High Risk Hope

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Sullivan Family

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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.

Canales Family

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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.

High Risk Hope has a new Executive Director!

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By Heather Barrow

Serving as both the Executive Director and Board Chair since founding High Risk Hope (HRH) in 2011, it has been my dream to find the perfect person to take over as Executive Director. HRH has grown tremendously during the past six and a half years, from serving only one hospital and a few hundred patients to serving six hospitals (with several new ones in the works) and 2,500 patients every year. We have raised over $1.25 million and helped 6,500 families in crisis thanks to the support of our loyal donors.

One of the families HRH supported in 2014 is the Nicholas Family. Bailey Nicholas was pregnant with twins when she was admitted to St. Joseph’s Women’s Hospital and placed on img_0286hospital bedrest for preeclampsia, where she received a HRH Bed Rest Basket. After four weeks in the hospital, a spike in blood pressure caused her to have Henry and Nora six weeks early. The babies spent several weeks in the neonatal intensive care unit, where they each received a HRH NICU Napsack. Once their entire family was healthy and home, Bailey began volunteering at HRH, delivering bags to patients and helping with various fundraising initiatives.

I was so impressed with Bailey’s fundraising, nonprofit leadership skills and passion for HRH, that I asked her to join our team in 2015 to oversee fundraising and special events. She was a stay at home mom with her twins at the time, and not in the market for a job. Thankfully, Bailey accepted because it was her dream to work for the organization that helped her family during their crisis.

Bailey has exceeded my expectations ever since. She is hard hbworking, creative, intelligent,
driven, honest, caring and truly has our HRH families’ best interests at heart. She is willing to try anything (Belly Flop For Babies) to elevate HRH’s presence in the community, She sets high but attainable goals for herself, the HRH team, and ensures we exceed them. Bailey has never met a stranger and sees every interaction with another person as a chance to tell them about the wonderful things we are doing at HRH. She has developed strong relationships with HRH hospital partners, with several of them inviting her to serve on hospital committees.

All of these traits combined convinced me that I had finally found the person I could trust with my third baby, HRH. Earlier this year I spoke with Bailey about what I hoped would be her future as the Executive Director of HRH. She didn’t hesitate in accepting the challenge and has worked hard every day during our transition to prove that she is exactly the leader I hoped she would be in this role.

In 2011, never in my wildest dreams did I foresee HRH growing to the organization it is today. Fast-forward to 2017 and I can dream much bigger because I now know what the High Risk Hope family is capable of. Bailey’s leadership of our A-team will enable HRH to reach thousands more families in the future. As Chairman of the HRH Board, I can’t wait to see what they will accomplish now that Bailey will wear my purple shoes. img_3738
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Shannon Oras is High Risk Hope’s new Development Coordinator

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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.

 

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Kerri Kibbey is High Risk Hope’s new Director of Special Events, Marketing and Public Relations

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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.

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Sasha Shahnasarian is High Risk Hope’s new Program Coordinator

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Sasha Shahnasarian recently relocated to Tampa from Chicago. She graduated from Purdue University in 2010 with a BS in Youth, Adult, and Family Services. While living in Chicago, she worked for a large corporation, where her experience included administrative tasks, organization, and direct client interaction.  Her role as a Childcare Specialist allowed her to work with parents and provide resources pertaining to any parenting topic or concern.  Sasha has assisted with resources for parenting and new mom classes, lactation consultations, adoption, autism support, and help to locate family providers and daycare centers.

Sasha is excited to start working with High Risk Hope and connect with the many volunteers who help support HRH.

 

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Tracie Domino joins High Risk Hope’s Board of Directors

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Tracie Domino is the Founder + Creative Director of Tracie Domino Events, a boutique wedding planning company based in Tampa, Florida.

Tracie’s stylish expertise and relatable sophistication has made her a trusted consultant to business leaders, professional athletes and high society since 2002.  Tracie designs and produces fun, memorable events for her clients in destinations across the US and in the Caribbean.

She is a Certified Special Events Professional and was named one of the “25 Young Special Events Pros to Watch” for 2016 by Special Events Magazine.

Tracie is the nine-time chair of the Outback Bowl Gridiron Gala, one of the most highly regarded business/social events in the Tampa Bay area.  She is also a member of The Junior League of Tampa’s leadership council, the national board of directors of the Florida State University Alumni Association, the board of directors of the Outback Bowl, and the board of directors of the Miss Tampa Scholarship Pageant, a preliminary in the Miss America Organization.  Tracie is also a member of Leadership Tampa Alumni and provides pro-bono services to Southeastern Guide Dogs.

Tracie is an honors graduate of Florida State University and received her Master’s degree from the University of South Florida.

Tracie and her better half, Brian Burns, live in Tierra Verde with their two “career changed” guide dogs Barry and Stella.

She is a huge fan of the NFL and rates her status as back-to-back champion of her annual football pool as one of her proudest achievements. Tracie has been a strong HRH supporter prior to joining the Board of Directors and has been an incredible asset to this community. We are thrilled to welcome her into this new role within the HRH family.

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Ignoring my early signs of preeclampsia could have been deadly

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By Bailey Nicholas

Remember the horrific seizure Cybil on Downton Abbey experienced during childbirth that took her life? Unfortunately, this was not an over-dramatized scene made for TV audiences, nor was it a historical situation that has been eradicated by modern medicine. It is a scene that occurs far too often around the world to this day. It nearly happened to me.

Cybil’s seizure was the result of eclampsia, a condition preceded by preeclampsia which, when left unidentified and untreated, claims more lives of mothers and infants than any other pregnancy complication. Had I not been aware of the symptoms of preeclampsia and voiced my concern repeatedly to my doctors, my twins and I may not be here today. Ignoring my early signs of preeclampsia could have been deadly for all three of us.

May is Preeclampsia awareness month, and too few pregnant women are aware of how common and frankly, deadly, preeclampsia can be. The condition affects between 5 and 8 percent of pregnancies, claiming the lives of more than 75,000 mothers and 500,000 infants annually. Preeclampsia is not isolated to developing countries or to moms with preexisting conditions. Nearly 30% of moms on hospital bed rest right here in Tampa are hospitalized with preeclampsia and other hypertensive disorders. I personally have three close friends diagnosed with preeclampsia who were the epitome of health before and during their pregnancy. Preeclampsia can happen to anyone.

As explained by the Preeclampsia Foundation, preeclampsia is characterized by high blood pressure and protein in the urine. Symptoms include headaches, vision changes, excessive swelling and upper abdominal pain. Moms with early signs of preeclampsia are closely monitored, often in the hospital, because preeclampsia can rapidly progress to life-threatening conditions called eclampsia and HELLP syndrome. These conditions cause widespread organ failure and seizures. The only cure for preeclampsia is delivery, therefore, many babies are delivered prematurely in order to save both mom and baby. Be aware, too, that preeclampsia can occur postpartum.

IMG_0220I was diagnosed with severe preeclampsia while pregnant with my twins. During the last two weeks of my pregnancy, I nervously watched my blood pressure increase twofold, despite being on medication for preterm labor that coincidentally was also blood pressure medication. I gained 13 pounds of water weight in as many days. At my regularly scheduled perinatal appointment, a growth ultrasound showed that my daughter had not grown in two weeks, a result of high blood pressure. The doctor took my blood pressure, which measured 160/98 (my normal blood pressure is 100/60). He looked at me and said, “Whoa! What do you think would happen if we took you off the massive amounts of blood pressure medication you are currently taking?” My eyes welled up as I looked at him with relief that a doctor agreed with what I knew had been happening for two weeks. I had preeclampsia and the babies needed to come immediately.

I had an emergency c-section at 34 weeks 6 days gestation and my babies were rushed to NICU while I was kept on a 24-hour continuous drip of magnesium sulfate to prevent seizures. During this 24 hours, I was not allowed to get out of my hospital bed and therefore unable to visit my babies in NICU. IMG_2593My heroic husband stayed by the twins’ bedside those first harrowing hours as my son struggled to breathe with his underdeveloped lungs and my daughter’s 4-pound body worked hard to lower bilirubin levels under a phototherapy light. And we are the lucky ones. My preeclampsia did not cause seizures and my twins’ made it longer in utero than many babies of moms with preeclampsia. Today, everyone is healthy.

If you take away just two things from my story, let it be this: Educate and Advocate. Educate yourself about the symptoms of preeclampsia and advocate for yourself if you suspect you have early signs of the condition. Many of the symptoms of preeclampsia are common pregnancy symptoms, but I urge anyone experiencing these to check their blood pressure. Most pharmacies have a free public blood pressure cuff. You will not regret making an extra trip to CVS but you will regret ignoring early signs of preeclampsia.IMG_2197

What would your kids do with $25?

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By Heather Barrow

I saw an article on Today.com this weekend. It asks parents, ‘If you handed your child a $20 bill with the opportunity to buy anything, or donate the money instead, what do you think he or she would do?’

Our family eats, sleeps and breathes philanthropy through our work at High Risk Hope. My children also live a blessed life and have difficulties differentiating wants versus needs.

The article had me wondering what my kids would do with the money. The timing for this challenge is perfect, as Give Day Tampa Bay is Tuesday, May 3rd, and the minimum donation is $25.
I put the $25 offer on the table and waited. My 9-year-old daughter Claire (who is currently still in the red for a riding helmet debt caused by her adopted puppy Tucker) immediately said she would donate the money. The only problem was she IMG_7601couldn’t decide between High Risk Hope and The Humane Society of Tampa Bay. Both are worthy causes but it’s ‘really hard’ to pick between babies and animals. I feel her pain. There is a good chance she will pick the puppies, which is OK with me (at least publicly).

My son Hill, who just celebrated his 7th birthday, declared he would give the $25 plus all of his birthday money to High Risk Hope. My heart be still. I knew it! I am raising an angel. Until he asked how many leaves he could pick off The Giving Tree for giving his $25 donation plus $200 in birthday money.

You see, The HRH Giving Tree is a way we are trying to teach our philanthropists, both young and old, about giving. Every one of the leaves on givingtreeThe Giving Tree correlates to a fantastic prize. Toys, $10- $50 Columbia gift cards, Kendra Scott Jewelry, a Pottery Barn Kids rocking horse and gift certificates from various Hyde Park Village stores. Claire and Hill have seen me loading these prizes for weeks. If someone donates $25 to HRH on Give Day Tampa Bay, they can pick a leaf off of the HRH Giving Tree by the fountain in Hyde Park. The idea, just like in the book The Giving Tree, is to give away all of our leaves throughout the day, and end up with only a stump. Every grown-up donor will receive a shopping pass full of discounts to Hyde Park Village stores and restaurants. We are going to roll out the purple carpet for every one of our HRH donors on Give Day, no matter how much they give.

It may not be Hill’s only reason for donating $25, but it is his only reason for forking over 100% of his birthday money. HydeParkDiscountsThe same is probably true for many adults who may donate $25 to HRH on May 3rd, only to receive the discount shopping pass. The truth is, it doesn’t matter why someone makes their first donation to HRH or any charity, especially children. What matters is that they are introduced to philanthropy at a young age by their parents. The reward will come as they grow older and remember the day their parents empowered them with the ability to make a difference in the life of another. Even if it was because they wanted a prize from HRH’s Giving Tree. Try the challenge in your home. You can’t afford not to invest $25 in your child’s, and this community’s, future. What would your kids do with $25?

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