These HRH families have a lot to share. Read about their incredible journeys.
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Full Name: Selah Miller
Parents: Janelle and Jonathan
Nickname: Selahroo or Roo
Birthdate: June 29, 2012
Gestational Age at Birth: 27 weeks
Favorite toy: Spunky the Monkey – the monkey that was
with her everyday in the NICU
I was admitted to St. Joseph’s Women’s Hospital when I was 26 weeks pregnant due to unexplained pre-term labor. After an unexpectedly short 4 days in labor and delivery and on the high risk obstetrics floor, I delivered Selah at 27 weeks via emergency cesarean section. Selah was 2lbs 8oz and 15.5 inches long and miraculously breathing on her own. After an 8 week stay in the Neonatal Intensive Care Unit, Selah came home weighing 5lbs 5oz and full of life and personality.
While on the high risk obstetrics floor, I received a phone call from Heather Barrow to offer her support and empathy. Shortly thereafter, Sarah Cauley delivered a HRH Bed Rest Basket full of all the items I needed and never had time to pack, as I was sent to triage right from the doctor’s office. It was such a comfort to feel the support of women that had been in my shoes, or perhaps more accurately, my bed. Although my time on the high risk obstetrics floor ended up being shorter than we hoped, I was again greeted with support and comfort via HRH’s NICU Napsack that was waiting for me one morning as I arrived to wish my daughter a good morning. Leaving your baby on a nightly basis is one of the hardest things I have done, and the guilt through the night can make for a difficult morning. To be greeted with a cheerful pink bag full of NICU-necessary goodies, including the softest of blankets for my daughter, was such a wonderful surprise. My HRH cup was with me every day of our time at St. Joe’s and while something so simple, it was nice to have a daily reminder of the support given to me by HRH.
Full Names: Adelaide McKay and Genevieve Carmody Carrere
Parents: Elizabeth and Christopher
Birthdate: September 5, 2007
Gestational Age at Birth: 35 weeks
Favorite book or toy: Their baby brother Jack
Our story began in early March 2007 when we found out that we were expecting not one, but TWO babies. We were completely shocked but overjoyed and excited to start our family. At our 12 week ultrasound, they told us the babies were identical and at 14 weeks we found out they were sweet little girls! During our routine perinatologist visit at 18 weeks, we discovered something was very wrong with our babies. The doctor told us that our girls suffered from a severe case of Twin To Twin Transfusion Syndrome. My husband and I were completely overwhelmed and devastated and lost to say the least. After much research, and many phone calls, we found Dr Ruben Quintero, an incredible man who just so happened to be the pioneer of the newest treatment for TTTS… AND who just so happened to practice at Tampa General Hospital, just three miles from our home. The next few days were a blur of tests, questions and prayers. Within five days of our original diagnosis I was checked into the hospital fetal surgery with Dr Quintero. There was never a doubt as to what we should do for our babies as we felt very confident in our decision and in our surgeon. We wanted to give our children every possible chance to fight this horrible disease.
The surgery was a success and we cried tears of relief at the sound of “TWO HEARTBEATS” on our morning ultrasound. The next few weeks and months were spent on bed rest and things were looking good. But at 23 weeks, the u/s tech noticed something wasn’t quite right with our previous donor’s heart and we were sent to a fetal cardiologist for an evaluation. Twin B (our donor, not our recipient) was diagnosed with a right ventricular cardiomyopathy and given a stage of heart failure. Just as we were coming up for air from the surgery, we were knocked down again. I continued to be closely monitored and Twin B’s heart seemed to slightly improve. They could not tell if she had a pulmonary stenosis or a stunned ventricle but they sent us off to meet with the cardiac surgeon. We were treading water at this point, not sure if we could handle much more. We found online organizations for fetal syndromes and began to feel like their was hope. Other heart mom reached out to me and shared their stories and made me feel like we could do this. The next 12 weeks were filled with constant prayer and lots of doctors’ appointments.
We made it to 35 weeks when Adelaide (A) and Genevieve (B) were born at St. Joseph’s Women’s Hospital on September 5th 2007, weighing 4 lbs 8 oz and 3 lb 13 oz, respectively. Both girls gave hearty cries and were swept off to the NICU. Genevieve was quickly transferred across the street to the Cardiac ICU and was in very grave condition. Our sweet girl was much sicker then we could have imagined. She was put on the schedule for open heart surgery (to core out and enlarge her right ventricle, among other things) at 5 days of life. In a twist of events, Genevieve was actually too sick to go to surgery and the next few weeks were very touch and go. Sweet Adelaide spent two weeks as a feeder and grower in the NICU and then was discharged home, amen! While it was a challenge having one in the hospital and one at home, we were so grateful to have her in our arms!
As the weeks passed, Genevieve too grew stronger and her little heart started to stabilize. After six long weeks, they said we could take her home… for a little while. JUST until she was big enough for surgery or JUST until she got too sick at home — we were terrified!! When I look back at those days I am so grateful for all the help we received. Our families and friends were so amazing to us. Helping with the babies, bringing us dinner, holding us in constant prayer… it really took a village.
Our Genevieve was a regular in the cardiac clinic that first year and at every visit we saw progress in her heart, and doctors who told us her healing was miraculous. They still say she may need surgery one day, but her right ventricle (though small) functions at normal levels! What a miracle. Actually, we have two miracles. We feel so blessed to have the outcome that we do, TWO healthy and happy little girls. Adelaide and Genevieve are incredible, sweet and funny little girls. They adore their little brother Jack and are the light of our lives. Our lives will never be the same and we are so grateful to God for our many blessings.