written by: Bailey Nicholas | Executive Director of High Risk Hope

When I heard about the thousands of poor passengers on the Diamond Princess cruise ship who were confined to their rooms with the looming threat of a serious adverse health complication, in this case COVID-19, I thought to myself, “I have an overwhelming empathy for them.” Then it dawned on me as to why. I too was confined to a small room for four weeks with major health threats to both me and my unborn twins when I was admitted on hospital bed rest with pregnancy complications back in 2014. And now, as my family and I completely self-isolate (I am pregnant with baby number three and have been told by my OB/GYN to avoid all contact with others—I can’t even go to the grocery store), I realize that many of the coping mechanisms I developed while on bed rest are helping me to cope with the new reality we find ourselves in today. Below are some of the ways bed rest taught me to deal with self-isolation, and I hope you will find them useful as well.

1. Find joy in routine

On bed rest and in self-isolation it helps to create a daily schedule. Then, you are less bored, feel less scattered, and have less time for your thoughts to start spiraling down a deep, dark rabbit hole. In the hospital, I so looked forward to each meal (the hospital food was good, especially the chocolate brownie). In self-isolation, my husband and I have been enjoying ice cream together after the kids go to bed (I am sensing that dessert is a joy-giving constant in my life). The kids look forward to our evening walks after dinner and we have found fun ways to explore our neighborhood like scootering through the alleys. Try to find joy in the simple things.

2. Look out the window

Even though hospital bed rest or a stay-at-home order might be keeping you mostly indoors, you will be amazed at what you observe by simply looking out the window. Who doesn’t love people watching? When I was in the hospital, my room overlooked the Tampa Bay Buccaneers’ training facility. I couldn’t see the players on the field, but a camera crew would set up on the roof to film practice, and they would put up a bright red umbrella to shield them from the sun. It was somehow satisfying to know that life continued on outside my hospital room. Likewise, in self-isolation, I find myself looking out the window of my home office. There are so many couples, families and roommates out walking the neighborhood right now. One day, every dog that passed by decided that our yard was the best one to pee in—it made me laugh! Life goes on, families continue to spend quality time together, kids laugh and play…and dogs do their business…despite the current public health crisis.

3. Connect

As social animals, we crave connection with others which is hard when you are confined to a hospital bed or to your home. When I was in the hospital, I loved having visitors. One of my good friends worked at the hospital and would visit me daily on her lunch break. Friends would bring me food from “the outside world”. Now, of course, we are to have no visitors, no playdates for the kids, complete physical separation from others when possible. Thank goodness for technology! Keep connecting with people however you can. FaceTime with grandparents, use Zoom (a new household name) for meetings. My kids’ teachers have been setting up Zoom meetings so all of the kids can see each other and feel more connected. I’ve seen quite a few Zoom happy hours as well. You can even send snail mail letters to loved ones and teach the kids about the good old days before cell phones. Get creative and keep connecting.

4. Give yourself grace

On bed rest and in self-isolation, there will be good times and hard times. Don’t be down on yourself for wanting to scream, or cry, or huddle in a corner in the fetal position. When I was on bed rest, it was devastating when my health deteriorated and they had to put an IV back in just in case I had to be taken to labor and delivery for the imminent birth of my twins. I had to force myself to take a deep breath and take life minute by minute. My twins were not born that day. They were not born for another three weeks. Likewise, in self-isolation, I find myself panicking when I think about this being our reality for weeks, if not months. But I take a deep breath, cry a little if I need to, then wake up the next day and start over with a new resolve. Take it one day at a time and give yourself grace when you feel overwhelmed. It IS overwhelming but collectively, we will get through this.

My hospital bed rest journey had a very happy ending. My twins were almost born at 28 weeks but instead were born at 34 weeks. They spent just two weeks in the NICU with minor complications and they are now healthy 5-year-olds (remotely) completing kindergarten this year. And we will have a happy ending when we all emerge from COVID-19 isolation. We will know that we are strong and can endure even the most stressful scenarios that are out of our control. We will have connected with our families more than ever. We will cherish in a new way the quality time we get to spend with friends and family in-person when this is all over. And it will be that much sweeter to eat my ice cream physically IN the ice cream shop!

Written by: Kate DeSantis

Panic. That’s the feeling that overcame me once I made the decision to homeschool. When will I have time to make this happen? What will our schedule look like? How can I keep my toddler busy while I teach my older kids? Now that I am almost 10 years into homeschooling, I can’t imagine a better choice for my family and me. But as I think about all of the families thrust into homeschooling without time to plan or prepare, I remember that overwhelming feeling of responsibility. Let me share a few things that would have brought me peace in the midst of panic.

1. You DO have the patience to homeschool.

Every time I tell someone I homeschool, they say, “I would never have the patience for that!” I understand that response because it is hard to stay patient some days. Today I was reading a book aloud to my kids and my daughter broke into the Frozen II soundtrack, my oldest yelled at her and my middle child fell out of his chair and started crying. All of this happened before I read an entire paragraph. My get-it-done personality wants to push forward through the lesson, and I feel the frustration begin to mount. I have to gently remind myself that character building is one of the classes I teach. It’s the one that never ends and seems to interrupt each and every lesson. And that’s not so different from your everyday life, is it? You stop cooking dinner to handle an argument. You put down the phone because someone started crying. You’re used to juggling your kids’ craziness along with other responsibilities. You’ve already got what it takes to do this and do this well.

2. You don’t have to know everything they are going to learn before you get started.

I remember reading everything in advance and preparing endlessly for lessons only to get questions from my kids that I didn’t anticipate. I learned quickly that some of the joy of homeschooling is learning together. I still get the chance to say every day, “I don’t know. Let’s look it up. Where do you think we could find the answer to that question?” Google is their first answer every time, but we also think about other ways to find the answers. It gives them critical thinking and research skills AND gets you off to hook! Bottom line – If you have helped with homework, you can homeschool effectively.

3. You will have time to work, too.

I can’t imagine how overwhelmed you must feel at the prospect of working from home and teaching. School days go until 3:00 and it can be tempting to think that your kids should be homeschooled for that many hours a day. They don’t. I promise. My kids are done with school by noon or 1 at the latest – True story. I work from home and choose to spend the first hour or so in the morning catching up then I work all afternoon. Do I get interrupted 437 times? Yes. Absolutely. Do they sit on my lap during conference calls and ask me to police disagreements even when I wave wildly at the phone to show them I can’t talk? Yes. Absolutely. But over time they have learned that work time is important. My oldest even decided to launch his own business online and he “works” while I do. You never know what you are teaching your kids by modeling a good work ethic.

4. The schedule will change as your family and work needs change.

I love schedules. I love giving everything it’s own little place on the calendar. And that can be a great thing until I start getting very frustrated at my kids for not following my carefully planned out day. Over time, I’ve learned to adapt. My advice to you? Try a schedule and if it doesn’t work, try something else. There’s no failure here, just trial and error. Every homeschooling family I know does it differently but it’s nice to have a rough place to start. Here’s the schedule that works for us now, with a 6, 8, and 11 year old. I often have block scheduling in my head that looks like this:

9-12:30 Homeschool

12:30-1 Lunch

1-2 Quiet Time (Everyone in their rooms with a book, puzzle or other quiet activity. I either work or spend some time reading.)

2-5 Free play/My work time

Here’s what the homeschooling time looks like:

• 9 AM – 9:30 Yoga or inspirational reading

We use Yoga Pretzels to get our minds focused on the day ahead. It’s fun and easy.

• 9:30-10 Read Aloud

If the schools have assigned specific chapter books, read those. If not, I would recommend the reading lists hereto find great books at your child’s level. The library app, Hoopla, integrates with the library system and is a great resource for ebooks.

• 10-11 Math

I work with my kids one at a time on math because my brain gets fried when they all ask questions at the same time. If you can handle that, then go for it. Usually my younger ones need to run around a bit by then so I start with my oldest and work my way down.

• 11-12 Language Arts

Same system for Language Arts – One kid at a time. My oldest can work independently so I
just check his work over during his turn.

• 12-12:30 Science/History

We alternate these because their read aloud is usually related to science or history. We love www.mysteryscience.com and Usborne Books for these subjects.

• 12:30 – 1 Lunch Time

My kids take turns cooking for each other and doing the dishes. This helps alleviate some of my workload and I use that time to get prepared for the work part of my day.

5. You are surrounded by an army of support.

You are going to mess up. You are going to lose it with your kids. I know I do. But you are not alone. We’re all in this together. I will be posting daily tips and going live every Monday and Friday at 1:30 to answer any questions you may have on www.facebook.com/homeschoolcrashcourse. I’ll also be posting on Instagram @homeschooling_crash_course. Feel free to send me any questions and I’ll do my best to help. You’ve got this!

written by: Bailey Nicholas, High Risk Hope Executive Director

High Risk Hope can honestly say that the growth we have experienced over the past three years would not have happened without Jersey Mike’s Subs. So how, you might ask, does eating a sandwich help preemies? Each March, Jersey Mike’s Subs locations throughout West Central Florida collect donations for HRH all month long. The campaign culminates in the “Day of Giving” on the last Wednesday of the month when all West Central Florida Jersey Mike’s Subs restaurants donate 100 percent of the day’s sales to HRH. 2020 marks the fourth year that HRH has been the benefitting charity for the Month of Giving, and we hope you will choose to visit one (or more!) of the 40 participating locations this March and especially on the Day of Giving on Wednesday, March 25^th, 2020 (mark your calendars!).

When HRH began partnering with Jersey Mike’s Subs in 2017, we operated three programs (NICU Napsacks, Bed Rest Baskets, and Books for Babies) in three central Florida hospitals (St. Joseph’s Women’s Hospital, Tampa General Hospital, and Sarasota Memorial Hospital). Thanks to the over $324,000 raised through the Month of Giving over the past three years, HRH now operates six programs (adding HRH Bundles, NICU Dinners, and Bereavement Boxes) in six central Florida hospitals (adding Johns Hopkins All Children’s Hospital, AdventHealth Tampa and Mease Countryside Hospital). That’s DOUBLE the families we were able to support before 2017. In 2020, we hope to raise over $100,000 in order to continue supporting 2,000+ families experiencing hospitalization due to high risk pregnancy and premature birth in our community.

The Day of Giving on March 25^th provides one of the easiest ways to give back to our community’s smallest newborns. You’ve gotta eat that day, so why not eat at Jersey Mike’s Subs. If you spend $8 on a sub, HRH receives ALL $8. It’s that simple! You will also get a chance to say hi to our HRH Family Ambassadors who will be in each store that day to greet customers, share their personal stories, and raise awareness about premature birth. If you are interested in becoming a Family Ambassador on the Day of Giving, email shannon@highriskhope.org.

We hope to see you at a Jersey Mike’s Subs this month. Bon Appetit!

Written by: Elizabeth and Genevieve Carrere

There is nothing quite like the excitement you feel when you find out that you are pregnant for the first time. My husband and I found out I was expecting in January of 2007, and very quickly discovered that the road ahead was going to be unlike anything we expected. At our first ultrasound, we learned that SURPRISE, we were pregnant with not one but two baby girls. The babies shared an amniotic sac and a placenta, which meant they were identical. To say we were shocked was an understatement, but mostly we were just eager to meet our two little girls that fall.

In May, our babies were diagnosed with a rare and deadly complication called Twin-Twin Transfusion Syndrome or TTTS. TTTS is a disease of the placenta, where blood flow is shared unevenly between the babies. This leads to blood and fluid overload for the recipient twin (often leading to heart failure), and for the donor twin, there is restricted blood flow (which can lead to anemia and death.) Left untreated, the mortality rate nears 100%. We were devastated. Thankfully, we lived in Tampa, and the world’s leading expert on the disease was practicing at Tampa General Hospital. Dr. Ruben Quintero was able to offer our babies a fighting chance as he performed fetoscopic surgery at 18 weeks gestation. Dr. Quintero was a godsend to us, both medically and personally. Our surgery was a success and I was discharged home. After almost 4 weeks of home bed rest, the babies were declared ‘cured’ of the TTTS. While we would still be closely monitored, there was a sense of relief and we focused on keeping me pregnant as long as possible.

Our joy was short-lived as our twin B, our donor baby, was found to be in heart failure at our 22-week ultrasound. We were quickly sent to see a fetal cardiologist and told that our donor’s right ventricle appeared to be ‘stunned’ and that there was very little blood flow through her pulmonary valve. This was likely caused by the TTTS and the correction of the uneven blood flow, but we were atypical because this was our donor baby that was affected. Usually, in TTTS, the recipient twin is the one who faces heart failure and/or cardiac abnormalities. Again we faced uncertainty, but our strong faith and unwavering support of our family and friends continued to sustain us.

After another 4 months of home bed rest, countless appointments and ultrasounds, and prayers, our girls were born on September 5th at 35 weeks. Twin A (Adelaide) weighed 4 lb 8 oz and went to the NICU as a feeder and grower. Twin B (Genevieve) weighed 3 lb 13 oz and was immediately transferred to the Pediatric Cardiac ICU. The next 6 weeks were some of the hardest of our lives. Genevieve was sicker than we imagined and was scheduled for open-heart surgery at just five-days-old. In an unexpected twist, she became too sick for the surgery and spent the next month incubated, sedated and paralyzed while we waited and watched. Her lungs were very sick, and her heart was diagnosed with hypoplastic right ventricle, RVOTO (right ventricular outflow tract obstruction), PFO (patent foramen ovale, a hole between the top two chambers of the heart), and other deformities.

Genevieve’s heart condition is not common and her doctors decided that if she could get her lungs healthy, then she could go home and grow before her heart surgery. So after 6 weeks in the PCICU, 6 weeks of back and forth between two hospitals and home, Genevieve and Adelaide were finally back together and home at last. We had both of our miracle girls with us and we were so grateful.

Genevieve was a frequent visitor at the cardiac clinic and each time the news got better. Her right ventricle began to grow, the thickened area under her pulmonary valve slowly began to thin out, the blood flow improved through the valve and her oxygen saturations began to rise. By the time she was one year old, the big open heart surgery seemed to be off the table. It was miraculous. Even our beloved cardiologist, Dr. Elsa Suh at St Joseph’s Children’s Hospital, said there was no medical explanation for her healing. Today, Genevieve is twelve years old and a happy and healthy sixth-grader. She continues her yearly cardiac follow-up, including stress tests, echos, EKGs and more. She is a stellar student and loves being active and helping others. Her heart is not perfect but it is perfect for her. She has no physical restrictions or complications from her defects and lives a full and healthy life.

That is a long background story to explain how we became a heart family, and why this month is special to us. February 7-14, 2020 is Congenital Heart Defect (CHD) Awareness Week. A CHD is when something is wrong with the child’s heart structure at birth. CHDs are the most common birth defects in the United States, affecting nearly 1 in 100 babies born each year. It was a great joy for our family when High Risk Hope’s NICU Napsacks began to be delivered to the PCICU at St Joseph’s Children’s Hospital. High Risk Hope was not yet formed when I was on bed rest and our twins were in the NICU and the PCICU twelve years ago. However, it was our experience in those places that have driven our family to serve others going through high risk pregnancies, bed rest, CHD diagnoses and ICU stays with their babies.

Serving on the board of HRH for the past nine years has allowed our family to give back and to have the platform to encourage others in their own journey. I have met and connected with so many amazing families through my work with HRH, and hopefully given them support and encouragement for their own battles. My husband and I were fortunate to have amazing families and friends who came alongside us, providing meals, childcare, and countless prayers during a difficult time. We were connected to other heart families who shared their stories and gave us HOPE. We had an amazing team of doctors and nurses at both TGH and St Joseph’s who provided us excellent care, medically and personally. We are grateful to God and so many incredible people who have helped us get to where we are today.

I asked our daughter Genevieve to share a little about her experience being a ‘cardiac kid’ and our involvement with High Risk Hope:

What do you know about your birth/ICU time?

“I know that my sister and I were born with TTTS. I was the smaller one out of the two. I was born with a small right ventricle and a hole in the top of my heart. A couple of days later I was going to have heart surgery to fix my heart, but then the doctors realized that I was too sick. My heart didn’t need to be fixed, and God wanted to keep me like this because this was how He planned it. Then I stayed in the ICU for a long time. I know that I was hooked up to a lot of machines to help with my breathing and all sorts of things.”

What does it mean to you to be a heart kid/patient?

“To be a heart patient means that I get to show God’s story in me. A lot of people say ‘wow, I can’t even see her scar,’ to my mom. Then she or I explain that I actually don’t have a scar at all. Every year I go to a checkup to see how my heart is doing. It is actually really fun to hear and see my heart working.”

Why are you/your family involved with HRH?

“My mom and some of her friends started High Risk Hope to help moms and families who need help or support during a time when their babies are in the NICU or the women on bed rest. HRH was not around when my sister and I were born. My siblings, Adelaide (my twin) and my brother Jack help deliver the Bed Rest Baskets and the NICU Napsacks and it is really fun. I hope when people see my picture on HRH pamphlets and books they are inspired by our story.  We also love to raise money for the HRH Tot Trot and bring our friends out to the event.”

Why is February a special month for you?

“February is a special month to me because it is American Heart Month and it is a great time to spread awareness about CHD (congenital heart diseases) in children and to share stories of inspiration! Plus, it’s Valentine’s Day and the perfect time to talk about love and helping others :)”

Written by: Marshella Pounds | Medical Mommy

It is human nature for us to want to be “normal” or have what is considered to be a “normal” experience when it comes to having children. What’s interesting about the idea of wanting to be “normal” or fit-in is that every individual has their own idea of what “normal” looks like.

I always say that we have not had a typical experience when it comes to parenthood and child-rearing. It isn’t typical for babies to be born early and live in the hospital for 191 days, although, premature birth is actually more common than you might think. Regardless, one of the primary lessons I learned and concepts I still lean into is the idea of having a “new normal”.

I will never forget the conversation I had with a friend from college who had the experience of being a NICU mom and she said to me “you will find your new normal”. She explained that our new normal would likely change fairly often given our circumstances, and she was completely right.

Right now, we are adjusting to our new normal, which is a place that I had not ever even thought about us being at. Emerson is walking. No, Emerson is running! Also, talking more and being off the ventilator during the day. I never truly allowed myself to think about this day coming mostly because I made it a point to live in the moment of whatever our new normal was at the time. Here’s how the stages of our new normals have gone for us:

1. Adjusting to life in the NICU, visiting Emerson each day while pumping exclusively
2. Going back to work while Emerson was in the NICU and still visiting him every day
3. Transferring Emerson to the PICU and adjusting to a different hospital and different staff
4. Transitioning Emerson home with a trach, g-tube, and ventilator after 6-months of being in the hospital

And now here we are at the stage where we are needing to baby-proof outlets and cabinet doors. I cannot explain how blessed I feel to be adjusting to this new normal. My heart smiles every time I see him running around playing or getting excited to see his favorite show. He has been able to have experiences that I never even imagined when he was in the hospital, like going on field trips with his daycare. We will even be taking him to his first live show to see Paw Patrol next weekend!

I guess I am saying all of this to say to my fellow NICU moms and dads, embrace your new normal and understand that it will change periodically. Continue to be totally present in the moment of whatever normal you are in. Time feels like it moves so slow when you’re a NICU family, but eventually, you look back and can’t believe you or your child has come so far. Stay encouraged. 💜

 

Read more from Marshella and stay updated with Emerson’s progress at Medicalmommyblog.com.  

Photo credit: Warped Vision