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Four Tips for Parents Coping with Premature Birth

July 9, 2018 by

Mom with micropreemie on her chestIt’s simply a fact that premature birth turns a family’s world upside down and tests the limits of their resilience. Parents of preemies face challenges that most people can’t even imagine.

So it’s only natural that your baby’s early arrival can leave you feeling stressed out and frightened. Some of your fear may fade as you learn about and participate in your preemie’s care, but you’ll likely experience a range of emotions throughout the prematurity journey.

Here are four tips that can help you cope:

Remember that your preemie is exactly where he or she needs to be right now. Try to draw strength from that fact. The Neonatal Intensive Care Unit (NICU) is staffed by specially trained healthcare professionals who understand the special needs of premature babies.

As overwhelming as the sights, sounds, and rhythm of the NICU can be, there are still many opportunities for bonding. If you are unable to hold your baby, you can read and sing, place an object infused with your scent in your baby’s isolette, or participate in routine care as allowed by your NICU. Even holding your baby’s hand can be reassuring for both of you.

Don’t blame yourself for your baby’s premature birth! Many parents ask themselves if they are somehow to blame, but it’s a question that usually has no satisfying answer. If you don’t already know why your preemie came early, chances are that you will never know. Accept that your family’s reality happened to involve premature birth and try to move forward.

Having an infant in the NICU is exhausting! Being there for your preemie means taking care of yourself, too. Eat and sleep. Don’t sweat the small stuff at home. Accept any and all offers of help. Remember, people wouldn’t offer if they didn’t want to lighten your load! And if you’re feeling depressed, talk to a professional. Anxiety, depression, postpartum depression, and even PTSD are relatively common among parents coping with premature birth.

As isolating as premature birth can be, try to remember that you are not alone! Many parents have gone through this and you will come out stronger on the other side just as they did.

 

Categories: Parent Wellness, Parenting Preemies, Supporting Preemie Parents
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A Q&A with the Creators of the MyPreemie app for Preemie Parents

July 1, 2018 by

What inspired the creation of the MyPreemie app?

My Preemie App logoThe app was a natural evolution from our book Preemies: The Essential Guide for Parents of Premature Babies. It doesn’t substitute for the book, but complements and adds to it, putting at parents’ fingertips, right on their mobile devices, key information, tools, and emotional support they need while their baby is in the NICU and afterwards. It is the result of our understanding of these families’ stressful experience and desire to help them with the most up-to-date kind of tool available.

Why is the MyPreemie app’s Diary better than a traditional baby book?

Most baby books are geared to full-term babies and don’t begin to capture the events and emotions that go along with premature birth. Also, when you’re spending hours in the NICU every day, it’s hard to find the time and energy to devote to a paper baby journal – only to find you regret it later, when memories of the first days and weeks have faded. But for those long hours in the NICU, a diary on your phone or tablet works beautifully. You have it with you by your baby’s bedside, when you’d love something baby-oriented and productive to do between feedings or conversations with the staff.

MyPreemie’s Diary is a combined baby journal and adult diary specifically focused on the experience of premature babies. It elicits facts, feelings, and photos with multiple-choice prompts that are meaningful and easy to complete, and as much space as you want to write free form. Because it’s digital, the Diary can adapt itself to each preemie’s path, and can be shared in a snap with relatives and friends, via email or Facebook, right from the NICU. It has the gently whimsical look of a hand-illustrated baby book – calming for parents stranded in a high-tech medical world. You can even choose the color and design of the pages – one of the small delights we aimed for throughout the app. And the app’s Diary can be printed in PDF, so you have a paper book to preserve.

MyPreemie App for Parents

How can the app help parents of preemies stay organized?

MyPreemie is very practical, as an app should be. For example, NICU parents are often overwhelmed with medical information at a time when they typically have trouble focusing and remembering. So the app’s Pocket Guide to Preemies – essentially a mini-book within the app – comes with a list of Suggested Questions after each topic to ask the doctor or nurse about your baby. One tap on a question transfers it to a Remember to Ask list, where it’s easy to find, along with other questions you type in. A parallel Remember to Do list helps keep personal tasks organized. In the app’s Trackers section, parents can record their baby’s weight, length and head circumference measurements and see them plotted on special premature infant growth charts, to check their preemie’s trend over time and whether he is growing as expected.

The Diary gives parents a record of when events occurred. And a section of the app called Treasured Mementos presents a checklist of meaningful items – such as the baby’s hospital bracelet or isolette name card – for parents to gather as keepsakes of their child’s early start in life, to be cherished in the future. In our vision, when families of preemies are better organized, it also means they gain more control of their experience.

Does the app address the emotional needs of preemie parents?

Absolutely; we wanted MyPreemie to be a complete tool kit for self-help. In the NICU, where young preemies are hospitalized at birth, parents watch as their babies struggle through many possible medical complications of prematurity and slowly learn how to breathe, eat, and live outside the womb. Keeping a journal like the app’s Diary has been shown to help decrease depression and anxiety in NICU parents. The Diary helps parents express their complex emotions indirectly, by choosing a weather icon to describe the general mood of the day, and directly, by selecting from a list of positive, negative, and neutral feelings and writing comments. A few prompts encourage a positive focus, such as “Today I’m looking forward to…” or “I’m grateful for…”

Since parents at this time may prefer to avoid emotionally charged conversations with relatives and friends, they can keep them updated by sharing the app’s pages by email or Facebook. Also, parents often feel they’ve handed over the care of their baby to doctors and nurses and feel excluded. To help establish friendly relationships and communication, the Diary asks for the names of the nurses taking care of the baby each day, and the Pocket Guide provides information and suggested questions to ask them, giving parents the tools they need to participate.

Would you say the app empowers moms and dads coping with premature birth?

All sections of MyPreemie are geared toward empowering parents by offering them information and support, and conveying a sense of normalization – acknowledging the obstacles and reassuring parents that they are common and expected. This is crucial when a preemie goes home, too; many families continue to have anxieties and fears because preemies can be more demanding to raise. Most preemies are destined to live a happy and productive life despite their early birth: conveying this realistic hope to families has always been the main inspiration of our work, and technology is offering new opportunities to fulfill it.

What has the reception been like from parents who’ve experienced premature birth?

Incredible! MyPreemie has received unanimously enthusiastic reviews and comments on parents’ blogs. This positive feedback means the world to us and makes all our work on the app worth it!

Categories: Life in the NICU, Preemie Parent Voices, Supporting Preemie Parents
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How Much Will You Tell Your Preemie about Their Premature Birth?

June 25, 2018 by

When kids reach a certain age, it’s not uncommon for them to express an interest in birth and babyhood. For parents of preemies, this phase – in which baby books suddenly become more popular than story books – can be a tough one. The reality of premature birth isn’t always pretty. And sometimes premature birth and the impact of prematurity can make for a downright frightening story. Preemies themselves, of course, are beautiful and amazing, but describing prematurity may be difficult when you’re talking to children.

Whether you talk to your preemie about his or her premature birth and how much you decide to reveal in any one conversation is a personal decision that will depend on so many factors. The age of your child and his or her sensitivities can play a role. Your own comfort level may be a part of your decision, as well. It should be said that there’s no right or wrong way to talk to your preemie about prematurity – whatever you decide in the moment will be right for your family at that time. At a different point or in a different setting, you may feel driven to reveal more.

Many parents of preemies begin simply with a statement like “When you were born, you needed help to breathe and eat, and lived at the hospital until you were well enough to come home.” For other moms and dads, the lasting effects of prematurity are such a part of everyday life that their children have always had some understanding of what it means to be a preemie. There are young children who are excited and curious to see their baby pictures… wires, monitors, and all, while a few children may find images that include medical paraphernalia a little scary. Still others are fascinated by the idea that they were only “so big” when they were born.

As your preemie gets older, being open about the realities of premature birth may be a necessary part of securing the services that your child needs. Or your child may simply be the kind of girl or boy who asks a thousand questions and will only settle for detailed answers! Some children – particularly older children who are developing a strong sense of self in the present – may veer in the opposite direction and not want to discuss prematurity at all. That’s okay, too.

This is my son Jay. He was born at 27 weeks weighing 2 pounds, 4.8 ounces. He spent the first 72 days of his life in the NICU. He turned 5 on November 28th and is a healthy, happy, smart little boy.  ~ Karen

Your preemie may actually let you know exactly how much or how little information he or she needs or wants. Younger children are typically satisfied with basic answers to their questions about early birth and the equipment they see in their baby pictures. Older children may begin to ask how you felt during the NICU days. Ultimately, if you’re unsure how much to share at any given time, let your child be your guide.

How much have you told your preemie (and any siblings) about premature birth and the effects of prematurity on your whole family? And how old are your kids?

Categories: Life After NICU, Parenting Preemies, Preemie Parent Voices, Supporting Preemie Parents
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What I Learned When We Lost Our Preemie

June 22, 2018 by

Today’s post comes from preemie mom Nicole, who had to say goodbye to her preemie far too soon. The experience is one that has already taught her a lot and she wanted to share what she has learned so far in case it can help new parents dealing with the loss of a preemie.

On April 17, 2018 my husband and my whole world changed. It was the day our baby died. NOTHING prepares you for the death of a child. Nothing. After several days of being in the hospital due to pregnancy complications, having a terrible mysterious infection, and being in an insane amount of pain, I gave birth. I had a full labor and delivery at only 20 weeks pregnant due to cervical insufficiency. Babies that little simply just can’t make it.

We had exactly 99 minutes with our little boy, Kade, until God took him Home. The only physical thing we have left of him is the hospital blanket we held him in. That’s it. To say our hearts our broken is an extreme understatement. However, there are some things I have learned going through something like this. I am hoping these can help ease the minds of others who have lost a baby and show that you aren’t alone in how you are feeling.

  1. Grief sucks. One moment you’re fine, the next minute you’re sobbing on your baby’s bedroom floor holding his never worn clothes. One moment you are walking through Target, but then you come across the infant section and have to put your basket down and leave because you don’t want people staring and wondering why you are sobbing in the middle of a store. One moment, you’re having lunch with a friend and seem to be okay talking about her current pregnancy, the next moment you’re driving home from that lunch and have to pull over because you can’t stop crying about all of the things you don’t get to experience with her anymore. You wake up to “just another day”, but that day was supposed to be your baby shower, a baby appointment, or your due date… and you won’t be able to get out of bed that day. You stare at all the unused baby things people sent you, not knowing what to do with them. Do you put them away? Do you leave them in the room that was supposed to be your baby’s? Grief is nasty. It makes you feel so alone. It makes you do stupid things. It makes you jealous, makes you angry, makes you say things you don’t mean to people you care about. Grief makes you anxious, makes you want to stay home all the time, it just takes over you. It. Just. Sucks. BUT, you have to make sure you go through all the stages of grief, as many times as you need to. Take as long as you need.
  2. Everything is a trigger. The baby shower invitation you get in the mail? Tears. The baby announcements from your friends and family? Tears. Seeing pregnant bellies? Tears. Seeing babies with their moms and dads out in public? Tears. However- these tears aren’t selfish, no matter what people might think. It’s OKAY to hurt. It’s OKAY to tell your friend you don’t feel like hanging out because you aren’t sure how your heart will handle seeing her newborn baby. It’s OKAY to not attend that baby shower because it will be too hard on your heart. It’s OKAY to leave an event early that may have lots of babies and pregnant bellies. It’s OKAY to feel this way. Triggers are everywhere- even in places we least expect it. It’s okay to cry. You don’t need to defend yourself to anyone, either. Protect your heart. Protect your energy. If people are going to think you are selfish for doing so, then they are one of the blessed ones who don’t know what this type of hurt feels like. Let them judge you, but just protect yourself. YOU know what YOU need, not anyone else. If they are your true friends, they will come to understand. It may disappoint them that you aren’t at a certain event for them or for their baby, but they will understand. Don’t put yourself through something that you aren’t ready for.
  3. Share as much or as little as you want with people— you might feel judged, but your story might also help someone not feel so alone. Talking about infant loss is uncomfortable. Showing pictures of your extreme premature baby might make people uncomfortable. It’s YOUR baby though. They deserve to be remembered how you want them to be and you get to show them off or talk about them as much or as little as you want. I chose to show all our friends and family our baby Kade. I wanted everyone to see our sweet boy and feel like they got to meet him, even though they didn’t and never will get to. I wanted to share the reality of what happened to us in hopes it would help someone else. It offended some, others thought it was inappropriate to show pictures of my premature baby, but others were proud of us for sharing our story. I will never be sorry for sharing our sweet boy… and you shouldn’t be either if that’s what you choose to do.
  4. Social Media will make you depressed, so limit yourself or change your settings and change what you can see. My Facebook and Instagram were both filled with monthly pregnant belly pictures, pregnancy announcements, birth announcements, and pretty much everything baby related. I would get to the point where I would become so incredibly emotional and just couldn’t function. The posts were just a constant reminder of what my husband and I have lost and what our baby boy will never get to experience. I eventually had to change our settings and had to “unfollow” people to where I couldn’t see any of those posts anymore. Since doing that, my heart has been able to heal a little quicker. Did I feel bad unfollowing some of my closest friends and family? Of course I did. But I know they would understand. Don’t be afraid to do the same thing if you are struggling like I was. Sometimes you need to distance yourself for a little bit in order for you to heal… and that’s okay.
  5. You are going to have to let some people go. This is one of the worst parts of losing a child. There WILL be people, even your own family members, who are too uncomfortable with this kind of loss. Some of our closest friends and family members didn’t come to Kade’s funeral. It wasn’t important to them, or they didn’t realize how important it was to us. While we understood that work is work sometimes, we were hurt when we realized how some of the people closest to us simply just didn’t care enough to be there. You think you can always count on those people to be around in times like this, but if they don’t show up when you need them most, it’s okay to let them go. You will still be surrounded by a flood of friends and family that care. I had a friend who sat in the hospital waiting room while I was going into labor—and I didn’t even ask her to come to the hospital, she just showed up to support us. We had people drive from all over to be with us when I went into labor. We had people drive from all over to be with us on the day of Kade’s funeral. THOSE are the people that you keep in your life. The ones that are always there no matter what. Surround yourself with those people. They will be the key to getting through this tough time.
  6. You will survive this. I’ve had days where I felt like I couldn’t go on. I lost my mom last year to cancer, and now we lost our baby. TRUST ME… I’ve had those days where I just question everything and wonder why God would do something like this. But things will get better. Take it one day at a time. Go for walks, pray, watch a funny movie, go somewhere you’ve never been, read a book. It will get better. Give yourself time.
  7. You will learn that you have no idea what someone is going through or what they’ve been through. With that being said, you now know to never ask the question “so when are you going to have kids?” or never ask someone you just met “do you have any kids?”…. these questions are so simple, but you don’t realize how hurtful they can end up. I took our dog to the vet a week and a half after we lost Kade. The vet was just trying to be nice and was making small talk, but she asked if I had any kids. The pain of not knowing how to answer that question was intense. Do I tell her yes and then have to explain what happened? Do I tell her yes and just hope she doesn’t ask how old he is or what school he goes to? Do I tell her no, but then feel horribly guilty for not acknowledging my precious son? How do you answer that without ending up in tears or without making that person feel guilty? That question is so simple, but can cause so much pain and confusion.

You lose so much when you lose your baby. You miss out on hearing their laugh for the first time. You miss out on their first steps, their first car, their first heartbreak, their high school graduation. You lose all of those experiences and it hurts to think about.

My advice to anyone who has lost a baby, is to keep going. Even if that means that some days you crawl out of bed, just keep crawling. Little by little, things will get easier. You will feel like you again. You will take this horrible loss and learn how to live with it. You will learn how incredibly strong you are. You will learn more about yourself and will become so much closer to the people who stuck with you. While you will never forget your precious baby, you will be able to continue living for them and you WILL get to see them again one day.

Hang in there. Things will get better. You are not alone.

Categories: Preemie Loss & Remembrance
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You Know You’re a Preemie Parent in the NICU When…

June 18, 2018 by

Premature baby

…you measure your baby’s weight in grams.

And the answer to “How old is your baby?” is a story, not a number.

You sometimes feel more like a nurse than a mom or a dad.

You’ve thought about buying stock in hand sanitizer.

Five pound babies look huge, and eight pound babies look impossible.

Of course you know how many CCs are in an ounce.

You’ve celebrated the day preemie size clothes actually fit your preemie.

And the parking attendants and cafeteria staff at the hospital know you by name.

You hear monitors going off even when you’re not in the NICU.

The hospital recliners have started to feel more comfortable than your bed.

When someone says kangaroo, you think ‘care’ instead of Australia.

Premature birth feels like your normal.

Which is why you use medical acronyms like it’s no big deal.

You’ve stopped noticing – or caring – how badly the skin on your hands is peeling.

It feels like your car drives itself to and from the hospital.

And you’ve started to actually crave the hospital cafeteria’s chocolate pudding.

Categories: Parenting Preemies, Preemie Parent Voices
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They Need to Know that Prematurity Doesn’t End When You Say Goodbye to the NICU

June 11, 2018 by

The people in your life may offer you an amazing amount of sympathy and support when your family is in the NICU after premature birth. After all, it’s easy for them to see that your newborn or infant has needs that are different from those of a full-term baby when your family is being cared for in a medical setting. Things can change when you make the transition home after premature birth – particularly if you do so without the need for special equipment or medications. Some parents of preemies find that the outpouring of support that sustained them during the long NICU days is no longer there when their preemies no longer call the hospital home.

When RSV and flu season (or simply susceptibility to infection all year round) keeps these moms and dads housebound, they may sense that their family and friends feel they’re being overprotective. Multiple emergency room visits may prompt not empathy, but rather irritation from employers or relatives who don’t understand the long term consequences of premature birth. Friends with school age children may not be understanding when invitations are declined. Well-meaning grandparents can offer up critical and outdated (not to mention unwanted) advice about weight gain, milestones, and other things that are just plain different when you have a preemie.

It’s enough to make parents of preemies turn off their phones and ignore email!

But the fact is that by the time a preemie’s mom and dad welcome them home, they will know more about prematurity than anyone they know. Going through the experience of having a baby in the NICU means getting schooled in the ins and outs of prematurity – and because all of the lessons involve your dearly loved child, they stick.

Your parents, your partner’s parents, your friends, your boss, and your coworkers (not to mention the woman in the checkout line and possibly even that new nurse at your pediatrician’s office) haven’t been through what you’ve been through. Haven’t watched your preemie go through what he or she has gone through. All they sometimes see is the difference between ‘in the hospital’ and ‘released from the hospital’. They don’t understand that the gulf between hospital and home may be a narrow one. They don’t know how susceptible premature infants can be to certain illnesses. About feeding issues, developmental, and so on.

Mostly, they see your baby, who has been declared strong and healthy enough to say goodbye to the NICU. And because they care about you, they may be so excited by the fact that your family is together that they never ask questions about the long-term effects of prematurity. Consequently, they don’t realize you still need support – maybe lots of it. The best thing you can do in that situation is to be up front with people, insofar as you’re comfortable sharing. Ask for help when you need it. Explain that parents and doctors of preemies can operate on an adjusted milestone timeline. Talk openly about the post-NICU prematurity experience and what prematurity will mean for your child.

Will every friend, parent, grandparent, aunt, uncle, boss, and coworker get the message that the effects of premature birth don’t go away at hospital discharge? Of course not. But most will, and the more your relatives, friends, and associates know about your circumstances, the better equipped they will be to be there for you and your family.

Categories: Bringing Preemie Home, Life After NICU, Supporting Preemie Parents
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Things You Might Not Know About Preeclampsia

June 4, 2018 by

Most of us hope for a “perfect pregnancy,” even though we know that the pregnancy journey is a highly individual one. Preeclampsia is one issue that can quickly turn a typical pregnancy into a scary roller-coaster ride and is a major cause of premature birth.

If you’re not familiar with preeclampsia, it is a pregnancy condition characterized by high blood pressure – but that’s not all there is to it. Preeclampsia occurs in women who’ve never had high blood pressure in their lives, and sometimes only causes a slight elevation in blood pressure.  

The good news is that preeclampsia can be treated – especially if caught very early – so both moms and babies stay healthy. The bad news is that the symptoms of preeclampsia (e.g., swollen feet, back pain) are often very similar to normal pregnancy symptoms, so many women don’t go to the doctor when they’re first having those symptoms.  

Knowing the signs of preeclampsia is the best way to catch it early on and knowing about the condition itself is one way to make it less frightening. Here are some things you may not know about preeclampsia:

More women develop preeclampsia than most people realize. Up to 7% of all pregnancies may involve preeclampsia! That’s because most cases are mild and don’t result in a diagnosis, though it can be a serious, life threatening condition.

Preeclampsia typically appears after the 20th week of pregnancy. Most cases of preeclampsia are seen during the third trimester.

Preeclampsia is more likely to occur during the first pregnancy. That doesn’t mean that being pregnant previously removes all risk, however. Having multiples, a history of high blood pressure, diabetes, a family history of preeclampsia, and other factors can increase a person’s chances of developing preeclampsia. But in some cases, preeclampsia develops without any risk factors being present at all.

Being an older mom or a younger mom can increase your chances of developing preeclampsia. Mothers in their teens and in their late 30s and 40s are more likely to develop the condition.

Mild preeclampsia may not have any symptoms at all. While some women report vision issues, aches and pains, headaches, weight gain, and a general feeling of unease, the most common symptoms that lead to a diagnosis are high blood pressure and protein in the urine. Regular testing is important after 20 weeks.

Preeclampsia affects both moms and babies. The condition can be dangerous for unborn babies because it change how blood flows to the placenta, leading to low birth weights or premature birth.

It can develop after a baby is born. Giving birth is the only way to “cure” preeclampsia but in some cases, it can develop as late as six weeks after a baby is born. For that reason alone, blood pressure checks should be a routine part of all post-natal care.

You can’t prevent preeclampsia, but you can lower your risk. Make sure your doctor knows if you have any risk factors like a family history of the condition so you can be monitored more closely during your pregnancy. For some mothers, it makes sense to have a home blood pressure monitor.

Those headaches might not be migraines. Headaches can signal preeclampsia, whether they’re severe or dull or feel just like your usual migraine. If you have a headache that just won’t go away or keeps coming back, tell your doctor ASAP.

Pain is another less known preeclampsia symptom. Pain in the abdomen or in the shoulders is just another part of pregnancy, right? Except when it’s part of preeclampsia! Even if you’re sure that your aches and pains are totally normal, let your doctor know about them.

There’s no way to prevent preeclampsia. We don’t really know why the condition develops and that means we don’t know how to keep it from happening. Low-dose aspirin and calcium supplements may help some mothers avoid preeclampsia but there’s no conclusive evidence that either of those measures will work for all moms.

It IS possible to treat preeclampsia. When doctors diagnose preeclampsia before 37 weeks, treatment may include bed rest, hospitalization, and/or medication. But in severe cases of the condition, as so many of us know, doctors will deliver babies prematurely to save both the life of the mother and the life of her baby.

Did you deliver prematurely because of preeclampsia? How early was it diagnosed? What symptoms did you have?

Join Our Circle of Hope

 

Categories: Parent Wellness, Preemie Parent Voices
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A Recap of Our ‘Tinis for Preemies Evening Benefitting Preemie Families

June 1, 2018 by

Getting their jam on is Franco Daino, cofounder of Graham’s foundation Nick Hall, Amanda Metzger, Stephanie Risk, Randy LaDue, Vicky Champagne (front far left w/bowa) and Seryna LaDue(front far right) with Dr. Pedro Rocas playing the guitar signed by Tito of Tito’s Handmade Vodka. The guitar was one of the door prizes.

What a party! Graham’s Foundation recently celebrated its 10th year at the Annual ‘Tinis for Preemies event Friday, May 18 at the Carranor Hunt & Polo Club in Perrysburg.

It was after losing one of their preemie twins that Jennifer and Nick Hall co-founded Graham’s Foundation in memory of their son, Graham. The vision has always been “a world where no parent has to travel the prematurity journey alone,” Jennifer said.  

Jennifer, Co-founder and Director of Operations shared some impressive milestones at the event. Our MyPreemie app, developed by nationally-known authors and leading pediatric and neonatal specialists, has experienced a huge surge in downloads. In addition, our Preemie Parent Mentor Program (which provides 24/7 mentoring across the U.S.) has grown to include 29 mentors providing support to over 602 families.

The core initiative of Graham’s Foundation’s mission is still our signature care packages for preemie parents. The very first NICU Care Package was shipped in 2009, and since then, we have shipped over 50,000 Care Packages with requests increasing  year after year. In 2017 alone, we shipped 226% more care packages than the prior year.

We also introduced the 2018 Graham’s Foundation Ambassador Family Seryna and Randy LaDue that evening. The LaDues know all about the stress and fear of prematurity as their son, Caleb Ponce LaDue was born at only 22 weeks.  As the Ambassador Family, the LaDues will be instrumental in connecting other preemie parents with Graham’s Foundation and our programs.            

Amanda Metzger, Seryna LaDue, Vicky Champagne & Stephanie Risk toast to Grahams Foundation!

Our Co-founder Nick Hall orchestrated a very lively auction, including great getaway destination packages, cases of hand-selected premium wines and a category of “Spring Spruce Up” items like home power washing by Beerbower Painting & Power Washing, top coat driveway sealing by Perrysburg Residential Sealcoating & Asphalt, a year’s worth of premium car washes by Expresso Car Wash, lawn services by Hoops Lawn Services, and even a Reve’ Salon and Spa certificate for the person who needs a spring spruce up!

Major supporter Tito’s Handmade Vodka doubled the dollars during the auction, but the bidder paddles really started flying just after Dr. Christy Lorton of Dermatology Associates and Ada Aesthetics stepped up and agreed to match dollars raised for the Care Package program.  Beth Anne Osborne of Ada Aesthetics chimed in at the end of the auction offering an additional match!

In total, the evening raised over $43,000 that will help fund our support programs for preemie parents through 2018.

The evening was made spectacular with farmhouse tables, old Edison-style strung lighting and lanterns by Mager Designs, fabulous food by Fowl & Fodder and delicious signature martinis by Tito’s Handmade Vodka were sipped and savored.  Signature tiny martinis included The Fountain of Youth, The Wildebeest, a Classic Vodka Vesper, and Tito’s Garden – the specialty smaller martini glassware made it possible to try them all!

Invaluable Volunteers Karen Adams and Amanda Brzuchalski – we couldn’t do what we do without you!

Those seen at this most recent ‘Tinis for Preemies fundraiser include Sally Reece with granddaughter and surviving twin of Graham Hall, Reece Hall; Kristin, Grace and Emma Kate Holbrook; Amanda Metzger; Alicia Wagner of Fowl & Fodder and husband John Wagner; Bridgette Holt of Toledo Community Foundation; Chris Becker of Bionix Corporation with JB and Nicole Leboutillier and Jeremy Zeisloft; Robert Scott of Brookside Contracting with Cara Scott and Jennifer King; Pat Sheehan of DMC Technology Group with wife Elaine Sheehan; Patrick Williams of Hylant and wife Rae Anne Williams; Jarrod Demski of Heidelberg Distributing and wife Cheryl Demski; Heidi and Matt Shade; Kelly Ewbank, Jodi Farschman; Tina and Todd Griffith; Betty Lazarro of Sulphur Springs Realty and husband Jim Lazarro; Deborah Born, Lisa Butler, Jane and Dan DiSalle; Dr. Pedro Roca and wife Stephanie Risk with friends Vicky Champagne (gotta love her last name!) and husband Franco Daino.  Deb Buker of Welch Publishing and husband Les Buker were with good friends Dick and Annette Sipp, Marge Black and John and Carol Hall. The Halls are grandparents to the Graham’s Foundation namesake, Graham Nicholas Hall.

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Preemie Moms Share Their Pre-eclampsia Symptoms

May 28, 2018 by

Pre-eclampsia Awareness Month may be coming to a close but that doesn’t mean we have to stop doing our part to introduce pregnant mothers to the symptoms of pre-e! We’ve asked moms to share their symptoms in their own words because everyone’s experience with pre-eclampsia looks a little different. If you’re experiencing any of the symptoms below, consult your doctor as soon as possible.

The first thing I noticed were the flashers. Then I had two of the worst headaches of my life. I had one high blood pressure reading at the Dr. I also had high levels of protein in my urine. The Friday of the weekend that I had my son I had gone into the Dr. for test and to turn in another round of 24 hour urine collection that I had to do. That evening the Dr. called me and told me all of my tests came back as slightly abnormal. That coupled with the headaches, the high levels of protein in my urine and the high BP made him very concerned. -Nathalie N.

Swelling at 23+ weeks, hands and feet. Then at 25 weeks my face was swollen and not feeling great but couldn’t put my finger on what was wrong. Sore head and blurred vision on and off for a few days. BUT I didn’t have protein in my urine. -Claire R.

The hardest part for me was that I didn’t have a ton of symptoms. I had some swelling, but I thought that was pretty normal. The swelling got worse, but I figured that I just had it worse off than most people. However when I went to a doctor’s appointment, my blood pressure was around 150/90. I’ve never had any blood pressure issues so this was definitely new. -Angela P.

My only symptom was swollen feet. Like a previous commenter, I also work in a school and the after the school nurse took my blood pressure, she told me to call my doctor. -Dannelle M.

I had high blood pressure every I went in for check ups. Protein in my urine that increased enough I had to do the 24 hr collection. I had the nausea and headaches but I thought it was normal since it was my first and only pregnancy I didn’t know what to expect. I went in to the doctor one morning due to pain in my upper stomach and back which he thought was probably gallstones. The next day after I turned in my 24 hr collection they called me back in. Blood pressure was sky high, 4+ protein in urine, platelets dropping and my baby was in distress. -Tiffany C.

In hindsight, I dismissed a lot of the “typical symptoms”: headache, dark spots in my vision, nausea I thought was from getting sick from traveling for work. It came and went and I thought if it was something like preeclampsia, it would be constant…I never should have downplayed my symptoms. -Miriam G.

No real symptoms other than swelling, which wasn’t enough to raise any alarms. My preeclampsia was found during a weekly OBGYN visit. It started out as 150/100. I was sent to Triage and my numbers kept climbing. -Danielle

I had no symptoms whatsoever, I felt perfectly fine both times. -Heather L.

I was always tired, my breathing was extremely loud and I was winded. My hands were painful and swollen to the point where opening doors or driving became difficult. By the time my doctors figured out what was going on, it was too late. -Alyson M.

Had major swelling in my ankles and hands. Headaches and blurry vision. I just thought it was 3rd trimester symptoms. Ended up having a Dr appointment that week (my glucose test) when everything happened. My bp was 184/120. They sent me right over to L & D when I thought it was just some routine tests. Found out I had protein in my urine and my blood platelets were low. I ended up having sever preeclampsia and I was at 27 weeks. -Stephanie

I was SO swollen, felt like my skin was going to burst! -Sarah M.

Headaches!!! Felt so “off” like I was waking in quicksand. Just the overall feeling of not feeling well. Then the weight increase started getting crazy. I can’t stress the headache and migraines enough. Then came the protein in the urine. -Karri M.

I had protein in my urine and high blood pressure from the beginning. I did several 24 hour urines. I was slowly gaining weight and my BP was rising. I remember my hands and face swelling. At my 30 week appointment my BP was high and I was up 20lbs+ out of nowhere. No one seemed concerned. I was also seeing glittering spots. -Amber

I had a horrible headache that wouldn’t go away and was different than the typical migraine. My bp was very erratic, sometimes sky high, sometimes perfectly normal, other times almost non existent. No protein in my urine or any other symptoms. -Sarah R.

Swollen feet and ankles, shortness of breath, and decreased fetal movement. I went in at 22 weeks and asked for an ultrasound but was denied. At 23 weeks I demanded one, and she was born via emergency c-section later that day. BP didn’t get really high until after delivery, then stayed high for several days along with severe edema. -Laura S.

I had extreme pain in my upper right rib cage area which was my liver shutting down. -Erin B.

Oh the headaches were fierce, then the carpal tunnel kicked in, finally it was the liver area pain and vomiting for three days that sent me to the er with HELLP syndrome and baby boy was born 24 hours later. -Katrina

Swelling, dark urine, & epigastric pain were first symptoms. I was admitted to the hospital after severe bleeding and the night before I delivered I had the worst headache of my life then lost my eyesight. -Melanie A.

Just didn’t feel well, but couldn’t pin point why. Headaches. Extreme fatigue…beyond the typical I’m pregnant tired. -Jeanine S.

 

Categories: Mothers of Preemies, Preemie Parent Voices, Supporting Preemie Parents
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Pre-eclampsia and Premature Birth

May 22, 2018 by

481469_4598453032301_1476111234_nToday’s guest author is Angie, who shared her story of premature birth due to pre-eclampsia for Pre-eclampsia Awareness Day.

My husband and I married in 2009. We knew we wanted our own family and were eager to welcome our first baby, Adriana, in April 2010. We knew after we had Adriana that we wanted a second child so Adriana could have a sibling to grow up with.

We planned our second baby and everything worked out perfectly. I was still in Nursing school but we knew if I got pregnant in May 2012 that we would expect our bundle after graduation and after we were settled back into a normalcy. On Father’s Day of 2012, I placed a picture of Adriana with a dry erase board saying we were welcoming a new baby in February 2013- the 23rd.

We went to all of our appointments and we were right on track and healthy in all aspects. We went to our 20 week ultrasound and found out we were having a boy! This was so exciting for us!! Who knew that six weeks later we would see our baby?

Once October 2012 hit, I was feeling so tired all of the time. I thought it was from staying up late studying, running after a big blended family of five, and being a mom. At this point we only told a select few people that we were pregnant. We wanted to savor every moment of this pregnancy and keep it special.

941954_10200711781129860_973619930_nNovember 19th, 2012 I was in class and was not feeling well. I would get hot and cold and sweaty and I was having a hard time breathing. I would take large breaths and I felt like there wasn’t enough air in my lungs. The breathing part had been happening at least a week. I assumed it was the baby pushing on my lungs as he was growing bigger. A classmate suggested I had heart burn. I had never had heart burn in my life so who was I to know what it felt like?

That evening when I came home, I was in tears. I tried everything I could to reduce the heart burn I had, a hot shower, a hot bath, medication that was on the approved list. My husband suggested that I go in to the hospital. I was against that because I didn’t want to look foolish to go in for heart burn. In the middle of the night I woke my husband up as I wanted to go in. Our daughter called out for me. When I went to care for her, I fell asleep out of exhaustion right next to her. I told my husband I would for sure call the doctor to let them know so they could at least chart it.

Tuesday November 20, 2012, I called and informed the receptionist of what was going on and she suggested I come in. I set up the time, told my oldest son I loved him and would be back soon as I was just going for a quick check up. I would have never guessed I wouldn’t see him for a week. I got to the doctor’s office and the medical assistant took my urine and took my blood pressure. My urine showed a 3+ of protein and my blood pressure was 160/118. She told me my blood pressure, asked me to lay on my left side, and waited to repeat it. My normal blood pressure is usually 90/60.  (Two or more blood pressure readings of 140/90 with protein in your urine is classified as mild pre-eclampsia). My doctor asked me to go directly across the street to the hospital as she suspected this was pre-eclampsia. She wanted to run other tests as I didn’t fit the typical outline for a person with this.

579004_10200391977014957_629524473_nI called my husband at work. I told him I had to go to the hospital and he wanted to know details. I told him it isn’t good and they want to do some tests. Everything was a whirlwind and happened so fast. Looking back so many things are a blur. I wish I had been better educated on pre-eclampsia. I heard the heart beat in the office. We planned this and wanted this baby. I am healthy and have no medical problems. How could this be happening to me?

The nursing staff was waiting, drawing blood, collecting urine, testing for gallbladder, took my blood pressure every 15 minutes, and put me on medication for blood pressure and pain. My doctor told me I may need to take a indefinite leave from nursing school.

My blood work came back. My ALT, which shows if the liver is damaged, was 49 (high). The reason I couldn’t breathe was because my liver was enlarging. My hemoglobin, a protein that carries oxygen to organs, was 1.8 (low). My platelets were low at 104,000 and dropped to 75,000 (normal is 150,000-400,000). My blood was no longer clotting. My numbers were getting worse.

The doctors came in the next morning and said they wanted to transfer me to a high specialty hospital that had more knowledge of HELLP syndrome, class 2. Even though I wasn’t a typical case, this is what the doctors suspected I might have.

I tried so hard to stay calm- making conversation with nurses, the ambulance men – everyone. I had no idea what was going on or how serious this was.  Thank God I am here to share my story. 

My husband met me at the specialty hospital. I was given magnesium sulfate upon arrival to reduce the chance of seizures. They wanted to prep me for an emergency c-section. Wait? Wait!?

I called my mom. I could hardly speak. I was in pure shock. I told her they wanted me to have the baby. She asked if I wanted her there and she said she was on her way. She KNEW what to expect – I was a preemie. I was currently 26 weeks pregnant. This baby would be 14 weeks early. NO – this was not right. He needed to stay put. I was supposed to have a shower, do pictures, celebrate. Not this. The doctors tried to prepare us for blindness, deafness, lung disease, and many other things.

A doctor came in and did an ultrasound of the baby. This showed absent end diastolic flow. This means there is fetal vascular stress and placental insufficiency. We were told he wasn’t getting appropriate oxygen and nutrients. The baby was positioned in a breech footling position. In this position,one or both of the baby’s feet point downward and will deliver before the rest of the body. A c-section was necessary. A c-section was also preferred since the stress of labor may not be well tolerated by a baby of 26 weeks gestation. Since my blood was not clotting, it was best to be put under and have the c-section so I didn’t bleed to death.

I was wheeled back to the operating room and prepared for surgery. They were going to take my baby from his current home in my uterus so that we could both survive. I felt like I was being crucified – arms out, clothes gone, and a sheet pulled up towards the ceiling below my neck. No one was with me. Not my husband or my mom. What if I didn’t wake up? Who would take care of my kids? Who would replace me? My son would never know me.

Two people were complaining, another two were giggling. My hair cover slid into my eyes. I was crying and I was alone. My husband was not allowed in with me. I laid there and prayed for our lives. I remember nothing else.

My husband tells me they immediately took our baby, our son, to the children’s hospital to be admitted to Neonatal Intensive Care unit. We did not have names ready but decided on Maxwell William.

He was born November 21, 2013 at 4:58 pm. He weighed 1 pound 8 ounces and was 12 inches long. He was a micro- preemie. He had a head full of black hair. He had respiratory distress syndrome and was given a breathing tube right away. He was small for his gestational age, but still in the normal range.

He was the size of two cell phones. He weighed less then a loaf of bread. His head was the size of a dinner biscuit. His thigh was the size of your index finger.

I couldn’t see Max for two days until I was stable enough myself and able to stand and be off of the magnesium sulfate. My blood pressure got as high as 240/180. I am lucky I didn’t have a stroke. We had some visitors and while I was thankful, I didn’t feel right accepting their congratulations. It made me sad that others were able to visit our son before me.

One of my closest friends visited me and that is when I was able to go see my son. I was ready. I was so excited. I was wheeled down to see Max. I had seen pictures of me so I knew what to expect, right?

Wrong! My friend tried being so positive and uplifting. I am so glad she was there with me and my husband. I cried seeing him with all of the tubes and lines coming out of his little body. His skin was thin like tissue paper. His little chest was rising and falling so quickly as the oxygen was pumped into his lungs. He lay on a tiny burp cloth – it was his bed sheet.

Things in life are quickly put into perspective of what is important and not important now. Houses, cars, and possessions are no longer a priority. Others can have it – we just wanted our baby alive.

Max had infections, spinal taps, blood transfusions, surgeries and survived it all. Today we are lucky to have a healthy two year old. He is in therapy and overcame many odds. We have our celebrations and our challenges. I wouldn’t have it any other way.

I did graduate from school. I went back to school the day after I came home the hospital. I am now a nurse and focus on corporate wellness. I am also creating a business in relation to parents of preemies. I bring expertise and value to them by being heart centered and working through any and all needs they have to get through their journey from day to day.

Categories: Life After NICU, Life in the NICU, Mothers of Preemies, Parenting Preemies, Preemie Parent Voices
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