These HRH families have a lot to share. Read about their incredible journeys.
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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 Name: Perry James Adams
Parents: James and Jessica
Birthdate: March 1st, 2012 at 4:20pm
Gestational Age at Birth: 34 weeks
Nicknames: P, Pear Bear, Nugget, Princess P
Favorite book or toy: loves baby dolls, the Wiggles and dancing
Delivering our baby at 34 weeks was not what we had planned, but here we were, 34 weeks pregnant and about to have a C-section. I was suffering from a pregnancy complication, called preeclampsia.
I have known so many people who have had ‘easy’ and ‘perfect’ pregnancies/deliveries and of course you always see the ‘good stuff in the movies…so I expected nothing less. Towards the middle of my pregnancy, I even found myself thinking often about what my labor would be like (where would my water break, how would my husband handle the experience, would it be painful, who would be there to celebrate with us, which doctor would deliver me and most importantly…would the baby be healthy, cute and would it be a boy or a girl). That’s right – it was a surprise, we didn’t know the gender until our baby was born. I actually think the suspense of not knowing, gave us something to think about other than the scary fact that our baby might be born premature.
March 1st, 2012 at 4:20pm – Perry James Adams our healthy baby girl was born! She was just perfect! 4lbs, 4oz and 17.5 inches long and just like that, Perry was whisked off to the NICU. Little did I know that I’d have to wait about 16 hours to see and hold my little girl for the first time. Words cannot describe how much I just wanted to hold my new baby girl.
As hard as it was, not being able to be with my new baby, I have to hand it to my husband – he was such a great daddy…spending time with Perry in the NICU, learning how to adjust to the NICU, changing diapers, holding her and best of all taking lots of pictures and video so he could show me how precious she was. The NICU doctors and nurses were so helpful and patient with my husband during this time. I can’t say enough great things about the NICU and St. Joseph’s Women’s Hospital. They were amazing and so responsive to all of our needs and questions.
Over the next couple weeks, Perry continued to get stronger and stronger. She had started to feed from a bottle for some of her feedings and was even trying to latch onto my breast. We were so proud of our strong little girl! I can remember too, the day that we arrived in the NICU to find the bag from High Risk Hope. We were like kids in a candy store going through the bag – everything was so perfect. What a thoughtful act of kindness that really did make a difference during a difficult time. March 17th, 2012 – Perry was able to come home! We couldn’t wait for this day and were so excited to bring Perry home and introduce her to her new home.
I pray that no one would have to experience time away from their child, have their child be in the hospital or feel the stress of an uncontrollable circumstance. However, one thing we have learned from this experience is that when faced with a tough situation…sometimes you just have to look for the positive and most importantly laugh! I truly hope that our story can help someone who might be facing a similar challenge. Even if it just helps you feel less alone – that’s one thing that I found comforting about High Risk Hope, is that they make you feel anything but alone in a helpless situation. After this scary and unexpected experience we have re-learned the importance to not take things for granted and to really enjoy all the blessings that life has to offer.
Lots of love and blessings!
James, Jessica and Perry Adams