Mothering Caroline Grace

learning how to be the mom of an angel


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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

Every day holding Caroline was such a blessing.

She was so light that you could almost forget that she was on your chest.  Her breathing was best on her side, so that was how we would always cuddle.  She slept often, fatigued by her heart condition, but only got fussy in the evenings.  She never complained about being passed around from person to person.  When she was first born she liked to be wrapped up in a swaddle, and later on she liked to have her limbs free to wiggle.  She wore a new outfit almost every day, and we would find mittens and socks to match.

She had the most amazing new baby smell and her hair was SO beautiful.  It was very curly and somehow both dirty blonde and strawberry blonde in color.  She loved to suck on her pacifier, but you had to hold it in place for her.  Sometimes she would swing her head from side to side when she didn’t want the pacifier, making the cutest noise.

Every day I told her that I loved her and kissed her forehead.  Probably a thousand times.  Every day I told her that she was a miracle baby, my miracle baby.

We will cuddle again in heaven, sweetheart.  Your mama still loves you very much.  See you soon, Miss Caroline.


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A Little about Trisomy 13

My daughter was born with Trisomy 13, a rare condition also known as Patau Syndrome.  There are many statistics that float around the internet and between doctors regarding the incidence, but one is that it occurs 1 in 16,000 live births.

Trisomy 13 is an extra copy of the 13th chromosome.  We were told that there was nothing we did to cause it or could have done to prevent it.  It happens in a similar way to Down Syndrome, which is an extra copy of the 21st chromosome.  However, the developmental problems and birth defects are more severe with Trisomy 13.  At every OB appointment, I got nervous as he searched for her heartbeat – we were told that she could pass at any time.  My husband always came with me to my appointments, and when they became more frequent at the end of my pregnancy I told him he didn’t need to always come with me.  He replied that he didn’t want me to be alone if my OB couldn’t find Caroline’s heartbeat.

Caroline had most of the common characteristics of children with Trisomy 13; she had a severe heart defect, cleft lip and palate, and an extra pinky on each hand.  Something that I believe helped her to survive as long as she did was that her brain was structurally normal, while many children with Trisomy 13 have a condition called holoprosencephaly.

Despite all of her medical problems, Caroline was the sweetest, happiest child.  She was comfortable and in our arms for 58 amazing days.  We did everything we could to give her the best quality of life that we could while she was with us.  Miss Caroline is terribly missed and I am so grateful for the time we had with her.

Here is a link to more information about Trisomy 13:

http://www.nlm.nih.gov/medlineplus/ency/article/001660.htm