We kept her name a sweet surprise, as many of you know. I now can reveal to you the importance of her beautiful name!
Heather Faith is named after two extremely important people in our lives. Our sweet little Heather is named after Heather Stolle, who has been my life role model. I met her when I was 13 years old at her dance studio, Heather Stolle's School of Dance, and had my very first dance lesson from her. I was so excited, took class, and was horrible. However, Big Heather saw potential in me, and offered free dance to me if she could train me to be her assistant. Let me remind you, this is the first dance class I ever took in my life. From there, God made magic happen. We had an amazing employee/employer relationship, which evolved into her molding me into a dancer, instructor, wife, mother, and most of all, Christian. Heather Stolle is who I always looked up to & who I wanted to one day be just like! I've had this name saved for the last seven years & it was my dream to one day, if I had a little girl, to name her Heather!
Faith & JC Schilling are one of our amazing Air Force couples that were instantly part of our family. We met them in Pensacola, but our friendship built more in Oklahoma. The best thing about the Air Force is the people we meet and Faith and JC are our two special gems. Thomas & JC will say "I Love You" at the end of their phone calls, and Faith and I will cook 24 hours non stop if you let us. We love each other, we "get" each other, and we were just all meant to be best friends! This is where we chose her middle name, and also chose them as our Godparents for our sweet angel!
Immediately after delivery, the hospital staff rushed our sweet angel to the NICU to be intubated. I wasn't able to see her for about five hours after delivery, which left my heart aching in agony wanting to hold and bond with the beautiful child I carried for nine months.
The pediatrician came in to inform us that Heather had many abnormalities, but her breathing was the most crucial at this point. Heather took her very first flight with her Daddy to Children's Hospital in Aurora, Colorado. I was discharged the following morning and booked a one way flight out here about 24 hours later.
When we arrived, several doctors, surgeons, specialists, case workers, social workers, and nurses were already on our team. Heather is very popular here! After many tests, waiting, doctors, and tears, we received the chromosome testing back. Heather Faith's prognosis is Complete Trisomy 22, meaning she has three copies of the 22nd chromosome instead of the normal two copies. There have been about 20 reported medical cases in the last 20 years with the average life expectancy of 3 days of life. Complete Trisomy 22 is a very common reason for miscarriages in the first trimester & it's very rare that a baby is able to be held full term in pregnancy. In addition, it's rare for babies to live past the third or fourth day of life, and today Heather is 13 DAYS OLD! She has already beaten the odds above & beyond and is truly a MIRACLE BABY!
Heather is currently on a ventilator, has a feeding tube leading directly to her intestine to bypass the stomach preventing any type of reflux, has copocephaly, (enlarged ventricles in her brain), an absent corpus collosum (the "bridge" the links the left and right sides of the brain), glaucoma, cleft palate, a dysplastic ear, shortened neck, three holes in her heart (ASD, VSD, & PDA), sub-epiglottal stenosis (narrowing), a morgagni hernia, hyperplastic fingernails, sandal gap toes, missing right kidney, and a recto-vaginal fistula.
Before we are able to come home, Heather has to be slowly taken off her ventilator to breathe on her own, find out the most efficient way to feed her, heart surgery, hernia surgery, and surgery to reconstruct her anus or have a colostomy performed.
We had what we thought was the perfect pregnancy. I enjoyed every second of my pregnancy and we regret absolutely nothing. Of course we had thoughts run through our minds, "What did we do wrong?" & "Why us?", but now we know. We know God chose US to take care of this perfect & beautiful little princess. We love her more than we ever could have imagined, and if Heather has proven to be a fighter up to this point, her Daddy & I will fight with all our power, strength, & FAITH to bring our daughter home! We know it's a long journey, and a patient one, but we have never felt so right about anything in our entire lives! We decided long before we knew Heather's condition that we would do anything & everything we could to fight for our beautiful daughter as long as God was willing.
We know the statistics, we know what the doctors have told us, but each day is a blessing from God, and YOUR PRAYERS have made the biggest impact in our lives! We have never felt the power of prayer & FAITH as much as we have in the past 12 days. It's truly been miraculous & uplifting beyond words!
We are so appreciative & overwhelmed by our care packages, cards, letters, gifts, and amazing generosity of The Heather Faith Project including donations from our 23rd Bomber Squadron, River Rats, and Air Warrior Courage Foundation. A special thank you goes out to Tricia Lohmeyer & Stacey Morrison for creating The Heather Faith Project! We know we will have added costs with plane tickets back & forth for check ups and surgeries, supplies, and home care, so it literally makes our hearts swell in gratefulness from all your love, support, generosity, and prayers! Our hearts are just overwhelmed & we know that this is 100% a GOD THING! I don't know how people do not believe in God, especially after witnessing Heather's story!
Thank you thank you thank you from the bottom of our hearts & every ounce of our being from our families, friends, dance family, Air Force family, new friends, and some supporters we have not even met yet. You have lifted our spirits and given us more strength than you could possibly imagine!
WE LOVE YOU & THANK YOU FOR SUPPORTING OUR PERFECTLY MADE HEATHER FAITH!
Much love, prayers, and support from many little girls and blessed moms in Bastrop!
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