Elizabeth Anne Trompler
Full Trisomy 13
September 10, 2010 ~ October 4, 2010
I know this week we were going to share an archived Treasure Memory story, but I have decided to highlight a new story. My dear friend Natasha has created a wonderful page for her angel Elizabeth. Along with her page every year she runs an auction called the Elizabeth Experiences and all proceeds go to Now I lay Me Down to Sleep https://www.nowilaymedowntosleep.org/. NILMDTS is a wonderful nonprofit organization that has provided thousands of families of babies who are stillborn or are at risk of dying as newborns with free professional portraits with their baby. I ask that you go and like her page The Elizabeth Experience and keep up-to-date on her next auction. Now here is a little about Elizabeth.
September 10, 2010 was the happiest day of our lives; that is when our sweet baby
girl, Elizabeth Anne Trompler, entered into this world. She looked beautiful and
perfect to us; little did we know the challenges that would be facing us. It is
only through our faith in God that we have been able to make it through this journey.
He is the One that has held my shattered heart together.Not long after delivery,
the doctor warned us of some abnormalities and deficiencies. Just some of these
worries included an underdeveloped brain (which caused many other symptoms such as
the inability to suck and swallow, make voluntary movements, breathing issues, etc),
multiple holes in her heart, enlarged kidneys, clenched fists, rocker heels, gastrointestinal
problems, and blind. Elizabeth never opened her eyes, and the doctors believe they
never developed. You would never know though by just looking at her sweet, sweet
face. After days of testing and observation, we finally received Elizabeth’s diagnosis,
full Trisomy 13. Most babies that are diagnosed with this disease do not make it
to birth. Those that do make it to birth do not usually make it past one year old.
Elizabeth lived 24 days. At first, I refused to believe my baby girl’s condition
was terminal. Every minute I was not spending cuddling my sweet Elizabeth, I was
researching Trisomy 13. At that time, I could not find anything encouraging online,
and I did not have all the Trisomy family contacts and support system I have now.
Through a family member, I did have one contact, but in my stubborn mindset, I did
not use her as a resource. I was an overwhelmed, first time mommy, not wanting to
hear the realities. I encourage all families facing such a diagnosis as Trisomy
13, or a related illness, to reach out and find a Trisomy support system.
I remember sitting in the NICU, holding Elizabeth against my chest, and crying. Her
little body would rise and fall against mine, as the tears flowed down my face and
I gasped for air. I remember my tears splashing against her sweet face. I remember
her soft skin under my lips as I covered her face in kisses. I remember how she
felt in my arms. I remember her sweet baby smell. I remember how she had my pout.
I remember how she defied the odds and sucked on her passy. I remember how she
instantly calmed down in her daddy’s arms. She loved when he rubbed his whiskers
against her face. I remember how she stretched with a purpose, despite being told
her movements were involuntary. I remember it all. I remember.
After nine days in the hospital, we were finally sent home on hospice care. It was
so frightening leaving the safety nets of the hospital and to be expected to run
Elizabeth’s medical equipment at home, but we did it. I firmly believe God will
never give you more than you can handle. He would not allow us to be sent home if
He knew I would not be able to care for her. I am so thankful we had those precious
days at home with our daughter. This gave us the time to make better memories outside
of the hospital environment.
While we were home, we were blessed to receive services from “Now I Lay Me Down to
Sleep”, which is an organization that does complimentary remembrance photography
for families with terminally ill babies or babies born sleeping. Our NILMDTS photographer
spent over four hours in our home capturing the most perfect moments with our sweet
angel. We cherish our photos, because this is all we have left by which to remember
our sweet baby girl. We no longer have our daughter to hold in our arms, but we
will never forget her beauty, and the love and grace she brought into our lives,
when we look at her pictures. Thank you NILMDTS for this precious and perfect gift.
Last year, I started a fundraiser in Elizabeth’s honor, named The Elizabeth Experience.
As part of this fundraiser, we held 2 events, and raised approximately $2,000 for
Now I Lay Me Down to Sleep as a small token of our appreciation. We would love to
make this an annual event to continue honoring our daughter, showing our appreciation
to NILMDTS, and helping ensure other families continue to receive the blessings of
their services. Last year’s event page (via Facebook) was “The 2011 Elizabeth Experience”,
but I am in the process of creating a new Facebook page that will be good for all
future years, simply titled “The Elizabeth Experience”. Please check out our page
and help contribute to our event.
We still miss our Elizabeth Anne, and always will. She will forever have a grasp
on our hearts. We are thankful we had our 24 days with our daughter, and we would
never trade those for the world.
If you would like to follow Elizabeth’s story and my journaling from her diagnosis
to her death and life beyond, please visit her Caring Bridge page at www.caringbridge.org/visit/elizabethtrompler.
Natasha Trompler
We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa
Sept. 10, 2010 -
Oct. 4, 2010
No comments:
Post a Comment