You Know You’re a Preemie Parent in the NICU When…

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.

They Need to Know that Prematurity Doesn’t End When You Say Goodbye to the NICU

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 Well-meaning grandparents can offer up critical and outdated (not to mention unwanted) advice about weight gain, milestones, and other things that are just plain different when you have a preemie.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.

Things You Might Not Know About Preeclampsia

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?

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A Recap of Our ‘Tinis for Preemies Evening Benefitting Preemie Families

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.

Preemie Moms Share Their Pre-eclampsia Symptoms

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.


Know the Signs of Pre-eclampsia

Know the signs and symptoms of pre-eclampsia! Be alert, because the earlier the risk of developing pre-eclampsia is known, the more likely it is that treatments will be effective. EFCNI prepared this graphic to introduce more pregnant moms to the signs of pre-e:

graphic by EFCNI


10 Years of Helping Families with Preemies

In 2018, Graham’s Foundation entered its tenth year of improving outcomes for preemies and their families. With that in mind we’re eager to share our annual report – an infographic detailing just some of our 2017 successes and 2018 goals.

Unfortunately, even after ten years there are still families we’re not reaching. Your support means so much, to us and to the tens of thousands of parents of preemies touched by our programs. A donation of any amount, given now or as a recurring gift, will ensure that we can continue to support families through one of the most difficult journeys they will ever face.

We’re so grateful to you for helping us expand our impact in 2018 and beyond!

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