Mothering Caroline Grace

learning how to be the mom of an angel


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NILMDTS Remembrance Walk

My husband and I are attending the Now I Lay Me Down To Sleep remembrance walk in Colorado this year.  Our registration is paid and plane tickets are booked!  I am getting more and more excited for the weekend that will be all about Caroline.

We ordered custom tees yesterday that we will wear during the walk.  They are awesome!  On the front is a picture of the sun (which Caroline loved) with her name and “Beloved Daughter, Trisomy 13 Miracle.”  On the back, we wrote, “Proud Parents Walking for Caroline and Trisomy 13 Awareness,” followed by a beautiful picture of our baby girl.  We made sure to include that Caroline had Trisomy 13 both to raise awareness and in hopes of meeting other parents at the walk.  I can’t wait for the shirts to come in!

We are so thankful for the photographs taken by NILMDTS and the support they have provided.  I am so grateful to the photographer who sat in the hospital waiting room at 3am waiting for Caroline to be born.  The NILMDTS Facebook page has also been a great source of support in our grief.  I anticipate that the walk will be lovely, and can’t wait to spend it honoring Caroline’s memory.  We love you, Miss Caroline!

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A Day at the Zoo

This past weekend, my husband and I went away to the city to spend some time together.  We visited the zoo, and as we went to the visitors center to get a map, we saw a group of about 4 children with special needs and their parents.  The children were in the type of wheelchair that I only dreamed of needing for Caroline.

Something struck me when I saw this group.  I felt a sense of camaraderie with them, even though I carry Caroline in my heart.  I am the mother of a child with special needs, even though no one can see it.  I thought it was wonderful that they had all found each other and were able to have a beautiful day at the zoo together.  I didn’t have support from other parents like this when Caroline was here with us.  I felt an urge to talk to them and hear their stories, but I held back.  I didn’t want to disturb them, so I kept walking.

We got our maps and came out of the visitors center, and they were gone.  I asked my husband if he had noticed the children, and he gave me a knowing smile.  Of course he had.  Caroline is always at the forefront of our minds, and seeing those families was a glimpse of what could have been if she was still here with us.  


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The Winding Hallway

It was familiar, but I was surprised how quickly I had forgotten the details.  Large oil paintings in bright colors lined a long, winding hallway.  We had to walk down this hallway to get to our appointment.  The colors seemed a little brighter this time.

Yesterday, my husband and I drove into the city for our final appointment concerning Caroline.  We decided against an amniocentesis during my pregnancy, and instead had diagnostic chromosome testing done at Caroline’s birth.  We got the phone call from my OB’s office a few weeks later to tell us that Caroline did have Trisomy 13.  In the moment, I didn’t ask any questions or need to know more.  Whether or not we were genetically predisposed to Trisomy 13 had no impact on taking care of our precious baby girl.  Now, our priorities have shifted and we decided it was time to review the results and our risk for a future baby to have trisomy.  I finally made the appointment to go back to the city for genetic counseling, to go over Caroline’s results.

I had nerves all morning.  We were going back to the office where a genetic counselor first broke the news to us that our child had Trisomy 18 or 13, and was not likely to survive.  Being back in that office put me on edge, and I sat in the waiting room with my arms crossed, looking very uncomfortable.  I was.

We were finally called back, into the same conference room where our hopes and dreams had been destroyed.  The genetic counselor that we saw was not the same person that we saw when we were pregnant with Caroline.  She started by asking us about our time with Caroline.  It had been a long time since I’d told her story from start to finish to a new person, but it felt so good to do so, even with tears.  She then took the time to look at the book of pictures that I brought with me.  We know that the time that Caroline spent with us was truly a miracle and she was the exception rather than the rule, so it was nice to show this woman that babies with Trisomy 13 can live.  Caroline lived for a short time, but that doesn’t make her any less of a person.  In fact, I think it makes her more of a person.

We then talked about the results.  The cells that were analyzed all showed full Trisomy 13, meaning that it is the type that happens randomly and is not inherited.  This means that our recurrence risk is about 1%.  This looks like a great number, but when you’ve already been in the 1% category, you start to lose faith in statistics.  However, moving forward, we now know that we are not putting future children at an unreasonable risk for trisomy.  We hope to have more children someday.

One thing that meant the world to me was that our genetic counselor treated Caroline as a person.  She used her name throughout the appointment and celebrated her life with us.

On our way out, I gave a copy of Caroline’s picture to the genetic counselor, her student, and the receptionist in the office.  The genetic counselors were thrilled to have a picture of Caroline, and I was happy that their image of Trisomy 13 would go beyond what they saw in textbooks.  They would know that every baby presents with Trisomy 13 in different ways, and remember how our little girl beat every odd to spend time at home with her family.

When I gave a copy to the receptionist, she broke into tears and said that looking at Caroline’s picture will remind her how precious life is and help her through her hard day.  I told her that Caroline is our miracle.  She was so sweet, and I was amazed at the way that Caroline’s picture was able to move people.

Leaving that office for hopefully the last time, I felt a sense of relief as we passed through the winding hallway.  Instead of evoking memories of pain, it has softened to evoke memories of all the people in that office that have loved Caroline.  She continues to inspire everyone who hears her story.  Caroline, you amaze me every single day.  I love, love, love 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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Miracles

My daughter is such a miracle.  She had such an impact on the world in her short time here, but she also taught me and my husband so much about love and miracles.

When we found out about her diagnosis, it was crushing.  We cried for days, mourning the life we dreamed of living with her.  We named her Caroline and decided that we would make every memory with her that we could during the rest of my pregnancy, and we did.  I started a journal and made notes about doctor’s appointments as well as what was going on in our lives and how I was feeling, emotionally and physically.  We bought the essentials that we needed for the hospital, packed our bags, and waited as we approached full term.

Doctors prepared us for the worst.  First we didn’t know if she would make it to term.  Then we didn’t know if she would be stillborn.  Then we didn’t know if we’d have minutes, hours, or days with our daughter.  It seemed that the most likely scenario was to go home from the hospital without her.

We prayed to have some time with Caroline to show her that we love her, and that she would not suffer.  I never prayed for her to be healed.  I can’t say exactly why I never did.  Perhaps because of my faith in medicine and her doctors.  Even more so, perhaps because she was perfect the way she was.  I couldn’t ask any more of her than to be the beautiful person she was meant to be.

It was a miracle that Caroline was born alive.  Her OB cried along beside us, as she didn’t even need any resuscitation.  Having minutes with her was another miracle.  Having hours with her was yet another miracle.  Taking her home from the hospital was another miracle.  Having the time at home to care for her and love her and meet more of her family was another miracle.  Having both of her parents holding her tight while she passed from this world to the next was another miracle.

Caroline had a special message to send to the world.  She showed us that life is precious and delicate and should never be taken for granted.  She also showed us the beautiful strength she was given to survive well beyond the time predicted with her diagnosis.  She made us parents, and showed us the meaning of unconditional love.  When my husband first brought Caroline to me after she was born, I remember looking at those big, bright eyes and being amazed by the miracle in my arms.  What a miracle it was to be her mother.

Every baby is a miracle.  Every baby is here for a purpose, and every baby matters, even if the only life they knew was that in their mother’s womb.  Being Caroline’s mom has been the most difficult experience of my life, but more importantly, the greatest joy I have ever known.


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Decisions Made

With Caroline, we had to make a lot of difficult decisions, often when there were many bad options and no good options.  Facing a rare trisomy diagnosis is terrifying, and I have no judgement for anyone in the position that we were in.  The decisions that you make are made out of love and the best decisions for your individual family.

Gracefully, as we made decisions, they turned out to be the right ones for us.

One big decision was delivery.  Once Caroline approached term and had a shot at survival, I debated whether or not we should deliver her vaginally or have a c-section.  My OB was willing to do whatever we wanted, despite our MFM’s recommendation that a c-section wasn’t worth the risk for a child that is not going to live.  My OB’s flexibility was kind but lacked guidance – for weeks I went back and forth about it.  When you are facing something like this, you wish that doctors could tell you what you should do, but in the end, they have no idea either.  There are no guarantees.  It is your decision to make.

There were very few upsides and many downsides.  I made so many pros and cons lists, with cons dominating each side.  With a vaginal delivery, there was less risk to me and future children.  I would be able to hold Caroline right away and would not be drugged up for my time with her (I planned to go med-free, partially for this reason).  She would get the benefits to her lungs of squeezing down the birth canal.  The downside was that vaginal delivery raised the risk of stillbirth – Trisomy 13 babies are sometimes so fragile that they do not survive vaginal delivery.  On the other hand, a c-section gave Caroline a better chance of being born alive.  However, I would be medicated during delivery and if she only lived for a few minutes, I would never be able to hold her because they would still be sewing me up.

These are the hard realities that bounced around my thoughts in that 3rd trimester.  Either decision was likely a lose.  The advice that I got most often was to think about what I would regret later, but either way, regrets were a possibility.

We decided in the end to stick to our original plan and had a vaginal delivery without monitoring.  We decided to take an emergency c-section off the table.  I did not want to know if Caroline’s heart had stopped during labor so that I could continue laboring with a little bit of hope.  I had a picture of Caroline’s heartbeat trace in a frame on the tray in the delivery room, and it helped me to think positively that she would be alive when she was born.  It was next to the picture of our cats, so that she could meet them if she never came home with us.

Again, gracefully, we made the right decision for us.  Caroline was born with eyes wide open and crying, even though the neonatologist had thought that she wouldn’t have the strength to cry.  Thankfully, she was alive and doing very well!  We took her home a few days later, and she spent most of her life at home on hospice, cuddling with her family, feeling the sunshine, and being kissed over and over and over.  She is my miracle baby who overcame all the odds and gave me the best 58 days of my life.  She is my favorite person and we fought hard for her to have the best quality of life that she could.  I thank God every day for my time with her and that she did not suffer.

No regrets.