Postpartum preeclampsia was not a term Katie Rehberg had heard in a long time.

Most moms have heard of the dangerous pregnancy complication called preeclampsia which causes elevated blood pressure, protein in your urine, headaches, and potentially seizures, organ failure, and death. It is commonly said that the cure is to have your baby! Then everything is supposed to regulate back to normal. But postpartum preeclampsia can come out of the blue. I’d heard of it because of my occupation as a Physician Assistant but didn’t really know that much about it, ie. the cause, what puts you at risk, and what you can do to prevent it. However, neither does anyone else really. Which is the super scary part!

I had been home for about 2 days after my son Davis had been delivered late on a Thursday night. I was still in a fog on Monday but everything was going well. My husband, Blake, and I were hanging out on the couch watching a movie. I decided to check my blood pressure because I hadn’t checked it since I’d been home. Side note, I had prenatal hypertension during my pregnancy with my first son, Jack, and again with Davis. Overall I had felt fine since I had been home, slightly anxious (but what mom isn’t when coming home with a newborn) and something just didn’t feel right. However, no headaches, no blurry vision, no right upper abdomen pain…just hanging out on the couch after a long day of pumping and taking care of a newborn and a 5-year-old.

My blood pressure was 180/110 at 11 pm on Monday night.

So I’m a Physician Assistant (Dermatology) and, of course, realize that I’ve got a problem. But because of my profession, I know the long list of things that can potentially happen, too. My parents raced over to watch the boys while my husband and I headed to the emergency room at St. Joseph’s Hospital North. I had already contacted my OB and let her know what was going on. She said she would notify the women’s unit that I was on the way.

That night was a bit of a whirlwind, with an IV started and magnesium drip for 24 hours to prevent seizures and constant monitoring of my blood pressure. It didn’t go down and stay down like it should so I continued to have IV blood pressure medication. Thankfully the elevated pressure did not cause my liver enzymes to elevate, HELLP syndrome or any other complications.

I was so fortunate and had amazing support while I was in the hospital. With my blood pressure being taken every couple hours, I would become anxious just knowing it was almost time to take it. Between my amazing husband, parents, mother-in-law, and best friends they stayed positive and tried to distract me so I would relax. Finally, 6 days later my blood pressure was under control with two oral blood pressure medications taken multiple times a day, along with hydroxyzine which can be used for anxiety and sertraline for the actual anxiety.

Full Name: Maisyn and Madisyn Coccia
Birthdate: 02/02/2018
Gestational Age at Birth: 32 weeks
Hospital: Johns Hopkins All Children’s Hospital
Favorite Book or Toy: Penguins Can’t Fly

When my husband and I met, it was a type of love I can’t explain. We married and decided we wanted to expand our family. In August of 2017, our lives were changed forever when we found out we were pregnant with mono/mono twin girls. Mono/Mono twins are extremely rare. They share the same sac and placenta, which causes extreme concern for doctors and patients. There is a greater risk of cords tangling and the babies not equally sharing nutrients. For the next six months, we were in constant worry for our baby girls.

That October, I was at work and experienced an extremely high heart rate and blood pressure. I was sent to the ER, and I remember crying the entire way, not knowing what was happening. The doctors determined that the babies were not in danger. They placed me on modified bed rest for the remainder of my pregnancy. I was overwhelmed with emotions.

We began seeing a high-risk doctor and learned that I would need to be inpatient in the hospital beginning at 24-28 weeks pregnant. If all continued well, we would be admitted at 27 weeks. Our baby girls were little rock stars and at each bi-weekly check up they continued to do great.

On January 1st, 2018, my husband and I left our 8 and 5-year-old daughters at home with their grandparents as we drove the hour from our home to St. Petersburg to begin our inpatient stay. My amazing husband stayed with me every night in the hospital on a pull-out chair for 33 days of inpatient monitoring. I was extremely nervous during this stay. I only saw my older girls a handful of times, because at any moment I feared I’d be rushed to labor and delivery. Some days I spent the entire day hooked up to monitors for the protection of our babies. We ended up making it to our scheduled C-section date on February 2, 2018. Mono/mono twins are required to be delivered at 32 weeks regardless. I remember walking myself into the operating room not believing we had made it to this day. Twenty minutes later, at 12:29 pm we heard our first cry from Maisyn Olivia Coccia (Baby A, 4.14lbs) and twenty seconds after that, from Madisyn Grace Coccia (Baby B, 4.12lbs). Watching not 1 but 5 nurses, doctors, and neonatologists around each of our girls was one of the scariest moments. Minutes later they were whisked away to the neonatal intensive care unit (NICU).

Nine hours after delivery, I officially met our twin girls for the first time. Seeing both girls hooked up to monitors and intubated was something you cannot prepare for. Our journey in the NICU was stressful with its ups and downs. I sat in the hospital bed three floors away in tears, with a feeling of hopelessness. We spent the entire next day in the NICU just staring and praying. There are terms we now know that we never thought we would need to know–ventilators, CPAP, PICC lines, bradycardia events, apnea events, etc. Each milestone was amazing, from getting to hold them, wearing a shirt, meeting their big sisters, getting their PICC lines removed, to breathing on their own. It is an incredible feeling that rolls over your body when your tiny little miracles make progress.

Our girls were in separate rooms for the first three weeks they were in the NICU. I could feel that Maisyn wasn’t doing as well as Madisyn and needed her sister to make progress. They moved them to the twin room and both girls made tremendous progress. At day 32, Madisyn Grace was able to come home. This was another hurdle we had to overcome, bringing one baby home without the other. Since it was flu season no siblings under five were allowed to visit the NICU. The rule prevented Madisyn from visiting Maisyn, which in turn prevented me from seeing Maisyn as often as I liked. Maisyn truly needed her sister there to continue progressing. After a few days of feeling terrible about not seeing Maisyn as often, my husband called the hospital and within two hours, we were walking through the NICU doors with Madisyn to visit her sister. They had been apart for eight days. When we arrived, Maisyn’s heart rate was very high and as we placed Madisyn in bed with her, it immediately slowed down as she turned towards Madisyn and calmed down. It was one of the most memorable moments of our NICU experience. Five days later, Maisyn Olivia came home! Madisyn spent 32 days in the NICU and Maisyn spent 45 days in the NICU.

Since having our family home together, our girls have been thriving and doing wonderfully. We are truly blessed to have our girls home as we begin the next chapter.

Adams Family

HRH Child: Perry James Adams
Parents: James and Jessica
Birthdate: March 1st, 2012 at 4:20pm
Gestational Age at Birth: 34 weeks

Jessica Adams did not plan to give birth early, but at 34 weeks she was going to have a c-section to give birth to her daughter. Jessica suffered from a pregnancy complication called Preeclampsia. Almost 6 years old now (Happy March Birthday!), Perry is a thriving, smart, fun, and independent little lady. Her parents say she is “petite, but mighty. When this girl puts her mind to something she makes it happen.”

When we asked Jessica about her support during this difficult time, she told us her husband, James, was her rock! “He totally stepped up and was there no matter what I needed.” But what is it like on the other side? To be the one to hold it all together at home when your journey to parenthood takes a turn you did not expect. We asked James a few questions in the hope to empower other family members that find themselves in a similar situation.

Do you have any advice you would like to pass along to other partners whose spouse is on bed rest or has a baby in the NICU?
If there’s one thing that I could pass along to others, it would be for them to be ready and more than willing to get involved. Also, be conscious of the role you play when it comes to not only the physical things but just as much to the emotional support. The partner needs to recognize the most natural experience for mankind (pregnancy) can also be the most stressful. But only if you let it. Lastly, let them know to see the big picture, relish in the experience and put momma and baby first.

What would you say surprised you most about your personal experience?
The most surprising thing that I recall is the overall physical toll this process can have on a woman. Bed rest is stressful but the anticipation keeps the excitement in the room. The recovery post-delivery was eye-opening to me. I believe living through this as a couple brought us closer. If there’s a NICU experience, there’s a great toll of pressure placed on moms to perform motherly duties in this environment. Again, I would go back to the statement that the partner needs to be willing and able to jump in and assist and put the mother’s needs first.

As a spouse, did you feel personally benefited from any of the items that were delivered in your partner’s HRH Bed Rest Basket and/or NICU Napsack?
I remember that just receiving a gift during this time brought joy to us. It was nice to be thought of and to know that there were strangers who cared about making sure our family got started on the right track. Lastly, it brought us closer to the experience but also reminds us that it takes people to give back to the next lucky person(s) so that they too can have the same great experience.

 

Jessica remembers how sweet it was to watch her husband step up as a new dad. He hadn’t spent much time with newborns and especially not a teeny tiny little 4-pound baby. He spent time with the NICU nurses and doctors to learn about Perry’s schedule, what to expect and asked all the right questions. The bond between Perry and him instantly grew strong and I was so proud of the amazing daddy that I knew he was! He would take sweet pictures and videos of her and bring them to me so I could see her. Then a LONG 36 hours after delivering her, he was able to take me to see her. I remember it was so late, close to 11:30 pm when he took me to the NICU. Seeing Perry and holding her for the first time was nothing short of amazing! It’s a moment that was so special and I will cherish forever! (good things are worth the wait!)

Wood-Mkandawire Family
Full Name: Remi Wood-Mkandawire
Nickname: Remster
Birthdate: July 1, 2016
Gestational Age at Birth: 34 Weeks
Favorite Book or Toy: Rubber Duckier Toy

Following a visit home to London (which I deliberated for months about taking while pregnant), I arrived home feeling jet lagged and decided to reschedule my 20-week ultrasound for 4 days until after the weekend. During the ultrasound, I was informed that I was in preterm labor and was sent directly to St. Joseph’s Women’s Hospital for admission. My 2-year-old daughter Noémie, whom I had never left even for 15 minutes, was screaming in the corridor of my OBGYN’s office because “Mummy had gone into a room without her” (despite being with my visiting mother-in-law) to speak with the doctor about my results. The awful news, backed by the screams of my daughter, will stay with me forever!

My husband collected my daughter while I went alone to St. Joseph’s Women’s Hospital, where I sat completely confused and upset. This is when I first met the amazing Dr. Karlter who introduced me to the unknown world of pre term labor. He informed me that my cervix was at just 0.9 (compared to an average healthy 4-4.5). I was in complete shock, but after some discussion, he agreed to send me home on strict bedrest with a re-scan 5 days later. No lifting, running, walking, exercise or movement at all. Basically, all the things I had been doing over the weekend, which I would not have done had I not rescheduled my appointment! I was so angry and upset with myself, despite the doctors telling me it wasn’t caused by something I did.

Bedrest at home with my 2-year-old was difficult and frustrating for her, but it gave me time to fly my mother out to care for her over the next 13 weeks. Nothing could prepare me, however, for the mental stress of the coming weeks.

On admission to St Joseph’s, I felt so alone, my world had blown apart. I felt so much sadness for my unborn baby and unbelievably devastated for my daughter. I also punished myself for flying long haul and overdoing it in previous weeks and worst of all feeling I had let my healthy baby down.

In the morning, one of my amazing nurses brought me a High Risk Hope (HRH) goody bag. It was so uplifting. I read all the stories of other women who had similar experiences which really helped change my mindset. It was a complete emotional rollercoaster and setbacks were tough, but my nurses and doctors were amazing. I stayed positive, kept myself occupied with a daily routine and ticked off the days on my calendar.

Missing my daughter’s milestones was so hard and feeling distant from my husband whom could only visit a couple of times a week was tough, but my nurses and techs were amazing and kept me going.

There were days when the contractions kicked in and filled me with dread, then the panic and fear that swept over me when I realized 28 weeks was a realistic birth gestation expectation based on my cervix length and the shocking reality of the statistics. However, after a few near misses, the doctors let me go home on bed rest at 33 weeks. 5 days later at 34 weeks, Remi Gabriel Wood-Mkandawire was born on July 1st, 2016 weighing 6lbs.

Remi was admitted to the neonatal intensive care unit (NICU) and required assistance with his breathing and jaundice. He did great, came off C-Pap after 2 days, and we took him home 4 days later.

I cannot thank all the staff at St. Joseph’s enough. The fetal medicine doctors were fantastic, I am eternally grateful to you. A huge thank you to the OBGYN’s, the nurses, NICU nurses, techs, cleaning girls, and canteen staff, all of which made an impact on our journey.

The HRH bag is so much more than a bag of goodies. It was knowledge, which helped me process information that frightened me. It was hope through the stories of other women who had experienced preterm labor. It was comforting to see the pictures of other babies that were happy and healthy against the odds and inspiring to assist me to remain positive and structured. HRH knew what I needed before I did. The supply bag reminded me of Mary Poppin’s magical bag of everything “Practically perfect in every way”. Regularly if I needed something I would find myself wondering if “the bag has it” and sure enough it would!! It gave me a smile every time. I thank HRH from the bottom of my heart for all your amazing work, the small difference you’re making is so HUGE!

Courtney Robinson is an anchor for 10News This Evening on Tampa Bay’s CBS station. For the past few years she’s worked with High Risk Hope to bring awareness to its mission and support the various HRH events. She’s thrilled to join the board to continue to be an advocate for all of the work HRH does to help families experiencing high risk pregnancies. Courtney and her husband, Brad, have a two-year-old daughter, Harper.

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Sullivan Family
Full Name: Sophia Sullivan
Nickname: Pumpkin
Birthdate: October 31, 2016
Gestational Age at Birth: 30 weeks and 2 days
Favorite Book or Toy: Kick Piano

We tried for two years to become pregnant. We were elated when we finally found out that we were pregnant. It was a roller coaster pregnancy. At 15 weeks we learned that Sophia had Trisomy 21 (Down Syndrome). Although we were shocked by the news it was not going to deter us, we were finally having a baby. At 26 weeks we went to our perinatologist for her fetal echocardiogram. We waited for over an hour to see the doctor to learn that he had been making arrangements for me to be admitted to St. Joseph’s Women’s Hospital. It was at this time I was placed on bed rest due to reverse cord flow. Sophia was not receiving the nutrients she needed. The doctor informed us that with this condition, the majority of people deliver within a week. If this happened, Sophia would only have an 80% chance of survival. I was frantic. A few years prior, my best friend had a very similar condition. Her baby was born at 26 weeks and lived only 96 days. I was terrified this was happening to us.

I was monitored 3 times a day, some days were continual, and each day when we were wheeled down to ultrasound, we prayed we would stay pregnant one more day. We made it to 30 weeks and 2 days and delivered our beautiful Sophia Grace on Halloween. She’s our pumpkin princess. She was a tiny thing, weighing only 2.3 pounds, but a very strong little girl. Sophia
spent the first two and a half months of her life in the NICU (Neonatal Intensive Care Unit) surrounded by amazing doctors and nurses. Today she is a 1-year-old beauty who is full of life and personality. It was a long, stressful journey but I wouldn’t change the outcome for anything. Sophia is our life.

I knew of High Risk Hope through my best friend. We had attended the Tot Trot the previous year in honor of her daughter, Stella. While we were in the hospital the care bags meant the world to me. As much as we were at the hospital, each item came in handy. It was amazing to know we had this group who we could lean on.

My husband and I found out we were expecting at the time I was scheduled for a hysterectomy. We were in shock for a very long time. After 12 years of not conceiving and numerous health issues, Mr. Johani Emanuel Canales was sent from above, determined in every way he would come into this world. Despite my health issues and concerns from my doctors, I made the decision to continue with the blessing and if something happened to the pregnancy then that was God’s plan and I was ok with it.

My pregnancy was going well, with weekly ultrasounds making sure the baby was ok. One of the main focuses was the baby’s heart due to an autoimmune disease I have called Lupus. Everything was going well until my “normal” checkup at the high risk specialist when I was 35 weeks. Something was wrong with the baby’s heart. I was told I needed to go to St. Joseph’s Women’s Hospital for an ultrasound and echocardiogram to the baby’s heart. During the office visit, I had three separate doctors check the echocardiogram. It was confirmed I needed to deliver at their hospital because it was a level 3 NICU and the baby would need the best cardiologist in town because they did not know what was causing his heart enlargement. We lived over an hour away from St. Joseph’s and this hospital was not where I was planning on having the baby. I found out my OBGYN also didn’t have privileges at St. Joseph’s. So besides the heartache of knowing something was wrong with my miracle baby boy, I was now in a new place with new doctors.

Due to all the stress I was under I went into labor early. I arrived at the hospital at 10 pm on Sunday, July 17th, 2016. My son was born at 12:17 am July 18th via cesarean section. Immediately after his birth, he was taken from us and sent to the Neonatal Intensive Care Unit (NICU), where he was diagnosed with Pulmonary Hypertension. This moment was one of the worst experiences of my life. I could not comprehend how such a beautiful moment could turn into so much emotional pain. How can everything go so perfect at the beginning and just change so fast? My faith remained strong and I knew this little angel came with a purpose. Baby Johani had been a miracle baby since day one.

I developed preeclampsia and Bells Palsy as a side effect of all the stress I was under. The left side of my face was completely paralyzed. My body was going crazy, and this was what the doctors had feared most.

When I walked into the NICU to visit my baby and I saw that High Risk Hope bag, my heart filled with so many emotions. When I went through the bag and saw the blanket, I cried because it was so beautiful. I saw the calendar and read every story, it gave me so much hope.

One year later, I have the most energetic happy baby boy. Johani recently celebrated his first birthday. I like to say he has been my therapy and has helped me in my recovery. Regarding his cardiac issues, he continues to be followed by a cardiologist in Tampa. His heart is now normal size and his right valve has closed beautifully. He is my Miracle Baby Boy.

Shannon Oras graduated from the University of Central Florida with a Bachelors of Science in Hospitality Management. She has experience in Retail Management and Visual Merchandising. Her passion for women and families has brought her to the non profit sector.

Shannon has spent her entire career in the retail industry and is eager to put her experiences to work here at High Risk Hope in a role that will allow her to help others.

 

Kerri Kibbey has recently moved back to Tampa from Miami. She has been a High Risk Hope volunteer since 2011 and has served for 6 years as a High Risk Hope Board Member.

Kerri graduated from Texas A&M University-Kingsville with a Bachelors in Fashion and Interior Design. She has been involved with the grass roots planning of our High Risk Hope Tot Trot and many of the daily operations at High Risk Hope since 2011.

She is excited to be back in Tampa and looks forward to expanding the out reach and services at High Risk Hope.