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 [email protected]. 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.

Get to know our 2019 HRH Board Members. Each of our Board Members loves their community and not only has a deep connection to our mission but has roots here in the Tampa Bay Area. Learn about their favorite part of the city and make sure to say hi when you see them around town.

Bennett Barrow
“Water has always been my favorite thing I love about Tampa whether it is just going over a bridge or enjoying the day on a boat. Tampa is also a true ethnic microcosm of America, which means that the variety of food choices like Cuban, Italian and Spanish food are plentiful. I also love the fact that Tampa is home of Central Command and MacDill Air Force Base. I still can’t get over seeing F-16’s fly over the Bay all the time.  Lastly, I love the [number] of events that occur in Tampa whether it be Bucs football or Lightning hockey games, concerts at the Amphitheater or once per year events like the Gasparilla Music Festival.”

Heather Barrow 
“My favorite thing about Tampa is the Riverwalk. I love having a peaceful and beautiful space on the water to exercise every morning.”

Susie Bray
“Tampa is my hometown and my homegirl! We recently moved back from Orange County, California, where we have lived since 2005. There is a lot to love about the weather and lifestyle of Cali living, and I get asked a lot about how the transition of moving has been for our family. I am happy to report that it has been truly seamless because there is a general sense of HOME that we feel while living here. I have been genuinely impressed with the renaissance of growth and culture that has happened here in the past several years. We are never bored! From our world-class beaches and sports teams to a booming arts scene and strong philanthropic outreaches, I feel fulfilled with all that is around and available to us. We have also found the schools to be excellent. And, you can’t beat the Gasparilla season…a surefire way to beat the post-Holiday blues. Florida is a melting pot, but there is a pride and southern sensibility here that feels unique. I can’t wait to see how Tampa continues to evolve while holding tightly to its rich history.”

Elizabeth Carrere
“Tampa is a wonderful place to live, and watching it grow and thrive makes me proud! I was born and raised right here, went away for school, and made my way back to start my own family. We have great weather, beautiful beaches, and most importantly, the nicest people! I love watching my children becoming involved in our community and am especially proud that that includes volunteering and raising money for High Risk Hope. Two of our three were preemies and they all love going and participating in the annual HRH Tot Trot. It’s events like these that really bring our Tampa community together!”

Kate DeSantis
“Sarasota is filled with so much beauty and culture and fun. I love taking in a Siesta Key sunset, exploring Selby Gardens with my kids and listening to live music downtown. People are relaxed and friendly, and I’m so thankful to live in one of the most beautiful places in the country!”

Paul Dolcimascolo
“My favorite thing about Tampa is seeing all of my friends who don’t live here, but visit…leave BLOWN AWAY at everything we have to offer. The massive transformation Tampa as gone through in the last 10-15 years is remarkable. Development of the urban core, the Riverwalk, Armature Works, Water Street, professional sports all around, a best in class beach community over the bridge, unbelievable foodie scene….and to think what downtown will look like when Water Street is complete.  Overall, Tampa is a city that PLAYS BIG AND FEELS SMALL. And that’s just the way we like it.”

Tracie Domino
“Tampa is always welcoming! Since so few people are from here, it’s easy to get involved and everyone is incredibly accepting of newcomers who want to be part of everything this amazing city has to offer.”

Betsy Graham
“I have been fortunate to call Tampa home for the past 23 years, and, in that time, I have grown to love the people, the place, and the possibilities. The people here are friendly, welcoming, and always ready and willing to come together to make our community a better place to live. Hurricanes and summer heat and humidity aside, Tampa is a great place to raise a family with natural physical beauty and plenty of indoor and outdoor recreational and cultural opportunities. With the growth and development going on in Tampa right now, the possibilities are endless, and the future looks bright!”

Courtney Robinson
“We have the most incredible friends and so do our children. It really makes all the difference.  Tampa is a big city, but it also has that wonderful small town vibe. I love that we can go to big events like a Lightning Game or Gasparilla and despite the crowds, we’ll end up running into friends.”

Lauren Companioni Strahan, DMD
“What DON’T I LOVE ABOUT TAMPA!? Well, this is my home city, born and raised here so of course, I love it!  I was away at school for 12 years and couldn’t wait to get back.  I’m Cuban and Sicilian so the culture here is perfect for me.  But what’s always drawn me back is the tranquility of being near the water.  Whether it’s Old Tampa Bay or out by the beaches – there’s just something about the water that makes me feel at home.  The most important piece of what I love about Tampa though is MY FAMILY.  I’m blessed to have my mom and dad, sister, sister-in-law, nieces and nephews all within a few minutes of me. I could go on and on if you let me! I LOVE TAMPA!”

Alfonso Vargas, MD
“My family moved to the Tampa Bay Area from Colombia when I was just 2 years old. We lived here for 11 years before moving back to Colombia. It wasn’t until almost 30 years later that I moved back to Tampa with my wife and three boys. I had always held Tampa near and dear to my heart and remembered what a great city it was. For the last seven years, my family has made Tampa our home. We love the variety of year-round activities for the kids, the great weather and world-class beaches. We love our professional sports teams, especially the Tampa Bay Lightning! We are lucky to have a wide variety of amazing restaurants featuring anything from Thai to Cuban to Italian and it seems like new spots are constantly popping up.  We have great schools and universities and amazing world-class hospitals. We are lucky to have a never-ending stream of concerts, theater, and other events. Tampa truly is a beautiful melting pot that never ceases to amaze and excite us. We truly love our city and are incredibly proud to call it home!”

by Jeff Fabian, High Risk Hope Dad

Your new son or daughter can, and likely will, live a happy, rewarding, and normal life.  Keep that in the front of your mind.  Dwell on it.  Do not let everything going on around you distract you from that point or get you down because your family will need your confidence and strength. You should know that your parenting experience may not be typical.  It will probably be more difficult physically, emotionally, and financially.  But it will also be more rewarding.  Your child’s milestones will mean more.  And you will swell with pride seeing the perseverance of baby and mom.

I can say all of this from experience.

One spring afternoon, my wife and I found our joyous expectation and confidence replaced with worry and uncertainty.  Jennifer was admitted to the hospital during what should have been a routine obstetrician appointment.  Our son, John, was delivered a few days later right at 33 weeks as Jennifer entered organ failure.

We had questions but no answers.

No one could tell us when, or even if, John would be able to breathe or eat on his own.  No one could say for sure whether John would have mental or physical impairments or how they would be treated if he did.  We were experienced parents, but we had no idea what to expect.  We had no idea whether John would grow up to live the life he was supposed to live or how to help him get there.  It is a low place.

One thing that helped, was hearing from coworkers who had premature children that grew up to live normal adult lives.  It provided hope that is now turning into a reality for John even though it has not been easy.

John’s early life has been challenging and has included numerous visits to four different medical specialists, an orthotist, physical therapy, an ER visit, and repeated unscheduled “sick” visits to the pediatrician.  There have been countless late nights and desperate moments.  But we hung in there with John, and Jennifer in particular, devoted her life to making John’s life better.

Now at eighteen months, John is thriving.  He is hitting all his developmental milestones, and he is a happy child whose heart is filled with love for his family.  It has not been an easy road, but I could not possibly be more proud of John and Jennifer.  I am certain that if you stay positive and stay tough, your family can do it too.

6 Tips for the NICU Dad

1. Run Public Relations. It is natural that many family members and friends will have questions, reach out with concern, and ask to come by the hospital to show support.  Their support is critical, but it takes effort to manage.  To help take some stress off mom, take the initiative in reaching out to family and friends to let them know how baby and mom are doing so that mom doesn’t feel obligated to reach out herself.  If family and friends want to visit, coordinate the visits so that everyone doesn’t come by at once and so that mom has personal time when she needs it to relax and bond with your new child.
2. Encourage Mom. Let mom know every day that you are proud of her and that she is doing a wonderful job.  Mom will be experiencing a range and depth of emotions that dads may not be able to fully understand.  Your words can help instill confidence and comfort to carry everyone through a difficult time.
3. Participate in the caring for your NICU baby. Even while still in the NICU, help with baths, feedings, and changing diapers. Ask the nurses and doctors questions and learn what you can.  It will not only help take some stress off mom, but it will give her comfort to know that you are in this together.
4. Meals. You may be in the NICU for a while.  Bring in a variety of mom’s favorite foods from different restaurants even if you have to travel out of the way.  It can provide comfort and a respite from the monotony of hospital food.
5. Make sure the home is ready for the baby. Since the baby came early, you may not have been able to finish the nursery or put together all those high chairs and rockers you got from the baby shower.  Take the initiative to get some of those projects done so that mom doesn’t have to worry that your home is ready for the baby.
6. Whittle down that “To Do” list. Mom may focus her time and effort on your NICU baby for the foreseeable future.  You can help her keep that focus by getting to some of the things on that lingering to-do list, like hanging that shelf, calling the plumber to fix that leak, or getting her car serviced.

by Emily Carbone, High Risk Hope Mom

Being discharged from the NICU is daunting for any parent, especially if the NICU stay has been lengthy and your child is coming home with medical equipment. Your new normal is intimidating, to say the least.

My water broke when I was 20 weeks pregnant and we spent the next three and a half weeks on hospital bed rest. My son, Theo, was born at 23 weeks, 5 days and stayed in the NICU for 113 days. The NICU became our second home and naturally, I leaned on the neonatologists, nurses, respiratory technicians and social workers for information and peace of mind. We were extremely lucky with Theo’s outcomes but still had issues we would need to deal with following discharge including chronic lung disease, Rickets, and retinopathy of prematurity (ROP). Theo came home on oxygen, a pulse oximeter and an apnea monitor…enter our new normal.

Home
Bringing home a preemie is scary. I cried leaving the hospital for the last time because I didn’t want to leave the safety of our NICU world. I was scared I wouldn’t be able to care for my son adequately or use the medical equipment correctly. My fear lessened as I became more comfortable using the medical equipment, asking questions and trying to understand what was going on at ALL* of our doctors’ appointments. But it’s overwhelming, and it’s okay to admit that. Your first few months at home will include doctors’ appointments, appointments with home health aides, social workers, early intervention specialists and a lot of adjusting.

Living Life
As Theo grew stronger and the medical equipment was no longer needed – best day ever not having to deal with sticking a Pulse Ox probe on your baby’s tiny toe – we learned about resources that would carry Theo through his toddler and preschool years, and onto elementary school.

Theo went to a medical daycare and a special educational program through our public school system for preschool. He received therapies, one-on-one education, and medical attention when it was needed from nurses at school and daycare. As time went on and he grew out of his medical issues, we were discharged from our endocrinologist, our ophthalmologist, our GI doctor and finally our pulmonologist. Moving to elementary school was challenging but we found a great charter school that can give Theo the education and therapies he needs. The transition to kindergarten was difficult for us because the public school system has limited resources as far as individualized education for special needs children. We utilized contacts and resources and were able to find his current school.

Today, Theo is thriving! He is a happy and sweet 7-year-old in first grade. He has a great sense of humor and adores his family. He loves monsters and french fries. He is also autistic and developmentally delayed. He is a challenge and we happily accept his challenges because they make him, him. We deal with behavioral problems, delays in speech and other milestones. These issues may be present his entire life, but he’s worth it. I’m proud of him defeating every odd thrown at him and fighting for all he’s accomplished.

Being a preemie parent changes you. Watching your baby go through horrible pain, uncertainty and struggle changes you in a way I can’t describe. It’s taken me years to really deal with the emotional aftermath of our experience, and every day it’s right at the surface. What we went through is seared in my brain and affects every aspect of my life. Until recently, I’ve felt very overwhelmed by our experience on bed rest and with Theo. I’m getting better at letting other people help me and enjoy the life we have worked so hard for, and I would go through it a thousand more times if it meant we got Theo.

Tips for Life After Discharge

• Utilize your Social Worker. Have them make all of your post-discharge appointments. It makes life so much easier when you’re not calling to schedule.
• Teach your family. Teach other family members how to use any medical equipment your child might have. The more people who are comfortable with the equipment, the better.
• Ask questions. Takes notes, ask questions, discuss the next steps with all of your doctors and therapists.
• Enjoy your baby! You and your baby have made it so far. Don’t forget to enjoy the time you have with him or her.
• Keep adjusting. In my experience, life with a preemie has never gotten easier, just different. Theo’s care is still a full-time job and one that you really have to stay on top of. Use the resources you have, ask other preemie parents about their experiences and keep advocating for your child.
• Get help for yourself. It’s suggested preemie parents are more likely to develop post-traumatic stress disorder (PTSD) following birth. Talk to someone and seek help for yourself. It’s so incredibly important.
• Use your resources. Every contact, social worker, child life specialist, and fellow preemie parent may have knowledge of a therapy, treatment, etc you may be struggling to find.

*Preemies have numerous doctors’ appointments following discharge and for years afterward. We followed up with six doctors monthly for over a year, not including therapy.

by Amanda Williamson, HRH Mom

My husband and I initially thought that we wouldn’t be able to conceive, so when we found out I was pregnant, we were shocked and excited all at once. At my first doctor’s appointment, when they told us we were having identical twins, we were feeling twice as shocked. Little did we know, our journey to bring our twin girls into this world was going to bring us many of moments of shock and surprise.

At 11 weeks, I experienced two subchorionic hematoma hemorrhages while traveling out of state. At 16 weeks, our high-risk OBGYN doctor said it looked like we were heading for a diagnosis of Twin to Twin Transfusion Syndrome (TTTS) due to our babies having two different levels of fluid (7 [Audrey] and 2 [Riley] ). TTTS is when twins share unequal amounts of the placenta’s blood supply due to shared blood vessels, resulting in the twins growing at different rates. We didn’t yet qualify for a TTTS diagnosis because to qualify for a Stage 1 TTTS diagnosis, there has to be an imbalance of amniotic fluid, with a small amount (<2cm) around the donor twin and a large amount around the recipient twin (>8cm). At this point, one of the twins qualified and the other did not. The only thing we could do was wait.

On July 21st, at 17 weeks gestation, we were diagnosed with Stage 2 TTTS. We now qualified for fetal laser ablation surgery. Due to previously having bleeding with the subchorionic hematomas, as well as having an anterior placenta, and not yet being past 18 weeks gestation, my case was difficult. Our high-risk OBGYN recommended a fetal surgeon in Pasadena, CA. He was the only surgeon who agreed to do a consult for our surgery, the only way we could save the lives of our girls. On July 25th, 2016, we met with him for our consultation. Baby A (Audrey) had 8.4 cm of fluid and Baby B (Riley) had 0 cm of fluid. He wanted to see if we could hold out a few more days until they were 18 weeks gestation because the outcome would be much better. We would wait as long as possible, while continuously being monitored by the Los Angeles Fetal Surgery center, so the girls could grow and become stronger. On July 27th, our doctor informed us that Audrey and Riley’s TTTS had progressed to Stage 3. At this point, the bladder in Baby B (Riley) and the imbalance of blood flow had started to affect the heart function in Baby A (Audrey). The TTTS laser ablation surgery was scheduled for the following day. During this surgery, the doctor used a tiny laser fiber and the laser energy was used to stop the blood flow between the twins shared blood vessels thus separating the twins blood flow, separating the placenta, and allowing each twin to develop independently. The surgery was a success! On August 2nd, 2016, during a follow-up visit, we were told both babies had fluid in normal ranges and Riley also had a visible bladder.

Over the next few weeks, I was placed on modified home bedrest. On Sept. 30th, 2016, I woke up to leaking and some mild back pain. I called my OBGYN and they sent me directly to labor and delivery to be assessed. I took my time waking up my husband and getting ready to leave the house because I had no idea that I was in pre-term labor. Once I was assessed, the OBGYN on call told me I was in pre-term labor and had Preterm Premature Rupture of Membranes (PPROM). PPROM means that prior to 37 weeks, the membrane sacs holding the twins ruptured and the amniotic fluid was leaking. I was only 27 +3 weeks. I was in preterm labor. They were going to try to stop the labor, but I would need to stay in the hospital until I delivered my twins. I was also diagnosed with gestational diabetes.

There were so many feelings when I heard all this news. First, I was scared for my daughters’ lives. Next, I was sad. I would miss my home, my husband and sweet cockapoo, Teddy, who would snuggle next to my pregnant belly every night. And lastly, I felt pure embarrassment. I had no idea that I was in pre-term labor and was mortified that I missed “the signs”.

For the next 6 weeks, I was on hospital bed rest. Falling asleep in an unfamiliar bed, alone, in an unfamiliar place was hard. Getting needles stuck in me multiple times a day was hard, but every time I felt something was hard, I reminded myself that it was all a small sacrifice to be able to hold my beautiful, healthy girls one day.

During my time on hospital bedrest, God placed people in my life that left a permanent memory on my heart. I was blessed with the most incredible nurses, social workers and nutritional staff that I could have ever imagined. On a daily basis, these women made me laugh and smile. On the days when I felt like I was doing nothing but laying in a bed, they reminded me that I was nurturing, growing and loving my daughters. And then there was one evening when I told my nurse that I felt bad for using so many Styrofoam cups and wish I had a huge cup I could just keep refilling and reusing. She told me that they just received a delivery of High Risk Hope Bedrest Baskets. She asked if I had ever heard of High Risk Hope. When I said I had not, she told me that HRH was a non-profit organization, founded by a mom who was on hospital bedrest during her pregnancy. She created the organization to support other mothers on hospital bedrest. She proceeded to bring me an HRH Bed Rest Basket, which included a large insulated cup!

I had an incredible amount of support from friends, family, and co-workers, while on hospital bedrest. People would always ask me, “What do you need? What do you want?” and I never knew how to answer. “What did I need?” I had no idea at the moment. However, HRH knew what I needed. The HRH Bedrest Basket gave me everything I needed without being able to verbalize what I needed. And the piece of that bag that I needed the most? The 2016 HRH Baby Calendar. Daily, I would read the stories of the calendar babies and look at those pictures. The pictures of the calendar babies paired with the stories gave me so much hope.

I spent 42 days on hospital bedrest. I went into premature labor at 33 weeks and had an emergency C-section due to the girls’ heart rates dropping rapidly during preparation for delivery. Both girls were born unresponsive, struggling to breathe, requiring ventilation. Audrey was taken off the ventilator within a few hours, but Riley stayed on for a few days. The girls spent 36 days in the NICU where Audrey (Baby A) was jaundiced, required light therapy and we learned that she was born with a small hole in her heart. Riley (Baby B) had a harder time breathing on her own and experienced bradycardia.

The hardest part of my entire pregnancy was not being able to hold them immediately. I fought so hard for them and waited so long to meet them, all I wanted was to hold them. I remember this feeling crushed my heart and at the same time, I found so much peace knowing I was not alone in this stinging pain I was experiencing. I knew every mother of the HRH Calendar babies had experienced the same stinging pain that I was experiencing.

It was not the pregnancy I always wanted. It was not the delivery I always imagined. And it certainly was not the first few moments and weeks together that I had always envisioned. But, oh my gosh, these little girls are way more incredible that I could have ever dreamed!

by Oneida Diaz-Cadavid

When I learned I was pregnant, I was overcome with anxiety as memories of my first pregnancy came to mind. My first pregnancy came with its challenges, but in the end, I delivered a healthy baby boy at 36 weeks.

As a nurse anesthetist my assignments vary in stress level. Determined not to repeat history, on Monday morning I went directly to my supervisor’s office to inform him of the news. I began doing my part, eating healthy, drinking plenty of water and trying to take it easy. It wasn’t long before history began to repeat itself. By week 7, I began bleeding profusely so we rushed to the emergency room and were told the baby’s heartbeat was great and the bleeding came from a subchorionic hemorrhage. I spent the rest of my week at home off of my feet, taking it easy. At week 14, we decided to go to a private facility to have a gender reveal ultrasound. As soon as I got a glimpse, I screamed with joy, “it’s a boy, it’s a boy”. As the days went on, I started to become overly exhausted as if I were in my 3rd trimester. I knew something just didn’t feel quite right and went and spoke to my manager. I requested to change my schedule to shorter hours and he approved it effective immediately. Monday of my 16th week, only 3 days after speaking to my manager, I was sitting in the operating room when I felt fluid leak out. I immediately went to see my doctor. He performed an exam and the fluid came back inconclusive for amniotic fluid, which is not unusual so early in a pregnancy. He then performed an ultrasound and the look on his face said it all. My heart sank and I could feel the knot in my throat form. He looked at me and confirmed my fluid levels were low. I was scheduled to see maternal fetal medicine in two days already because of my prior pregnancy, so I was instructed to pass along the information and in the meantime, I was to stay home off of my feet once again.

The next several days were full of emotions, confusion, and frankly, just shock. I was sitting around with my water broken at 16 weeks without any signs of imminent labor. I had never heard of such a thing. Everything became a reality the day we met with maternal fetal medicine. After several exams, we were directed to her office. It felt like a scene from a movie because, honestly, how many times do you actually go sit in the doctor’s personal office and not in an exam room? We spent a good part of the hour discussing all of the possibilities, none of which were positive. The biggest point she elaborated on was the risk of the baby and I both passing away due to me developing a systemic infection. My husband looked at me with desperation waiting for me to say something. I dug deep trying to find words. I looked at her and said, “Have you seen miracles happen because I have. I’ve witnessed things that cannot be explained in a textbook.” She replied, “Yes, but very few times.” I stood up signaling to my husband and as we walked out, and I said, “This is going to be a miracle because this baby is going to be just fine.” The car ride home was difficult. The air was thick to breathe. As a medical professional, my husband depends on me to carry us through these moments. I reached for his hand and said, “Everything is going to be fine”. As scared as I was I truly believed that.

Four days passed, and we once again found ourselves in the emergency room. This time we were sent home with the news all the doctors had been preparing us for. The baby’s heartbeat was low, and the active bleeding indicated I was experiencing a miscarriage. We were sent home. I messaged my physician and was told if the pain became intense to head back to the hospital, but in the meantime plan to see him in his office first thing in the morning. The following morning my parents and my husband all joined me to the doctor’s office. He performed another ultrasound and told us the baby’s heartbeat was normal, but the fluid levels were almost nonexistent. It was that moment that he took the time to be very honest and clear but in the most tender way. He again explained the probability of survival was not on our side. He offered to induce labor and end this emotional rollercoaster, which I immediately refused and stated, “If God wants to take my baby it’s his job to end this pregnancy, not mine.” He continued on to gently introduce things we needed to start thinking about. Do we want to see and hold our child if he passes away? What are our beliefs for funeral arrangements if the baby passes away? He introduced things my husband and I had never discussed. I left his office feeling pretty empty inside. Over several days, my husband and I made some tough decisions if our baby didn’t make it. We went through hundreds of names to find a name that would describe him perfectly, regardless of the outcome. We decided on Dominic- belonging to God. It was perfect.

As each day passed, our hope continued to increase that we would make it to “viability”. Viability is defined as 23-24 weeks gestation. At 19 weeks, we met with a second maternal fetal specialist from a different group. Again, multiple exams were done, and it was time for the dreaded face-to-face discussion. This time the conversation went a little different. Despite the lack of fluid, our baby looked developmentally perfect. We learned that the biggest risk other than death was the baby not developing lungs because lung development starts at week 16 and requires amniotic fluid. He ended the conversation saying, “I can’t tell you this is going to be easy, but it’s not impossible. I have seen one other patient rupture this early and make it to 34 weeks and deliver a healthy baby.” That was all I needed to hear. We discussed the plan to be admitted to a high-risk obstetrical hospital in Tampa at week 23 and hope I remained pregnant without complications until week 34, at which time they would schedule to deliver me via C-section, as the risk for infection increases dramatically at that time. I walked out with such a high for the first time in weeks.

In the coming weeks, we started getting things ready for me being an hour away from home. My mother and mother-in-law were now living in our home full-time helping us with our 18-month-old. As things were looking on the up and up, they suddenly came crashing down once again. At week 21, I was rushed to the hospital with suspected placental abruption, a risk of not having amniotic fluid. On complete bed rest, things once again started to subside. The baby remained safe. After several days of being hospitalized and noticing that even a simple walk to the bathroom five feet away caused the bleeding the start up again, it was decided that I would be on complete bed rest and would remain hospitalized until week 23, at which point I would be transferred to the high-risk obstetrical hospital.

Week 23 had finally arrived. VIABILITY. The word I never ever want to hear again. I had felt like my baby meant nothing to many providers because we had not reached that mark until this week. It was a bittersweet trip to the new hospital. I knew my baby now had a chance, but I was now one hour away from home, which meant a lot fewer visits and a lot less time with my 18-month-old. I was given my first shot of steroids in case the baby decided to arrive early in hopes of helping lung health for the baby. Our ultrasound revealed the baby weighed 508 grams, just 8 grams over the “requirement” to resuscitate a baby. This was a huge milestone to us because now our baby truly had a chance at life.

As the weeks went by, so did the milestones. Along with all the good came all the stressors of maintaining a home an hour away from a hospital bed. Financially things started getting more difficult as I had been out of work now for months and some of the initial medical bills started coming in. I had an amazing support system at work that donated vacation time to help with my income loss. Being so far away, the number of visitors also decreased. I remained with a core group of visitors each week, for which I will forever be grateful. I looked forward to the non-hospital meals my visitors brought me. I spent my hours in front of my iPad on Facetime watching my son play at home. My mom would bring my son a couple of times a week for a few hours as he didn’t tolerate much longer than that cooped up in my room. My husband traveled to work 20 minutes from my hospital every morning, another 45 minutes home to spend some time with our son only to turn back around and drive another hour so he could spend the night with me at the hospital. This took its toll on everyone involved. After six weeks of total confinement in my room, I was finally given wheelchair privileges to go outside. My first time outside I was blown away to hear all of the birds chirping and the leaves blowing. My mom pointed out that those birds and leaves are always there we just never pay any attention to them. It was like my senses were heightened. Every several weeks I had a scheduled ultrasound and each time the fluid levels were negligible, and the baby’s growth continued to decline on the charts. I continued leaking fluid throughout the entire pregnancy with intermittent episodes of bleeding.

At week 30, I began having contractions and was transferred to labor and delivery where I received a rescue dose of steroids for baby’s lungs and a large dose of magnesium, which is used to protect baby’s brain in case of imminent delivery. I have never felt so awful in my life. The magnesium takes everything out of you. You feel like you have the worst flu of your life in addition to having your face in a fire pit. My entire body felt like fire and I was immobile in the bed. Things once again settled down and I was transferred back to my room. The next several days seemed to repeat themselves as I had intermittent contractions and bleeding. At the end of week 31, I was once again transferred to labor and delivery and received my last rescue dose of steroids and another round of the miserable magnesium. Despite the contractions’ intensity improving they never stopped this time, but I was told if I was in true labor the magnesium would not have stopped the labor. I wasn’t completely convinced. As they moved me back to my room, I told my husband something wasn’t right.

The next morning, officially 32 weeks, an ultrasound was done, and we were told the baby was now only measuring 3% on the growth charts. I had a record amount of amniotic fluid, still low but enough to catch an image of our baby’s face for the first time ever. It was the best birthday present my husband could have imagined at the time. He went off to work but before leaving I told him, something isn’t right so be on standby as I continued to have contractions. By 8pm, I was being pushed down to the operating room, as it was confirmed I was in labor. As ready as I was for this rollercoaster to come to an end and for me to be able to see my baby, it was the first time that the reality of my baby not surviving really hit me. It was in that moment that I realized I had been in denial for so many months. I had never felt so scared. My husband entered the room and I couldn’t even smile. I knew that in the next few minutes our life would change forever. The room was covered in hospital staff reporting off to each other about my situation. You could hear everyone’s gasps each time someone heard I had been ruptured for 16 weeks. I wasn’t the only one in the room full of fear. You could see the fear on the staff’s faces. The incision was made, and my husband squeezed my hand as we both prepared for the moment of truth. After some pulling and tugging, we suddenly heard Dominic’s screams. I could finally take a breath and the tears poured out. I turned my head to watch all the staff surround Dominic. I caught a glimpse my baby. He was quite discolored which I knew meant his lungs were not working very well just as they had warned us. They brought him over literally for a quick second, allowed me to touch him before rushing off with him to the NICU. I sent my husband with strict instructions to not leave his side and not to worry about me that I would be ok.

As they finished closing me up, I felt so powerless being so far away from my baby and not knowing what was going on. At one point, I received a video of the baby on my phone and I could see that he was pink and doing ok. Before going back to my room, I was wheeled to the NICU to catch another glimpse of Dominic from my stretcher. At this point, he was receiving some respiratory support from a C-Pap mask, but my little guy looked great otherwise. By morning the phone rang, and we were informed that Dominic had to be placed on a ventilator because he was struggling to breathe. We rushed down to his room to see him. It was my first time really being able to see him. He was so tiny, just 3lbs 8oz. He was covered in medical equipment. As a medical professional, it’s hard to shut it off and just be a parent. I looked at all the monitors and interpreted all of the data. I knew even on the ventilator he was struggling. Because Dominic’s lungs were so underdeveloped, he had to have a special ventilator referred to as an oscillator. This machine makes a loud rattling sound as it delivers breaths to the baby, loud enough that the baby had to wear earmuffs to protect his hearing. The next several days were touch and go. One of Dominic’s lungs ruptured, and they had to insert a chest tube. Dominic’s lungs were so weak they had to use a special gas called nitric oxide to help his oxygen levels increase. One of his neonatologists came in to talk to us and explain the situation. I heard all of the medical talk, but what I saw was something different. I had seen that look before. It was the same look the doctor had when he told me I had ruptured at 16 weeks. It was the look of tenderness and sadness. He held my hands ever so gently as he explained the gravity of the situation. As he walked away, my husband looked at me for words of hope. Again, I had to jump into action, “Honey he’s going to be ok. God didn’t let us get this far for nothing.” As the days passed, Dominic started to improve. I was able to hold him for the very first time nine days after he was born with all of his tubes and IVs still attached to him. After 11 days he was finally able to breathe on his own off of the ventilator. The next seven weeks consisted of weaning Dominic off of oxygen slowly, multiple blood transfusions, and getting him to suck from a bottle nipple. At 40 weeks gestational age, Dominic was still having trouble taking milk from a bottle, so we opted to have a feeding tube placed. At the same time, a special cast was placed around Dominic’s hips and legs because he had been diagnosed with hip dysplasia from the lack of fluid during the pregnancy. Finally, at 41 weeks gestational age, nine weeks after he was born, we were able to take Dominic home on low dose oxygen and a feeding tube for meals. Once home, the transition was very difficult, as I was required back to work 2 days after bringing Dominic home. My sister, a registered nurse, and my mother were able to care for him while I was at work.

Dominic is currently six months old, off oxygen, and doing amazing. His feeding tube was out in less than a month and he is already learning to eat purees. His hip cast has been switched to a removable brace, which he is expected to use until age two while he sleeps. This week he has become a pro at rolling over. He is always full of smiles and rarely ever cries. Dominic Andres Cadavid is our miracle baby.

by Dr. Osarumen Nicole Doghor reproductive psychiatrist at Texas Children’s Hospital

In my work as a reproductive psychiatrist at Texas Children’s Hospital, I have noticed families struggle with emotion regulation, interpersonal relationships and self-identity while experiencing reproductive issues.

Specifically, I would say the top five experiences that families exhibit are grief, anxiety and depression, relational strain, insecurity and shame and, finally, hopefulness.

It can be difficult for others to understand the immense sense of sadness and loss for women experiencing infertility. First, there is the primary loss of not having a child, as well as the secondary losses of finances for treatment, strain in relationships and lowered self-esteem. To discuss the primary loss, one needs to understand infertility as “blank mourning”. In essence, this is a term we use to describe the mourning for a wished-for experience; making it difficult to cope as there is no specific person or object to mourn. However, women going through infertility describe the same symptoms of bereavement one would have after experiencing a loss. For instance, many women describe an intense sense of longing when seeing other pregnant women or children, in the same way, someone who has lost a loved one would feel when reminded of their loved one.

Grief is a normal experience that women struggling with reproductive issues may encounter. However, it is important to note that women struggling with reproductive issues may suffer from more severe psychiatric symptoms, including anxiety or depression. Depression can set in when a woman starts engaging in isolation, excessive tearfulness, thoughts of not wanting to live, stops participating in previously enjoyed activities or feels shame and guilt. Some women begin struggling with insomnia, fatigue, or poor focus and concentration as symptoms of either depression or anxiety. Women can become excessively worried and anxious during different phases of infertility treatment as well.

I have also noticed that relationships can be strained during reproductive struggles and at times therapy can be helpful to discuss the grief that both partners are experiencing. Couples therapy provides an avenue for partners to be open about feelings of disappointment and pain in a nonjudgmental environment with coaching on how to communicate this distress to one another. Oftentimes people notice their relationship with friends and family feel different. They become tired of answering questions about their fertility status. They may find it difficult to attend birthday parties of small children and baby showers. This could lead to distancing oneself from certain friends and family members, limiting their social circle. These social challenges may be linked to underlying insecurity and shame. Women experiencing infertility may find it hard to see themselves in the way society defines womanhood. I have heard some women describe feeling “defective.”

Lastly, I have seen tremendous hopefulness. I have found women and couples struggling with reproductive issues to be some of the most determined people, with characteristics of strength and perseverance. I think balancing the hope is very difficult because women, their physicians, and partners tend to focus on the hope of eventually having a child. What I have found remarkable in my experience, are the individuals who can find a balanced view of hope in whatever circumstance they find themselves knowing they will survive and work towards building a meaningful life.