These HRH families have a lot to share. Read about their incredible journeys.
Choose a Story to View or share your own story
Full Name: Theo Carbone
Parents: Emily and Anthony
Birthdate: December 13, 2013
Gestational Age at Birth: 23 weeks and 5 days
Favorite Book or Toy: 101 Dalmations
My water broke when I was 20 weeks pregnant with Theo. We were admitted to St. Joseph’s Women’s Hospital and I was put on strict bed rest at the hospital – no getting up to go to the bathroom, no showering, no sitting up and no walking.
We met daily with our OB-GYN and various other doctors including perinatologists and neonatologists, and had very difficult conversations about the fate of our baby. I was put on IV fluids and antibiotics to prevent infection. The odds were I would go into labor before Theo reached viability or if we did reached viability, our baby would be very sick, with a host of health problems. Despite all of this, we stayed positive and became determined to do everything in our power to save our baby!
During my hospital stay, we received such amazing support from family, friends, hospital staff and High Risk Hope. I truly believe this support enabled us to remain positive about our outcome and ‘keep our eyes on the prize.’ Family and friends made us dinners, had hospital slumber parties and helped my husband care for our two year old son at home.
We marked our bed rest milestones with little celebrations and kept working to get to 24 weeks gestation, which is when we would receive the all-important steroid shots to help Theo’s lungs get stronger. Following a bout with a terrible stomach bug, my OB gave us our first round of steroids when I was 23 weeks, 4 days pregnant. I got the next round at 23 weeks, 5 days.
The evening I got the second steroid shot I began to have consistent contractions. As the contractions got stronger and closer together, the doctor took us down to Labor & Delivery to ‘monitor’ us for the night. I knew what was happening – I was going to have my baby that night and we wouldn’t know if he was going to survive.
After laboring for about three hours, Theo was born at 23 weeks, 5 days, and weighed 1 pound 8 ounces. The delivery room was silent – no baby crying and the NICU team quietly worked to begin prepping Theo for his journey up to the NICU. We would have to wait until he was stabilized to go up and see him.
Several hours later, we were able to go up and visit our baby. My husband wheeled me over to his dark room and incubator. I saw his tiny toes poking out of the plastic he was wrapped in and felt an overwhelming sense of joy. There was our baby that we fought so hard for!! We did not think about our long road in the NICU.
As so many NICU parents, nurses, doctors and social workers will tell you – the NICU is a LONG roller coaster ride. The ups and downs can change in an instant, with your baby fighting to live and enduring painful surgeries and procedures on their tiny bodies. During this time, I reached out to High Risk Hope after reading Heather’s similar story about hospital bed rest.
My mother and I volunteered to meet at Heather’s house for HRH’s ‘packing party’ where we would assemble Bed Rest Baskets and NICU Napsacks for families on hospital bed rest and in the NICU. When I met Heather and a few of the other volunteers I instantly felt like someone actually understood what we were going through. Theo was still only about a month old and things were very intense in the NICU. The HRH volunteers rallied around us, offering to chat, get coffee and share their experiences. It was amazing!!!
We rode the NICU roller coaster for 113 days with good days, terrifying days and surprisingly normal days. We learned how to feed Theo, make him feel comfortable and connect with him even though he was in his incubator.
On April 3, 2012, Theo came home to his family! I was so nervous since he was on oxygen, a pulse Ox and an apnea monitor, but I quickly learned how to work with the devices and felt confident. Slowly but surely, Theo got better and better although we are still working to catch up. He is thriving!
My family and I are so proud of Theo’s strength and determination to survive. He did not give up and neither did we and that is my proudest moment.
HRH was incredibly supportive throughout our time on bed rest and in the NICU. From the Bed Rest Basket to NICU Napsack to connecting with other moms, HRH is such an amazing support system for parents experience high risk pregnancy and long NICU stays.
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.