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

 

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

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

 

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

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

 

 

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

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

 

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

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

 

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

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

 

 

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

by: Stacy Pizzo, HRH Mom

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

written by Rebecca Julien, RN

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

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

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

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

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

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

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

by Kari Adams, HRH Mom and Volunteer

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

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

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

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

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

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

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

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

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

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!