High Risk Hope welcomes Peyton as our new Program Coordinator. She is currently in her third year at the University of Tampa double majoring in Marketing and Accounting. Peyton also serves as the Fitness and Recreation Center Student Coordinator. During the summers, she is a mentor for the Gold Star Adventures program, through which she travels abroad with teens who have lost a military, first responder, or intelligence community parent in the line of duty. Peyton has a passion for helping others and giving back to the community and looks forward to supporting families through High Risk Hope.
Taking Care of Your Gums: How Gum Disease Can Cause Problems During Pregnancy
written by: Dr. Amanda Tavoularis, Dentably
Expectant mothers have a lot to think about when it comes to maintaining their own health, as well as the health of their soon-to-be child. Traditionally, these health maintenance needs are addressed through supplemental nutrition, as well as providing special attention to one’s diet. At the same time, though, dental care is often overlooked, despite several known links between inadequate oral care and pregnancy complications.
Though you might not expect it, pregnancy and dental care actually go hand-in-hand. This is due to a variety of health issues that may spring up as a result of periodontitis or gum disease. This condition results from an infection in your gums, which may, in turn, activate immune-responses across your entire body and cause complications for pregnant women (such as preterm labor and low birth weight).
Both of these complications are on the rise in certain parts of the industrialized world, so it is imperative that this potential contributing factor is addressed as soon as possible. Periodontitis is unpleasant in general terms and, as you’ll learn, could put you at risk for pregnancy complications.
Over my 20 years working in the field of dentistry, I have helped many women improve their dental health in order to decrease their susceptibility to these pregnancy-related risks. As such, I believe that all women who are considering starting a new family in the near future should take these oral health factors into consideration and discuss them with their healthcare providers at their earliest convenience.
What is Periodontitis?
According to the European Federation of Periodontology, periodontitis (commonly known as gum disease) is a fairly common condition wherein the patient’s gums become inflamed. Often signaled by redness, swelling, and bleeding in the affected area, periodontitis actually represents your body’s attempts to ward off an infection that has infiltrated your gum’s soft exterior.
In regular terms, periodontitis is an undesirable condition that causes oral discomfort in the short term and permanent gum damage if left untreated. Periodontitis can also lead to tooth loss in some cases due to the breakdown of the gum structure. That being said, periodontitis poses a unique degree of risk to pregnant mothers based upon an assortment of recent studies.
Connections between Periodontitis and Pregnancy
Most folks assume that oral health and general body health fall into separate realms based upon the fact that they visit separate care providers for each. But in fact, contemporary medical research has revealed that these differentiated categories can have an acute effect on one another, as evidenced in the case of periodontitis and its effects on pregnant women.
Specifically, several recent studies have drawn a critical link between the presence of periodontitis in an expectant mother with an increased risk for late-stage pregnancy complications. These risks include premature labor as well as low birth weight (even when carried to full-term). Both of these complications can have long-term impacts on the child’s health and wellbeing, making periodontitis a serious issue for pregnant women and their doctors to discuss.
One study (published in the Journal of Natural Science, Biology, and Medicine in 2010) identified a possible cause of this negative reaction. Researchers in that study concluded that “endotoxins released from [the] Gram-negative bacteria responsible for periodontal disease” may trigger an immune response that spreads throughout the body. For pregnant women, this spread may reach to their womb, leading to adverse reactions when it comes to development and delivery.
A second similar study (published in the International Journal of Applied and Basic Medical Research in 2015) identified specific aspects of the “fetomaternal immune response” as being a contributor to this undesirable connection between periodontitis and pregnancy complications. Both studies posted the belief that early detection would be an ideal method of lowering this risk factor because present research cannot conclude whether simultaneous treatment during pregnancy can lower these risks efficiently.
Recommendations for Preventing Periodontitis during Pregnancy
As with many forms of dental and oral hygiene, preventative treatment is the best way to stop a condition such as periodontitis from causing complications among pregnant women. In fact, given the time period required to clear an infection relating to periodontitis, such preventative measures may be the only method to ensure that a negative immune-response to said infection does not trigger the potential complications described above.
The American Dental Association provides several helpful recommendations when it comes to preventing the propagation of periodontitis, as well as preventing the condition from taking hold in the first place. As one might expect, regular checkups are the first line of defense against this type of condition, given the enhanced ability of oral and dental care professionals to spot the signs of periodontitis before it enters a fully-fledged state.
For most patients (pregnant women included), brushing one’s teeth with a fluoride-based toothpaste can greatly decrease the risks associated with periodontitis (and its connected pregnancy risks, in turn). The ADA also recommends flossing as part of this daily regimen in order to clear out inter-molar spaces where plaque that leads to periodontitis is more likely to build up.
Though it goes without saying in the case of pregnancy, smoking should be avoided entirely in order to decrease the likelihood of periodontitis. Similarly, a healthy diet that promotes oral health, in general, can help an individual’s gums fight off the kinds of infections that may put pregnant women at risk for unique complications.
A Dental Disconnect
At the end of the day, some of the misunderstandings about periodontitis and its impact on pregnant women can be chalked up to a disconnect between several different healthcare fields. As is expected, pregnant women are more likely to ask pregnancy-related questions to the general practitioner, while dental or oral care questions are posed to a dentist or oral hygienist. Because these two lines of questioning don’t usually cross, these noteworthy risks might be missed.
Also, even if every precaution is taken, some mothers and their developing children still may be at a heightened risk for complications. Those who find themselves in this category shouldn’t feel disheartened and should instead turn to the perspectives of other parents in a similar situation for inspiration. Even expectant fathers can learn a lot from these testimonials when it comes to coping with a high risk pregnancy in a healthy manner
Dr. Amanda Tavoularis graduated from the University of Washington School of Dentistry in 1995. Since then, her passion for dental excellence has lead her to continue her dental education at the prestigious Kois Center. For more information, visit Dentably.com.
Balancing The New Baby Budget
written by Emily Graham, Mighty Moms
You’ll likely have to make changes to your budget and lifestyle well before your bouncing bundle makes their debut. This is never more glaringly evident than when you are told you are “high risk,” a vague diagnosis that leaves you scared for the future. Even more alarming, if you are forced into bed rest while you are pregnant, you face potential financial downfall. The average woman of child-bearing age earns a salary that hovers between $35,000 and $40,000. This means that 20 weeks — half a typical pregnancy — without an income can cost you $20,000, and that doesn’t include the cost of hospital services. Depending on your insurance, you might be out of pocket thousands of dollars for an in-patient stay. Nationally, a single day in-patient can cost $2,052. But thankfully, there are ways to manage your money as you watch your savings dwindle. Here are a few tips to help you along the way.
1. Look at Your Health Insurance Options
Depending on your income and other factors, you might be eligible for Medicaid, which will cover the costs of pregnancy. Your baby will likely also be covered at birth if you qualify. Healthcare.gov also notes that pregnancy qualifies as a special circumstance, meaning you can change your marketplace insurance plan during this time to a more affordable policy. Ameda explains that many insurance plans cover the cost of a breast pump; if you plan to breastfeed, this can save you hundreds of dollars.
2. Set Up a Baby Registry and Share It with Your Loved Ones
If there’s one thing that everybody loves, it’s buying new things for a new baby. When you find yourself in a cash crunch, setting up your baby registry is an opportunity to not only bond with your friends and family but to also ease your baby-budget burdens. Many of your favorite stores offer convenient online baby registries. What’s more, you might even be able to find a promo code or discounts for other retailers that sell items you will need, including items such as pregnancy pillows, journals, and keepsakes. Keep in mind, that if you are considered ‘high risk’ early on in your pregnancy due to factors such as IVF, advanced maternal age, or previous complications with an earlier pregnancy, setting up your registry even earlier will help greatly if you have to go on hospital bed rest and can really take some anxiety of your plate knowing you have these things for baby already purchased.
3. Price Shop Delivery Options
Most women who go on hospital bed rest have been admitted on an emergency basis and have not prepared to be there. However, with a little pre-planning research, you could save money and find the best hospital for your care, even sooner. Believe it or not, hospital systems do not base their pricing on what the others around them may charge. There are unique factors that go into the overall cost of each potential delivery location. Even if you have insurance, you can save up to 40 percent of your medical services simply by comparing prices. MarketWatch explains that as of January 1, 2019, hospitals are required to post their standard charges online. With a little research, however, you can get a much better idea of what you stand to pay for maternity care.
4. Make Changes at Home
Small lifestyle changes can have a big impact on your budget. Maintaining an ongoing shopping list, eating healthfully, adding fresh fruits and vegetables to your diet, drinking water, and cooking instead of dining out are all great ways to save. You might also consider reorganizing your home with less clutter and selling your excess household goods at a yard sale. Many cable, phone, and utility companies offer a discount for setting up automatic payments, so ask about these as you pay your monthly bills. Another way to cut costs is to eliminate services that you do not need at the moment, such as a gym membership or premium cable subscription. Then We Saved, a favorite blog of yours truly, offers many more tips on saving money around the house.
While none of the above ideas will completely replace a lost income, they can help you live within your means until you can get back to work. Small actions can add up quickly, and the old adage about a penny saved holds true. Remember, opportunities to balance your budget are everywhere — all you have to do is look for them. Please visit Mighty Moms to read more topics related to your mom lifestyle.
What To Do If You Think Your Child Has a Developmental Delay
Many parents of premature babies wonder if their child might have a developmental delay due to their early arrival. Amy Patenaude, a licensed school psychologist, details what you can do if you suspect your child has a developmental delay.
written by Amy Patenaude, Psyched 2 Parent
According to the Centers for Disease Control and Prevention (CDC), the prevalence rate of a child having a developmental delay is 1 in 6 children. While this ratio may seem high, it highlights that having a developmental delay is more common than one may think. These delays could come in the form of having Autism, ADHD, a delay in talking or walking, and/or a learning disability. As a parent, one of the best things that you can do for your child is reaching out to qualified professionals, such as your child’s pediatrician, a school psychologist, daycare provider, or an early intervention specialist to talk about your concerns and what you can to do as a parent to best help your child.
Developmental Delays: Birth to Two
A developmental delay occurs when it takes longer than normal for a child to reach a developmental milestone for children between the ages of birth to two. According to the Florida Department of Education, we are looking for any delays when it comes to a child’s cognitive abilities, communication abilities, motor skills, self-help skills, and social-emotional development. In addition to this, a child may experience a developmental delay due to an established condition, such as having Autism, Down’s Syndrome, and/or a severe attachment disorder. For more information on how this is outlined for birth to age two, you can get more information here.
If your child is between these ages and you suspect that your child is behind his or her peers, one of the first things that you can do is talk to your child’s pediatrician, a school psychologist, or an early interventionist. In the state of Florida, there is a program called Early Steps. This program is designed to support children and their families by providing early learning experiences that will help set children up to be successful when they start school or (much later) enter the workforce. If a child is found eligible for services, the family works with an Infant Toddler Developmental Specialist (ITDS) and develops an Individual Family Service Plan (ISFP). The ISFP is a road map for both the family and the ITDS to ensure that appropriate developmental goals are set and the goals are measured to ensure that progress is made. When it comes to developing the ISFP, parents are a member of the team and their input is greatly valued. As a parent, you know your child the best and can advocate for what you think your child needs. Once the plan is developed, the child and family will work with an ITDS. As your child and the family work the ITDS, progress is monitored to see whether or not your child is reaching the goals outlined in the ISFP. When children have met their goals and are meeting developmental milestones, they are able to exit out of Early Steps and no longer need the services.
Developmental Disability: Ages Three to Five
Sometimes, a child may need more help once they reach their third birthday or, as a parent, you may start to have concerns about your child reaching developmental milestones after his or her third birthday. There are still several services and supports that you can access through your local public school district. For children who have received services through Early Steps and continue to need services to reach his/her developmental milestones, these children are able to transfer from Early Steps to the public school system special education program. For children between the ages of three and five, they can be evaluated by the school districts’ preschool special education services team to determine whether or not they are eligible for services. Similar to a developmental delay, a developmental disability is when a child experiences a delay in one or more of the following five areas: self-care, cognitive ability, communication skills, social/emotional development, and/or physical development. Once a child has been found eligible for a developmental
disability, the team develops an Individual Education Plan (IEP). This plan details the child’s abilities and the goals and objectives that the special education teachers and support staff (such as speech-language pathologists, occupational therapists, physical therapists, and/or school psychologists) will be working on with the child. Typically, an IEP is reviewed and updated annually; however, if there are any concerns from the parent and/or teacher, the IEP can be reviewed more frequently. Typically, special education teachers provide regular updates to the child’s parents about how the child is doing and what is being worked on in the classroom.
Parenting Advice Take Away:
- Having a developmental delay is common
- As a parent, you know your child the best and you are your child’s BEST advocate
- Early Steps provides services for children from birth to age two
- The public school district provides services for children between three and five years of age
Read more from Amy at Psyched2Parent.com and follow her on Instagram and Facebook at @psyched2parent.
Resources for Parents:
Florida Department of Education definitions of developmental delay:
http://www.fldoe.org/academics/exceptional-student-edu/ese-eligibility/
Early Steps: Tampa Bay Area:
https://health.usf.edu/medicine/pediatrics/early-steps
Psyched2Parent: Parenting Blog on Using Positive Parenting Practices:
Florida Diagnostic and Learning Resources System:
Hillsborough County Public Schools: Pre-K Exceptional Student Education:
The Parent Perspective | October
This month, on an early and special edition of The Parent Perspective in honor of Pregnancy and Infant Loss Awareness Month, HRH staff member Angie Bresnahan shares her role in curating our Bereavement Program. As a parent who lost her child in the neonatal intensive care unit, hear her perspective of how these items were selected and why they are helping families in your community experiencing loss. For questions regarding our Bereavement Program, email us today. To make a donation to our Bereavement Program in memory of a loved one, please click here.
“On February 20th, 2016 at 28 weeks pregnant I gave birth to my twins, Beren and Adalyn. Five days later, Beren suddenly died. Adalyn remained in the NICU for 95 days. I remember walking those halls watching other new mothers leave the hospital with their beautiful healthy babies. Adalyn fought a great fight and we were able to bring her home. We felt blessed to leave the hospital with her, but carried the weight in our hearts from leaving without her other half.” – Angie Bresnahan
Before Angie Bresnahan was an HRH staff member, she was a mother mourning her son. Last month, we heard Angie’s story. This month, Angie shares how her loss became the driving force behind a new program with High Risk Hope, our Bereavement Box Program.
High Risk Hope’s Bereavement Boxes arrive when the families need it most and when they should not have to think of ways to remember their child. They need time and space to mourn. Angie shared her most coveted items and missed opportunities for those sacred moments after a loss. With that, we curated an opportunity for lifelong memories.
Teddy Bear, “It is a hospital requirement that a mother is escorted out in a wheelchair, no matter what. I remember seeing women being pushed out to their cars with the car seats in tow and their babies in their laps. They looked exhausted but happy. I also saw a few that had an empty lap. They were exhausted… and devastated. They were leaving without their baby. After Beren’s passing, we bought a bear that we include in every single family photo to this day. It is a symbol of Beren and that he is an unforgettable member of this family.”
Journal, “Life during those days were a blur. You have to be so concentrated on getting through the motions that you don’t (and shouldn’t) have to think about what you’ll need in the future to remember your baby. I write letters to Beren now and some things I don’t remember until I look back at my journal. Even now, a nurse will remind me of something small, like how his pinky toe would curl up. If I could go back, I would write down every little detail about him – so I could remember it forever. Writing my way through this journey was therapeutic for me then and it still is today.”
Handprint Kit, “I didn’t have one of these but I wish I had. Beren’s ink footprints that were taken by a Respiratory Therapist mean the world to me and I will always cherish them. Every parent counts those hands and toes once born, and with this, you can look upon something real and tangible that was theirs.”
Tin Memory Box, “I only have a few items that have Beren’s name on it, and his hospital name bracelet is one of them. I may be one of the few, but I am someone that is very sensitive to smells. To this day, I have Beren’s baby blanket in a Ziploc bag to cherish his smell. I really believe it to be the same with his hospital bracelet, or even lock of hair. This tin memory box locks in a lifetime of memories for me.”
Candle, “I know that High Risk Hope sampled so many different candles before deciding which to include in the Bereavement Boxes. It was important to have a scent that definitely had a presence but was not overwhelming. Like myself, I envisioned many families lighting this candle on their child’s birthday or anniversary of their passing in remembrance of their spirit.”
Forget Me Knot Garden Kit, “For many, it is so impactful to be able to see something, representing your loved one, grow. Plant these Forget Me Knots, nurture them, and take each day as a new opportunity to grow with them.”
Bereavement Gown, “I was ecstatic to hear that High Risk Hope receives consistent donations of Bereavement Gowns from their supporters. A few are made from vintage wedding dresses and fabrics, but all of them are made with genuine love. I think that’s comforting to know when received.”
As the years go on for many of our families experiencing loss, High Risk Hope has learned that the most important thing we can do is acknowledge their child’s existence. We hope that with our Bereavement Program, we’ve not only given helpful items to assist in creating lifelong memories, but the knowledge that they have advocates and love here at HRH and with our supporters, all of you. No longer in our arms, forever in our hearts.
For questions regarding our Bereavement Program, email us today. To make a donation to our Bereavement Program in memory of a loved one, please click here.
The Parent Perspective | September
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. Do you have a question you’d like addressed on The Parent Perspective? Email us today!
Sandra Carlin, Issac born at 25 weeks
“November 2017 was the first Tot Trot our family attended. While several families celebrated their child’s NICU graduation, ours was still fighting for his life. We learned about the Tot Trot from a flyer in our son’s NICU. Not knowing our son’s future, who was born at 25 weeks gestation in October, we decided to attend the Tot Trot on his behalf as a way to solidify with the universe the existence of our son. Family flew in from out of town to join us, and we were also met by several friends unexpectedly on the day of the Tot Trot. Just seeing all the preemie babies who made it, especially on the Miracle Mile, was all the encouragement we needed. Isaac came home after 104 days in the NICU, and the following year his image was part of the Miracle Mile, with the purpose to give hope to those starting this journey. ”
Andrea Bryner, Grayson born at 27 weeks
“Our son Grayson was born at 27 weeks, 3 days after my water broke at 21 weeks 4 days. He was in the NICU for 130 days (4.5 months) and it was a wild ride with many twists and turns. When we were finally released from the hospital, we were home for about 2 weeks before the Tot Trot. Even though Grayson was still on oxygen, we went and were so glad we did. We were able to reconnect with Grayson’s primary night nurse, Brandi, and his primary neonatologist, Dr. Vargas. Our family was able to see other kids who were preemies, running and playing around the Tot Trot, and it gave us continued hope Grayson will one day be following in their footsteps. To see all of the former NICU babies so happy and healthy made our hearts full. Thank you, HRH, for making this event happen. We can’t wait until this year!”
Jennifer Fabian, John Paul born at 33 weeks
“Attending the Tot Trot to me has changed over the past couple of years. Our first attendance, in 2017, our son was 7 months old. At that time, we were still dealing with medical issues and life was not easy. Attending the Tot Trot at that time gave us hope that things would get better. In 2018, we had a strong, happy, healthy boy and being there meant giving other people hope. We had been through the worst of it and it was our turn to show new parents things can and will get better. We had the proof. Over the past few years we have been very successful with fundraising for HRH, I volunteered for the race committee in 2018 and put together a great team of friends and family. HRH has, and always will have, a special place in our hearts. We are looking forward to this year’s Tot Trot!”
Holly Stallings, Henry born at 34 weeks

Register for the 7th Annual High Risk Hope Tot Trot presented by Jersey Mike’s Subs today! Click here.
High Risk Hope has a new Program Coordinator | Angie Bresnahan
Angie has been a volunteer at High Risk Hope for 3+ years. She first heard of HRH when she was on bed rest at St. Joseph’s Women’s Hospital while 25 weeks pregnant with twins. On February 20th at 28 weeks pregnant, she gave birth to her son Beren weighing 2 lbs. 9 oz. and daughter Adalyn weighing 2 lbs. 11 oz. They were the most beautiful people Angie and her husband TJ had ever seen. They were the tiny precious gifts they dreamed of for so many years.
Adalyn had a few complications at birth but Beren was in great shape, as strong and healthy as you can hope for with a premature birth. So you can imagine the shock and heartbreak when they lost Beren just five days later. It took a month to learn the cause of his death; an autopsy revealed he had an undetectable infection around his heart. Angie and TJ treasure the few days they had to hold Beren and show him how much they love him. They think about him and miss him constantly. Adalyn remained in the NICU for 95 days. She is now a healthy, sweet, tough 3-and-a-half-year-old and a constant reminder to everyone of how precious life is. She loves going to the beach, reading books, animals and playing with her friends in preschool.
Angie hopes in sharing Beren’s story, families know it is ok to talk about their babies that are no longer with us. Additionally, sharing her daughter Adalyn’s story, one where preemies can – against all odds – have the support and care they need to fight and thrive, helps inspire all who get the chance to meet her. Angie was crucial in developing HRH’s Bereavement Program. Next month, in honor of Pregnancy & Infant Loss Awareness Month, she will be shedding light on the creation of our Bereavement Boxes and how they have helped many families in your community so far. We are very excited to have someone as passionate about our mission as Angie. Help us welcome her to the HRH team!
The Parent Perspective | August
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. Do you have a question you’d like addressed on The Parent Perspective? Email us today!
Kassandra Morales | Jaxon, now 1 year old
“Our experience in the NICU was scary but once you ask questions and start learning about the machines, every beep of those machines and cables make you feel more confident. Life after the NICU is a little challenging. After 57 days in the NICU, Jaxon finally came home with me. It was such an adjustment–no more hospital trips, nobody to guide you, and now what you learned at the hospital is your every day life. When Jaxon was 5 months old, he had to get an NG Tube (Nasogastric tube) for feeding and once the NG tube was placed, it was KEY to ask as many questions as I wanted and whenever I wanted until learning and feeling confident. NG tube feedings required checking placement every feeding, calculating the volume of formula and duration, changing constantly the tape holding the tube, scheduling feedings and finding a good position for feeding. Now he is 1 year and 6 months and no longer has the NG Tube, but we do have therapies they are a big part of Jaxon’s development. We take it day by day and every single week he has more and more improvements!”
Laura Luksik | Emily, now 3 years old
“Bringing Emily home after 77 days in the NICU was one of the best days of our lives. We had been waiting for this day very impatiently and by this point, we were mentally prepared and excited! Our older son was a preemie too and he spent 12 days in the NICU. Although it definitely was not as long and definitely not as intense, it was something we had done before and we were more than ready to have our family together and complete under one roof. Of course, we had our worries and anxieties. I remember the day we finally got discharged we were running out that night trying to find an Owlet sock (tracks heart rate and oxygen level); unfortunately, we could not find one in stock and we could not wait for it to be ordered. After a stressful night without any cords or monitors, Emily slept without incident and that instantly made us more comfortable and reassured that we had nothing to worry about at home. We were also more than ready to be ‘normal’ again and we quickly fell into our new family’s routine. We were not as worried about being out in public as she had already received her first set of shots and she was almost 3 months old at the time of discharge. For our family, we felt we overcame the challenges pretty quickly knowing we had already done this once before and also having had so long to mentally prepare for this day. It was a welcome relief and we wanted it to be a day full of love and excitement rather than worries and stress.”
Marshella Pounds | Emerson, now 2 years old
“The main thing I remember about taking Emerson home was the terrifying feeling around having to change his trach ties as well as his trach. I remember thinking that his trach was going to slip out and that we would definitely end up back in the hospital. I was relieved when that didn’t happen. Aside from that, I remember our first trip to the doctor’s office when we had packed all of his bags and got him in the car with his vent, but it kept alarming. We could not figure out what was wrong and we followed all of the instructions our respiratory therapist gave us. I ended up texting her and it turned out that the vent alarms when it is unplugged and we just needed to hit the reset button. We felt extremely silly and got a good laugh out of it.”
Baleigh Margol | Avelyn and Slade, now 4 years old
“Avelyn was ready to come home after 12 weeks, and when the day came, I panicked. She needed to be on oxygen, and use a pulse oximeter and apnea monitor. A representative had come in weeks before to show me how to use the equipment, but between having one baby at home and one in the NICU, my mind was completely gone and I couldn’t remember how to use any of it. I begged the nurses and doctors to keep her. I totally lost it. I just knew I was going to blow her lungs up by misusing the oxygen, or that she’d stop breathing and I wouldn’t be able to get her to start again. Finally, one of our primary nurses came in from working in a different area, talked me off my ledge, and gave me the pep talk I needed to take our tiny baby home. Though the monitors were cumbersome (she could only be moved as far as her cords or tubes allowed), they ended up giving me incredible peace of mind. While Slade was still sleeping in our room so I could check on him throughout the night, I knew Avelyn was safe in her crib and that we’d be alerted the second her O2 dropped or her heart stopped. She was seven months old by the time she came off of everything and has been a strong-willed, sassy little delight ever since.”
Do you have a question you’d like addressed on The Parent Perspective? Email us today!
The Parent Perspective | July
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, Addy (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.”
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The Pizzo Family Story
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.
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