Tuesday, March 25, 2014

Hannah's Hope


This guest post is penned in loving memory of Ava Elizabeth Reed and Karina Nicole Robledo; and in honor of their Mommy's, Amy Paulsen-Reed and Jessika Robledo, TS moms who held their tiny stillborn daughter's for only a moment here, but will hold them in their hearts forever.

"Rejoice always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."  1 Thessalonians 5:16-18

Every good thing you've ever been told about grandparenting is true, and then some. Hello, I'm Patti Hayes, and I'm a grandmother of four, two-year-old Nathanael, one-year-old Sarah, and two miracles  on the way, one of whom we know is a girl because she has all the indicators of Turner syndrome.

The first cyst was discovered at nine weeks gestation, but my youngest son and daughter-in-love left that appointment hopeful. Four weeks later, at Leslie's next OB appointment, a second ultrasound revealed another cyst on the back of baby's neck. A Maternity21 blood test followed, and our days of brutal waiting, painful trust, and agonizing hope began. As a family we entered what some have called God's Waiting Room where Peter & Leslie, Hannah's parents, continue to have front row seats.

Prior to January 13 I'd never heard of Turner syndrome or any of the other medical terms, cystic hygroma, aortic coarctation, lymphedema, and hydrops, just to name a few, that have since become part of my vocabulary.

I accompanied Peter and Leslie to their first appointment with the specialist, a Perinatologist who specializes in fetal and maternal medicine. He drew a diagram to explain the ultrasound pictures and answered our questions. When we left that meeting our hearts were heavy and our heads were spinning with the grim prognosis.

Now, almost twelve weeks later, following three appointments with the Perinatologist and one with the Pediatric Cardiologist, I'm happy to report that  Hannah's condition has improved immensely. There is only a small indication of the cystic hygroma that for so many weeks posed the threat of hydrops, and baby girl was even given a cardiovascular score of nine out of ten by the cardiologist. Though our specialist has cautioned we're not out of the woods yet, he is guardedly optimistic.

Our darling third grandchild is due July 15, so we still have some weeks remaining in God's Waiting Room, where the waiting is anything but passive. Rather, it is a time for believing God for a miracle, hoping in His Word, giving thanks no matter what, and trusting in His Sovereignty.

Hannah means grace of God, and Beatrice, her middle name, means bringer of joy, so this sweet little girl who captured our hearts long before we dared hope to get to meet her has already lived up to and beyond both names. If you'd like to join us in prayer and be a part of Hannah's hope, we would be humbled by and deeply grateful for every prayer offered on behalf of Hannah Beatrice and our family. 

Patti, Hannah's Grandmother
Tampa, Florida 

 

Tuesday, March 18, 2014

Love bears all things...


“Love bears all things, believes all things, hopes all things, and endures all things.”
1  Corinthians 13:7

Our story begins with our first ultrasound we had with our daughter, Alba. We were excited, scared, everything an expectant parent would be. With just 15 minutes into the ultrasound, we heard the words "Cystic Hygroma" for the first time in our lives. We were devastated. Our baby was sick. We knew at that point our baby either had Noonan syndrome or Turner syndrome. A few months later we had a Amnio and that's the day we found out our Alba was a little girl...with Turner syndrome.

As the pregnancy progressed, other issues began to show up. Five days before Alba was born we found out she had Hypoplasitic, also known as Left Heart syndrome. We heard another suggestion for the first time…"Heart Transplant".

On September 22nd, 2010 our little miracle was born. Alba was very puffy, but so full of life. Doctors immediately placed her on life support and within 9 days old she was flown to St. Louis Children's Hospital for transplant evaluation. After many issues in St. Louis, the doctor decided to list her for a new heart.

On November 27th, 2010 Alba got her new perfect heart after she had coded twice, endured 30 surgeries, and beat everything that has ever been thrown at her. She is now an active 3 year old and even though she shows a lot of the characteristics that go along with Turner syndrome, Turner syndrome will never define her.

God has shown us that nothing can hold anyone back if you love and believe. We never lost hope that we would have our little Alba home someday because all things are possible through God.

Jason Carter, Alba’s Daddy

Together we change lives and create awareness for Turner Syndrome, CHD, and Organ Donation.

To learn more about The Alba Carter Foundation, please click: http://www.acarterfoundation.org/
 
Little Alba and their foundation blankets.


Tuesday, March 11, 2014

God Has a Special Plan


"Yet you brought me out of the womb; you made me trust in you even at my mother’s breast.  From birth I was cast upon you; from my mother’s womb you have been my God." Psalm 22:9-10
I am a 59 year old with TS.  We sure hadn’t heard of it or knew anything about it when I was diagnosed at age 16.  I did meet three other girls with TS while in the research unit of a children’s hospital in Chicago.  I also have sarcoidosis, a rare autoimmune disorder, which I had never heard of either.  To top that all off, I was diagnosed with leukemia a year and a half ago.  God has blessed me because it is slow progressing and I haven’t had to start chemotherapy yet, even though the doctor said that the genetic makeup shows that it can be rapidly developing.  

I have an Associate Degree in computer programming and worked for the state of Illinois working up from a data input operator to a computer systems analyst until retiring.  I am married and we were very blessed to adopt a newborn girl.  She is now a 33 year old woman, married three years ago, and became the mother of our beautiful granddaughter and a lawyer at the end of last year.  I really enjoy retirement and am very active in church activities and Bible studies.  I am also involved in a women’s ministry that tries to bring God’s Word to the unchurched. In my spare time I like reading, embroidering, and we like to travel.  We have been to London, Scotland, the lower Mississippi River on a river boat cruise, Alaska, and most recently Israel.

My biggest challenge of having TS is the ear infections, ear surgeries, and therefore the profound hearing loss.  Luckily the hearing aid and transmitter that I wear help a lot.  I truly believe that God has a special plan for each and every one of us who he chose to be conceived and born despite the TS odds against us.
Janice Suttie
Springfield, IL

 
Janice and her husband, Robert.