Every month, High Risk Hope would like to highlight ongoing topics, frustrations, or curiosities in your very unique journey with high-risk pregnancy and/or premature birth. Mothers, fathers, family, and friends will touch on their personal tools, tips, and techniques to many of the ongoing concerns you face after having a high-risk pregnancy or a premature infant. Above all, remember that there are no right or wrong answers, only other parents and families figuring it out along the way, just like you. Here is what they have to say this month. Do you have a question you’d like addressed on The Parent Perspective? Email us today!

Sandra Carlin, Issac born at 25 weeks

“November 2017 was the first Tot Trot our family attended. While several families celebrated their child’s NICU graduation, ours was still fighting for his life. We learned about the Tot Trot from a flyer in our son’s NICU. Not knowing our son’s future, who was born at 25 weeks gestation in October, we decided to attend the Tot Trot on his behalf as a way to solidify with the universe the existence of our son. Family flew in from out of town to join us, and we were also met by several friends unexpectedly on the day of the Tot Trot. Just seeing all the preemie babies who made it, especially on the Miracle Mile, was all the encouragement we needed. Isaac came home after 104 days in the NICU, and the following year his image was part of the Miracle Mile, with the purpose to give hope to those starting this journey. ”

Andrea Bryner, Grayson born at 27 weeks

“Our son Grayson was born at 27 weeks, 3 days after my water broke at 21 weeks 4 days. He was in the NICU for 130 days (4.5 months) and it was a wild ride with many twists and turns. When we were finally released from the hospital, we were home for about 2 weeks before the Tot Trot. Even though Grayson was still on oxygen, we went and were so glad we did. We were able to reconnect with Grayson’s primary night nurse, Brandi, and his primary neonatologist, Dr. Vargas. Our family was able to see other kids who were preemies, running and playing around the Tot Trot, and it gave us continued hope Grayson will one day be following in their footsteps. To see all of the former NICU babies so happy and healthy made our hearts full. Thank you, HRH, for making this event happen. We can’t wait until this year!”

Jennifer Fabian, John Paul born at 33 weeks

“Attending the Tot Trot to me has changed over the past couple of years.  Our first attendance, in 2017, our son was 7 months old.  At that time, we were still dealing with medical issues and life was not easy.  Attending the Tot Trot at that time gave us hope that things would get better.  In 2018, we had a strong, happy, healthy boy and being there meant giving other people hope.  We had been through the worst of it and it was our turn to show new parents things can and will get better.  We had the proof.  Over the past few years we have been very successful with fundraising for HRH, I volunteered for the race committee in 2018 and put together a great team of friends and family.  HRH has, and always will have, a special place in our hearts.  We are looking forward to this year’s Tot Trot!”

Holly Stallings, Henry born at 34 weeks

“We are so thankful for our little miracle, Henry (aka Hank), who made us parents.  An unconventional pregnancy that resulted in hospital bedrest and a NICU stint for our son introduced us to High Risk Hope.  Though our support system was strong, we did not know anyone who had experienced these unforeseen circumstances before and wished we had someone to rely on for advice, guidance, and perspective. We knew once our son was healthy, we wanted to join a community that provided just that. High Risk Hope and the Tot Trot have embraced our family and welcomed us into their community with open arms.  This year we will participate for the second year as team ‘HANK You Very Much’ to honor and celebrate our superhero.  We have invited our friends and family to join us in raising money for this cause that is so close to our hearts and we are working hard to be the top fundraising team two years in a row! The Tot Trot truly is a fun event for the whole family.  I invite you to join my family and the many others as we #FightForPreemies! “

Register for the 7th Annual High Risk Hope Tot Trot presented by Jersey Mike’s Subs today! Click here.

Angie has been a volunteer at High Risk Hope for 3+ years. She first heard of HRH when she was on bed rest at St. Joseph’s Women’s Hospital while 25 weeks pregnant with twins. On February 20^th at 28 weeks pregnant, she gave birth to her son Beren weighing 2 lbs. 9 oz. and daughter Adalyn weighing 2 lbs. 11 oz. They were the most beautiful people Angie and her husband TJ had ever seen. They were the tiny precious gifts they dreamed of for so many years.

Adalyn had a few complications at birth but Beren was in great shape, as strong and healthy as you can hope for with a premature birth. So you can imagine the shock and heartbreak when they lost Beren just five days later. It took a month to learn the cause of his death; an autopsy revealed he had an undetectable infection around his heart. Angie and TJ treasure the few days they had to hold Beren and show him how much they love him. They think about him and miss him constantly. Adalyn remained in the NICU for 95 days. She is now a healthy, sweet, tough 3-and-a-half-year-old and a constant reminder to everyone of how precious life is. She loves going to the beach, reading books, animals and playing with her friends in preschool.

Angie hopes in sharing Beren’s story, families know it is ok to talk about their babies that are no longer with us. Additionally, sharing her daughter Adalyn’s story, one where preemies can – against all odds – have the support and care they need to fight and thrive, helps inspire all who get the chance to meet her. Angie was crucial in developing HRH’s Bereavement Program. Next month, in honor of Pregnancy & Infant Loss Awareness Month, she will be shedding light on the creation of our Bereavement Boxes and how they have helped many families in your community so far.  We are very excited to have someone as passionate about our mission as Angie. Help us welcome her to the HRH team!

Every month, High Risk Hope would like to highlight ongoing topics, frustrations, or curiosities in your very unique journey with high-risk pregnancy and/or premature birth. Mothers, fathers, family, and friends will touch on their personal tools, tips, and techniques to many of the ongoing concerns you face after having a high-risk pregnancy or a premature infant. Above all, remember that there are no right or wrong answers, only other parents and families figuring it out along the way, just like you. Here is what they have to say this month. Do you have a question you’d like addressed on The Parent Perspective? Email us today!

Kassandra Morales | Jaxon, now 1 year old

“Our experience in the NICU was scary but once you ask questions and start learning about the machines, every beep of those machines and cables make you feel more confident. Life after the NICU is a little challenging. After 57 days in the NICU, Jaxon finally came home with me. It was such an adjustment–no more hospital trips, nobody to guide you, and now what you learned at the hospital is your every day life. When Jaxon was 5 months old, he had to get an NG Tube (Nasogastric tube) for feeding and once the NG tube was placed, it was KEY to ask as many questions as I wanted and whenever I wanted until learning and feeling confident. NG tube feedings required checking placement every feeding, calculating the volume of formula and duration, changing constantly the tape holding the tube, scheduling feedings and finding a good position for feeding. Now he is 1 year and 6 months and no longer has the NG Tube, but we do have therapies they are a big part of Jaxon’s development. We take it day by day and every single week he has more and more improvements!”

Laura Luksik | Emily, now 3 years old

“Bringing Emily home after 77 days in the NICU was one of the best days of our lives. We had been waiting for this day very impatiently and by this point, we were mentally prepared and excited! Our older son was a preemie too and he spent 12 days in the NICU. Although it definitely was not as long and definitely not as intense, it was something we had done before and we were more than ready to have our family together and complete under one roof. Of course, we had our worries and anxieties. I remember the day we finally got discharged we were running out that night trying to find an Owlet sock (tracks heart rate and oxygen level); unfortunately, we could not find one in stock and we could not wait for it to be ordered. After a stressful night without any cords or monitors, Emily slept without incident and that instantly made us more comfortable and reassured that we had nothing to worry about at home. We were also more than ready to be ‘normal’ again and we quickly fell into our new family’s routine. We were not as worried about being out in public as she had already received her first set of shots and she was almost 3 months old at the time of discharge. For our family, we felt we overcame the challenges pretty quickly knowing we had already done this once before and also having had so long to mentally prepare for this day. It was a welcome relief and we wanted it to be a day full of love and excitement rather than worries and stress.”

Marshella Pounds | Emerson, now 2 years old

“The main thing I remember about taking Emerson home was the terrifying feeling around having to change his trach ties as well as his trach. I remember thinking that his trach was going to slip out and that we would definitely end up back in the hospital. I was relieved when that didn’t happen. Aside from that, I remember our first trip to the doctor’s office when we had packed all of his bags and got him in the car with his vent, but it kept alarming. We could not figure out what was wrong and we followed all of the instructions our respiratory therapist gave us. I ended up texting her and it turned out that the vent alarms when it is unplugged and we just needed to hit the reset button. We felt extremely silly and got a good laugh out of it.”

Baleigh Margol | Avelyn and Slade, now 4 years old

“Avelyn was ready to come home after 12 weeks, and when the day came, I panicked. She needed to be on oxygen, and use a pulse oximeter and apnea monitor. A representative had come in weeks before to show me how to use the equipment, but between having one baby at home and one in the NICU, my mind was completely gone and I couldn’t remember how to use any of it. I begged the nurses and doctors to keep her. I totally lost it. I just knew I was going to blow her lungs up by misusing the oxygen, or that she’d stop breathing and I wouldn’t be able to get her to start again. Finally, one of our primary nurses came in from working in a different area, talked me off my ledge, and gave me the pep talk I needed to take our tiny baby home. Though the monitors were cumbersome (she could only be moved as far as her cords or tubes allowed), they ended up giving me incredible peace of mind. While Slade was still sleeping in our room so I could check on him throughout the night, I knew Avelyn was safe in her crib and that we’d be alerted the second her O2 dropped or her heart stopped. She was seven months old by the time she came off of everything and has been a strong-willed, sassy little delight ever since.”

Do you have a question you’d like addressed on The Parent Perspective? Email us today!

Every month, High Risk Hope would like to highlight ongoing topics, frustrations, or curiosities in your very unique journey with high-risk pregnancy and/or premature birth. Mothers, fathers, family, and friends will touch on their personal tools, tips, and techniques to many of the ongoing concerns you face after having a high-risk pregnancy or a premature infant. Above all, remember that there are no right or wrong answers, only other parents and families figuring it out along the way, just like you. Here is what they have to say this month.

Angie Lemont-Bresnahan, Addy (3) born at 28 weeks after 3 weeks of bed rest

“I will always be honest with her and answer any questions she has. I want her to know that it’s not a bad thing that she came early at 28 weeks when she was “supposed” to come at 40 weeks. She was so excited to meet us that she was born early. Even though we were scared we were very excited as well. There were a lot of people there to make sure she was taken care of and felt very loved. She was the most beautiful little girl I had ever seen and she still is.”

Jennifer Schultz, Leah (4) born at 34 weeks and Stephen (1) born at 33 weeks after 10 weeks of bed rest

“When Leah asks why her brother had so many cords and stickers, I tell her it was because he was special and a miracle. Just like she was. I tell her exactly what the machines are (example: CPAP) and what it does, we don’t give nicknames or baby talk. Having gone through this twice, we want her to become educated about her and Stephen’s scary but very common journey. Nothing was their fault and nothing was Mommy’s fault, we were chosen to go through that journey together, so we never take our time together for granted.”

Bailey Nicholas, Henry (5) and Nora (5) born at 34 weeks after 7 weeks of bed rest

“Henry and Nora are now old enough to understand that a hospital is a place for specialized care. I look at photos with them of their time in the NICU and they ask questions like ‘What is on my face?’ (referring to oxygen and feeding tubes). I explain to them that they were born early so they had to learn how to eat and breathe and that the amazing doctors and nurses at the hospital helped them. When they see photos of other babies or kids with oxygen or monitor leads, they say, ‘Hey, I had those when I was born!’, proclaiming it as a badge of honor.”

Jenn Millman, Madalyn (9) born after 12 weeks of bed rest

“When Madalyn asked why HRH is so special to me, I tell her about my pregnancy complications. She has seen numerous photos of me and a blood pressure cuff. At 28 weeks I went in for a standard checkup and my blood pressure was very high. The end result was she had IUGR (intrauterine growth restriction) and would not grow until delivered.  She was born at 4 lbs. 15 oz. and to this day she is still on the low end for weight, however, she follows her own curve and is a happy and healthy 9-year-old.”

Heather Barrow, Hill (10) born at 32 weeks after 8 weeks of bed rest

“Hill has always known that he was a preemie although the details that I’ve given him about our time in the hospital have evolved throughout the years. Now at 10 years old he knows know pretty much everything that went on during our three-month hospital stay. That knowledge helps Hill to be empathetic towards other families of preemies and tackle challenges in his life now knowing he has already overcome one of the best and biggest challenges when he was born.”

Do you have a question you’d like addressed on The Parent Perspective? Email us today!

by: Stacy Pizzo, HRH Mom

Full Name: Miles Pizzo
Birthdate: April 25, 2011
Gestational Age at Birth: 26 weeks, 2 days

In October 2007, after an uneventful pregnancy, Stacy and Paul welcomed their first child, Parker, born at 37 weeks. Their second pregnancy was a completely different story. Early on they knew things were not going to be easy. Stacy shares her story below.

During an ultrasound at nine weeks, it was determined our baby had three times the normal amount of nuchal fluid which typically indicates some sort of birth defect. I immediately underwent very strenuous testing to see if the baby had a chromosomal abnormality that would be life-threatening to my baby or myself. This initial issue eventually resolved itself. However, at this time it was also determined that I had a very short cervix. As a result, we were referred to an OB Oncologist to determine if any cancers were present. Again I underwent more intense testing. Luckily the diagnosis was not cancer. As the weeks progressed, the doctors closely monitored my cervical length. It was quickly determined that I was not a candidate for the cervical cerclage (also known as a cervical stitch) which would have helped delay delivery until near full-term. It was also determined that my placenta, which was initially low lying, had migrated toward my cervix. I was diagnosed with a complete placenta previa which can lead to numerous complications.

In February, I was put on bed rest at home. With a 3-year-old son and two dogs running around the house, this would not be an easy task. Between my family and my husband Paul, all care of our son and our home was taken out of my hands.

On April 22, 2011, I went to the hospital with complications and was immediately admitted. My cervix had shortened to 1.3mm, well below the magic number of 2.5mm. After a daunting consult with a team of doctors, I was told that I would spend the remaining three months of my pregnancy confined to a hospital bed. It was difficult to imagine being in the hospital for that long. On our first quiet evening in the hospital, Paul and I prayed for God to continue working miracles for us.

Three days after being admitted to the hospital, I had a small hemorrhage. Two hours later, the massive hemorrhage doctors feared, occurred. We were left with no option but to deliver our child in order to save both of our lives. At 5:25 a.m. on April 25, 2011, Miles Rush Pizzo made his early arrival into this world via emergency c-section at 26 weeks, 2 days gestation. He was immediately placed on a ventilator and rushed to the neonatal intensive care unit (NICU).

Paul compares the NICU to a casino. There were no windows so you never knew what time of day it was and there were constant noises and activity. Machines were beeping and buzzing non-stop, and doctors and nurses were quickly moving in all directions. Our first few visits were completely surreal. The thought of leaving our child in this bizarre place in the care of complete strangers was a source of great stress for us. Little did we know these complete strangers would quickly become our trusted friends, giving Miles the constant care he needed in order to survive. We had to lean on our faith and trust that God had a plan for our little boy. He gave him to us, He let him come into this world alive and we continued to pray He would be with Miles each day to help him grow strong.

I’m sure everyone has heard the saying “One step forward and two steps back”. This pretty much sums up life in the NICU. Just when it seems your child is making progress a new issue arises and the thought of taking your child home seems further away than ever. Every day is a new challenge. When a child is born as early as Miles, who by his gestational age is considered a micro preemie, all the things that apply to a full-term baby go out the window. Their skin is ultra-sensitive and they are not soothed by touch. Rocking or moving is often too much stimulation and causes them to burn precious calories. Paul and I basically had to go against all our instincts as parents in order to interact with this child. When he was first born we could only have what is referred to as “touch time” every six hours. This consisted of changing his diaper and taking his temperature then closing his isolette for another six hours. Seven days after his birth I was finally able to hold him. His weight had dropped to 2lbs 13oz and holding him was a challenge, requiring the assistance of three nurses to get it right. For the first month of Miles’s life, we could only hold him every other day and even that depended on whether he was having a good day or not. Our daily visits to the NICU gradually became a normal routine. I would go during the day and Paul would go in the evening so one of us was always with Miles and the other could be with our three-year-old son Parker. Miles’s journey in the NICU was long and he faced many setbacks including a battle with meningitis, being placed in hospital quarantine due to contracting a cold, retinopathy of prematurity (a potentially blinding eye disorder that primarily affects premature infants) and the challenge of a heart valve issue. After 87 long days, he came home to meet his big brother.

Miles is a very creative child. He loves working with clay, art projects building legos and keeping up with his big brother.  He has an amazing sense of humor and loves a good joke. Mostly what we love about Miles is his heart. He is an old soul always looking for one last hug and doing small random acts of kindness for all in his path. The Bible verse we used at his birth was 1 Samuel 1:27 “for this child I prayed and the Lord has granted me my petition which I asked of him.” We prayed through 87 days in NICU and this 26 weeker is a testimony of God’s goodness.

Stephanie Carraway remembers the emotions she felt when she was first placed on hospital bed rest. “We weren’t prepared. We didn’t have anything ready for the baby. We didn’t bring much to the hospital. I remember the nurse bringing in the HRH bag and it felt like there was someone there telling us it would be ok.”

She still hasn’t forgotten the day the nurses brought her a High Risk Hope Bed Rest Basket. She said she had been in denial about having to be on bed rest or even be at the hospital for the remainder of her pregnancy. She didn’t know anyone before that who had been diagnosed with preeclampsia and her and her husband were not sure what the outcome was going to be. “We were terrified and immediately thought the worst. I had been crying and just trying to figure out what was going on and the nurse brought the HRH bag with the calendar into my room. She pulled it out and sweetly suggested that we read the stories as they might help us on this unfamiliar journey. One by one, my husband and I read through the stories and it started to give us hope. Hope that even though I was only 26 weeks along at that time that there were so many other families that had gone through similar experiences and had wonderful outcomes. Hope that everything was going to be ok.”

As she read the calendar baby stories, she tried to hold back her tears. These other families had struggled with some of the same things they were going through. “My husband and I referred back to the calendar anytime there might have been a challenging day. It was like a comfort blanket. It was the extra boost of confidence we needed on hard days. I remember thinking every time a new test was scheduled I could look at these stories of hope and see the light”

If she could tell the families in the calendar one thing it would be, “Thank you! Thank you for being our guiding light when we were unsure where our journey was headed. Your stories inspired us to stay strong for our daughter and keep pushing. There were so many encouraging stories that helped us navigate through this challenging time in our lives. We are blessed to be a part of the High Risk Hope family!”

Stephanie was placed on hospital bed rest for 2 weeks after being diagnosed with preeclampsia and reverse umbilical blood flow. Her daughter, Madison Carraway, was born at 28 weeks and 3 days. Madison spent 53 days in the NICU at St. Joseph’s Women’s Hospital. Once her baby was born, she remembers searching for the HRH Milestone Cards. She would smile looking at all the milestones Madison would hit. “Each time she hit a milestone we would tape the cards on her cabinet in the room. Once again it brought hope that things would be ok.”

Would you like for your story to be an inspiration to others? Our 2020 HRH Baby Calendar contest opens June 1st, save the date to submit your HRH Baby/child.

written by Rebecca Julien, RN

We truly do care for your baby and want the best for them. We often take our work home with us, thinking about them on our days off or even calling the nurses who are working that day to check on them. To you, this may seem like it’s just our “job”, but it is so much more than that.

Your NICU stay is going to be a rollercoaster ride filled with ups and downs along with many emotions you didn’t even know you had. Some days will be harder than others but focus on the positives because I guarantee you they are there. Your baby can sense negative energy, just know we are always here for support.

Trust the process. Take it day by day and know everything we do is in the baby’s best interest. There is always a group of skilled medical professionals behind each and every decision in your baby’s plan of care. Giving your baby support and a hand (or finger) to hold is the best thing you can do for your baby.

Don’t focus on the monitors. One guaranteed way to drive yourself insane is focusing on all the numbers and every little noise it makes. Being educated and aware of the monitor and the meaning of the numbers is beneficial, but solely focusing on it alone is one of the worst things to do to yourself.

Don’t pretend to understand what the doctors or nurses are saying out of fear or embarrassment. The medical world is filled with abbreviations and long words that may be unfamiliar to most. Stay informed and speak up. We want you to understand and take part in your infant’s care.

Take care of yourself first. The best way to take care of your baby is to take care of yourself. Eat well, get some sleep, and spend time away from the NICU. Know there are always people to support you. Your NICU stay will be stressful and emotionally exhausting. There are many resources available to help deal with these emotions, so don’t be afraid to ask.

Graduation day is a celebration! There is no feeling like sending a NICU baby home with their family. It is a day filled with many emotions for all, as we have been there for the entire journey, hoping and praying alongside the family. We hope the families don’t forget us and hope we made a positive impact on their lives as much as their little miracle has impacted ours. We love receiving photos of our NICU graduates once they are home and are overjoyed when they come to visit the unit to show off how big and strong they are! It means a lot to us and reminds us how meaningful our job really is.

by Kari Adams, HRH Mom and Volunteer

Having another baby after a high risk pregnancy is a scary proposition. I outlined our feelings and all that went into our decision several months ago on a blog for High Risk Hope. I’m happy to report that Henry James Adams was born on January 2, 2019 after a complication-free pregnancy. Three months in and I still find it hard to believe that I had a fairly uneventful pregnancy . We had no bi-weekly doctors appointments, no bed rest, no long-term hospital stay. I made it to my scheduled c-section at 39 weeks and welcomed a healthy baby boy. He arrived at a perfectly average weight of 7 pounds, 1 ounce.

I kept waiting for “the other shoe to drop” as the saying goes. For something to go wrong. For my blood pressure to spike. It never did.

Hope had a different meaning for us this second pregnancy. During my first pregnancy, hope came among the complications of an unexpected high risk pregnancy. We had hope that our baby boy would be born healthy, I wouldn’t get any sicker, and that he would thrive despite his time in the NICU. This time we had hope that I would have a complication-free pregnancy and delivery and that our son wouldn’t have to be in the NICU.

I’m proud of myself, our boys, and our families for getting us through both completely different experiences. We have two of the sweetest boys to show for it. Our new family of four is proof that there is HOPE after a high risk pregnancy.

High Risk Hope was there for us throughout both pregnancies – luckily they only had to cheer us on the second time around. Five years after I was first introduced to High Risk Hope while I was on hospital bed rest, we actively volunteer as a family to give back to this important cause. I have served on the Give Day committee for multiple years, we attend and fundraise for the Tot Trot, and we’ve loved being a part of Jersey Mike’s Day of Giving at the Oldsmar location for three years in a row. We are so lucky to have an organization to support us and families like us.

To learn more about Kari’s story read her blog on Expecting a Second Child after a High Risk Pregnancy

Come join our team! High Risk Hope is currently hiring.

Development Manager
The Development Manager will be responsible for the coordination and oversight of High Risk Hope (HRH)’s fundraising strategy to ensure income stability and growth of the organization. This includes, but is not limited to: Donor Cultivation & Solicitation, Grant Research & Writing, Annual Giving, Corporate Sponsorship, and Special Events. The Development Manager will be involved with stewardship activities related to non-profit fundraising and relationship management, including working with a team to create and implement the fundraising and development strategy for High Risk Hope. This position works closely with the Executive Director to construct an overall development plan. Click here for the full job description.

Please forward a resume and cover letter denoting the position of interest to info@highriskhope.org. HRH is committed to building a culturally diverse staff and is an Equal Opportunity Employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, sex, national origin, age, or disability.