Mothering Caroline Grace

learning how to be the mom of an angel


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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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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.