Mothering Caroline Grace

learning how to be the mom of an angel


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Memory Monday

Caroline’s aunts and uncles on her daddy’s side drove out to visit us for a few days.  They were so excited to meet the niece that they didn’t know they would get the chance to meet.

Caroline is the first girl cousin in the family, and her two cousins were excited to meet her as well.  One asked his mom, “Can’t they just fix her heart?” after being told how Caroline would not be with us for long.  When I heard of this, my heart ached for him and for my family.  I wish it were that simple.

When everyone arrived, they were so thrilled to hold Miss Caroline.  Although they were nervous about her breathing, they all did well with keeping her in a good position on her side.  Her younger boy cousin was shy around her because of her cleft lip and palate, but her older boy cousin held Caroline and said, “I’m so glad we came.”  Caroline’s aunt works in children’s clothing and brought all of the New England sports gear for Caroline that we could not get here.  We dressed her in a Patriots onesie that was of course, pink.  The Patriots were the one team that I really called my own growing up, so it was special for both me and my husband to dress Caroline in her home team’s outfit.  She still kept her girly look with a matching headband.  Caroline was always in style.

This weekend we celebrated a Superbowl win, and I think Caroline was cheering with us, from heaven.  For some reason the Superbowl without her was so hard.  I cried myself to sleep every night this weekend missing her.  We were supposed to see our team win as a family, and I couldn’t shake the thought that she should be wearing another Patriots outfit, one that is much bigger.

I love and miss you, baby.  So much.

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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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Memory Monday

I was excited to get outside and give Caroline some new experiences.  We had gone for a few short walks with her, and a short ride in her stroller, but I wanted to take her to the park.

My mom and I waited one afternoon until the perfect time to take her.  She had just been fed and changed, so we wouldn’t need to worry about syringes or heating breastmilk while we were out.  I packed up a bag of anything we might need – some extra diapers, blankets, and pacifiers.  I strapped her into her car seat that was attached to the stroller and we were ready to go!  However, Caroline had other ideas.  She started crying in the car seat, and didn’t let up as we walked down the drive.  Although it was the perfect day for me, Caroline had other ideas, so we turned around and went home.

A few days later the weather was nice again and I wanted to give the walk in the park another try.  At the perfect time in the afternoon, we made a similar attempt.  Again, as we went down the drive, Caroline started to cry.  Defeated, I turned around.  However, as we were almost to my door, Caroline relaxed and fell asleep.  We turned around again and were off!  The park is across the street from my apartment, and we soon made it.  Caroline did some looking around and some sleeping.  We did the small loop around the park, not wanting to press our luck, and as we passed walkers and joggers I was asked several times how old she was.  If I remember correctly, I think she was about 7 weeks old at the time.  It was nice to be out in public with Caroline and to be asked these questions.  I think it helped to validate my status as a mom.  Caroline loved the sunshine and enjoyed our walk, and after some pictures we started home.  Just as we got to my door, she started to get upset again.  I think she was getting warm from being outside for so long, so I took her out of the car seat when we got through the door and helped her to cool off.

I love that we have this memory together, of a mom and her baby doing such a normal mom and baby thing.  I love that Caroline had the chance to show her personality and be herself during her time here.  She was the sweetest little baby and I miss everything about her.  Now when I walk in the park, I carry her in my heart.