan, and the results were then sent to a local children’s hospital so that a pediatric cardiologist could read them.  Caroline LOVED the warm gel on her chest.  As the tech performed the heart ultrasound, she fell asleep on her mommy.  The tech commented that Caroline was the most well-behaved baby she had ever had for the test – most babies end up screaming and protesting.  Caroline was so easygoing and sweet.

The test took much longer than expected, so Caroline’s daddy had to leave for work before they gave the results.  I talked to the cardiologist and found out that Caroline still had a double-outlet right ventricle (DORV) heart as well as complex problems with her circulation.  I had some hope that the scan would show us that Caroline’s heart was healing, but those hopes were shattered.  Even so, I felt better knowing the situation and having cardiology in on the conversation of how to manage Caroline’s symptoms.  We took our daughter home and spent another amazing month with her.

I say this all the time, but everything about Caroline was a miracle.  It was easy to get discouraged and sad, knowing that your child has a condition with no cure and that any second could be her last.  However, God and Caroline kept me going through all of the tough decisions and heartache.  Having the chance to love Caroline was worth every second of heartache.  Being her mom is the best.

 


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The Potty Chair

Caroline’s great grandfather has made potty chairs for all of his great grandchildren.  After Caroline passed away, he asked us if we still wanted one for her.  We said yes, absolutely.  He sent it to us this week.

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Yes, I know she will never use it.  You’d think getting this would send me into a spiraling mess of grief, but it hasn’t.  Caroline was included in a tradition, and for that I am so thankful.  Whenever anyone thinks of my baby girl, it makes me so happy.  This is such a gift for her and helps me to know that family is still loving on her the way that we are.

I love you more than words can say, Miss Caroline.

 


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Memory Monday

Every Monday, Wednesday, and Friday they came.  Since Caroline was so stable, her nurses came just three days a week for about an hour to check her vitals and be there to support us.

Caroline hated having her vitals taken.  She was not one of those babies who want to be loose and free; instead, she preferred to be comfy cozy in her jammies and wrapped up in a blanket.  It was even better to be cuddled in mommy or daddy’s arms.  So when a nurse came to check her heartbeat, her respiratory rate, and her lungs, she certainly protested.  She did not want that cold stethoscope anywhere near her.

Every exam I asked the nurses how she was doing, and every time her vitals remained stable.  Every exam I asked if her lungs were clear, since I had been told that they would likely fill with fluid due to her heart condition, and the answer was always that they were clear.  Caroline was full of miracles.

Caroline’s nurses were there to answer any questions we had, from cleft palate care to baby rash.  I would have read all of the parenting books I could get my hands on, but I didn’t think I would take her home so I couldn’t bear to read them ahead of time.  I was so grateful to have Caroline’s hospice nurses as a resource.

Because of the quality nursing care that we had, we were able to spend all of our time enjoying and loving our sweet baby girl rather than wondering how she was doing or what to do when she pulled out her o-g tube.  We were able to take care of Miss Caroline and show her all the love in the world.  Every day I am thankful for the time at home with our beautiful child, and for everyone who helped to make it possible.

Missing you so much today, sweetheart.

Mommy loves you.

 


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Survival

November 7th and 8th were all about survival.  A year ago on November 7th, we had our routine anatomy scan ultrasound that showed us that there was something wrong with our baby girl.  A year ago on November 8th, we saw a genetic counselor and MFM to get the worst news of our lives – that our daughter likely had Trisomy 18 or Trisomy 13 and had a 90-95% chance of dying before her first birthday.  We found out a few weeks later that Caroline had Trisomy 13, the rarer of the two conditions.  Any shred of hope for a normal life for our daughter was then gone.  It was devastating on so many levels.

I didn’t know how to handle these dates.  They didn’t mean anything to anyone but me.  Even my husband wasn’t crumbled into a pile of mess the way that I was.  I hoped that family would reach out to me on that difficult day, but no one did.  The dates mean nothing to them.  Only to me.  I know that it’s irrational to expect everyone to worry about me as I pass each milestone but I still hope for it.  It would make me feel less forgotten and alone.  The world is moving on but I am stuck in my grief, and have no intentions of letting it go.  It is my connection to my amazing daughter.  I will never stop loving her, so I will never stop grieving.

On November 7th I went to work.  I had a busy day that kept me distracted, that is after crying on the drive in to work.  That night I came home and ate dinner, then went to the movies with my husband.  We saw St. Vincent.  It was a good movie and a nice distraction.  I needed to survive the day, and did.

The next day, I went in to the city for a training session.  It was with a group of parents and I told my story.  There were tears but I made it through the training and the hour-long drive home.  When I got home, I finally had the chance to break down with the house to myself.  I thought about the bottle of wine in the fridge, but didn’t drink it.  I cried myself to sleep.

November 7th and 8th were hard, but I survived.  It is unbelievable that I have been grieving for a solid year.  It has gone by so quickly and yet so slowly at the same time, the worst and best days of my life.  The juxtaposition of devastation and joy that has occurred in the past year was something I never believed could happen until I experienced it.  It is certainly possible to have the best and worst year of your life at the same time.

 

 


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Proud of Daddy

Caroline and I have good reason to be very proud of her daddy today.

I mentioned a few weeks ago that my husband had been chosen as a finalist in the Target Well Being Dreams contest.  Thank you to all of the Target team members who voted for his dream, because he has been selected as a winner!  This means that Target will in some way (we don’t have details yet) be helping to make his dream come true.  We are so excited!!!

His dream is to hold a toy drive for a local children’s hospital in memory of Caroline.  We have started organizing it on our own, but look forward to Target’s help!

Details can be found at facebook.com/sunshinefromcaroline.

Our baby girl continues to change the world.  This is amazing news after a very difficult week.  Love you always, Miss Caroline.