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When Your Preemie Isn’t a ‘Typical’ Miracle

Tales of prematurity in the media are usually focused on families beating the odds… of the smallest preemies moving on to live the biggest lives without any problem more pressing than a tendency to catch colds. Miracle babies, they’re often called. And we won’t debate that they are indeed miracles, but we’ve also seen how attaching that label – miracle – to only those babies born prematurely who thrive and grow and make it to childhood without health problems can be emotionally detrimental to a pretty big group of preemie parents whose kids don’t fit those criteria.

It’s easy to look at the typical “miracle preemie” and wonder why every preemie parent isn’t a part of the miracle club, but we’d argue that they are. That every preemie is a miracle.

what is a miracle baby - prematurity

Given the odds, we’d like to see a redefinition of the word miracle as it relates to preemies. Yes, babies and children who thrive after extremely premature birth are miracles. But so are the preemies who beat the odds in other ways! We’d argue that the boy or girl who learns to walk with a walker at 4, overcoming challenges you and I can’t imagine to do so, is every bit as much of a miracle. Every preemie who copes with developmental issues and still squeezes every last drop of joy from life, at age 2 or 12 or 22 is a miracle, too.

And even the premature baby who touches a family’s life deeply but briefly before saying goodbye should be considered a miracle.

In the end, what is typical anyway? According to one British study, half of all extremely infants born prematurely demonstrate learning and physical disabilities by the time they’re school age. And a pretty high percentage of the earliest preemies struggle with difficulties that can last well into childhood and even into adulthood.

It seems to us that the ‘typical’ preemie miracle story isn’t one of perfect health or perfect grades, but rather many stories of odds overcome in many different ways and of babies who thrive or who simply live their lives or make a big impact in the short time they’re here with us.

What do you think of the term “miracle baby” as it tends to be used with regard to prematurity? What’s your atypical miracle story?

Toasting to Another Successful ‘Tinis for Preemies!

Our signature events are more than just fundraisers. While attracting support for our mission is obviously a primary goal of our ‘Tinis for Preemies series, these special evenings also represent an opportunity for those whose lives have been impacted by premature birth to connect with one other and to give back.

The most recent Toledo ’Tinis for Preemies at Carranor Hunt and Polo Club in Perrysburg attracted more than 100 supporters, including Lauren and David Dzierwa; Pat and Elaine Sheehan; Mike and Deb DeBrosse; Mindi and Matt Marshall; Dr. Christy Lorton, Beth Anne Osborn; Rod, Greg and Neil McElroy; Andrew Wimberly and his wife Brandy Alexander-Wimberly; Jane and Dan DiSalle, and Jackie and Jeffery Stephens.

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Uplifting Quotes for Preemie Parents

All parents of preemies need encouragement to weather the slings and arrows of premature birth. Even though the birth of any baby is a miraculous and awe-inspiring occasion, premature birth also brings enormous worry, fear, and anxiety that can last long after a family has left the NICU behind. When prematurity feels like a battle you can’t possibly, let these quotes bring you comfort and help you find the good in each and every day.

A person's a person no matter how small - Dr. Seuss

“Nothing is impossible, the word itself says, ‘I’m possible!’” -Audrey Hepburn

“You are a true warrior; every day is a precious milestone!” Alvaretta Roberts

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PPA Member Spotlight: Keep ‘Em Cookin’

Angela Davis founded Keep ‘Em Cookin’ after her own experiences with pregnancy complications, bedrest, and premature birth because she didn’t want other moms to face the challenges of bedrest alone. Keep ‘Em Cookin’ is an educational organization that gives pregnant women the greatest opportunity to prevent preterm birth by providing them with current information on high-risk pregnancy and by connecting them with an online community of other women facing a difficult pregnancy. It’s also a thriving online community where moms dealing with complex pregnancies, the threat of premature birth, and the stress of bedrest can connect for support and advice. We had a chance to chat with Angela about her organization and her experiences. Our full Q&A is below.

premature birth organizATIONS - BEDREST


1. Who are the mothers who reach out to you for support? How do they find you and what do they typically need most?

Women tend to find KeepEmCookin when they are searching online for information about their condition (such as a short cervix or an episode of preterm labor), and then they see we have an online community for emotional support as well. The relationships they build and the stories of success are what keep them coming back.

2A. What advice would you give a mom just beginning her bedrest journey?

There are feelings of frustration, sadness, sometimes anger, and often fear. Other high-risk moms and women who have been through it can understand that when very few others can. That’s why I encourage high-risk women to seek an online support group, like the ones you will find at KeepEmCookin.com, Sidelines.org and MarchOfDimes.com.

Also, a woman should be sure she has an OB or midwife she feels comfortable with. You will have more appointments and questions than other women, so you want to be sure you have solid relationship. If you aren’t seeing a maternal fetal medicine specialist, ask your healthcare provider if it makes sense to switch to one.

2B. What about a mom whose chances of delivering prematurely even with bedrest are high?

I encourage these women to stay optimistic, but that doesn’t mean ignoring what could happen next if they do deliver prematurely. All parents should select a pediatrician before their child is born, but this is even more important for the parent who will potentially have a preemie. Your child will likely need to see a neonatologist right after delivery, and it will be helpful to have a pediatrician lined up after the hospital stay who understands the different needs of preemies. Ask your OB for recommendations. A few other tips: Take a tour of the NICU to start to get familiar with it, and look into healthcare coverage for your child to learn what your medical benefits will be.

3. Do you continue to provide support after birth? If so what form does that support take?

Most of the time, moms are too busy with their newborns to stay in touch, but we do have women who send us updates, which I love.  For the women I talk to who deliver prematurely, I refer them to the list of parent support organizations that was created by the Preemie Parent Alliance, found here: http://www.preemieparentalliance.org/member-directory/. I also recommend the Inspire Preemies Community at https://www.inspire.com/groups/preemie/. The parents there are extremely knowledgeable and they really understand the challenges of raising a preemie.

4. Why did you found Keep ’Em Cookin’?

At 24 weeks into my pregnancy with my son, I was at the hospital being treated for preterm labor. My first pregnancy had been complicated and I did a lot of research before getting pregnant again. I had read that a short cervix is the best predictor of a woman’s risk of preterm birth, so I asked for (or demanded, depending on your point of view) a transvaginal ultrasound. My cervix measured just 1.5 cm, so my doctor prescribed bed rest and progesterone.

I had spent 6 weeks on bed rest for my daughter due to preterm labor, so I absolutely dreaded what being stuck at home and limiting my activity for four months would be like.  It was terrible. I often wished I had someone to talk to who understood how I felt on bed rest: helpless, isolated and scared. Fifteen weeks later, when my son arrived safely at 39 weeks and 3 days, I knew I wanted to create a place online where women experiencing high-risk pregnancies could connect with one another and cheer each other on. That’s when I created KeepEmCookin.com, a place for these women to meet.

In our community, women can get advice from each other, share their milestones as they keep cookin’ from week to week, vent if they need to, and then celebrate the birth of their babies!

I also have a Pinterest page with separate boards for activities for moms, activities for toddlers, and inspirational images (https://www.pinterest.com/keepemcookin/). On Twitter I post updates about some of our moms (https://twitter.com/KeepEmCookin).

5. Where do you see the organization in 5 years?

I sincerely hope the website will be available to high-risk moms for years to come. Finding advertising sponsors for the website has been difficult, so I fund the site personally, along with contributions from friends, family and a few KeepEmCookin “graduates.” I can’t imagine having a day when I don’t connect with these supermoms.

keepemcookin

Advice for Parents of Preemies from Parents of Preemies

When it comes to what to say to parents of preemies (and what not to say to parents of preemies), the moms and dads who’ve been there in the trenches of the NICU know best. While not every parent of a premature baby wants to hear the same things, the list below contains suggestions from real families for anyone who has ever felt tongue tied around a mom or a dad coping with the sometimes grim realities of prematurity.

We asked our followers to tell us what they wish someone had told them back in the NICU days and here are just some of the answers we received:

They are your babies. Yours. Not the nurses and the doctors. You gave them life and they belong to you. The babies are only in the NICU a short time compared to the years of full and happy lives they have ahead at home with their family. The staff may know a lot about their health but you will love them, your own flesh and blood, forever. Hospitals can save lives. But you are their parent. Don’t allow them to make you feel any less than the center of those babies universe. ~ Elizabeth

Journal..a lot.. and take many many pictures because as scared and unrealistic as that moment may be it is your story and you child’s legacy. In years to come when it’s hard to remember because you have blocked out so many memories..it will be nice to have that resource available. ~ Priscilla

It’s ok not to be ok. It’s ok to tell people the truth. It’s ok if your baby doesn’t catch on to nursing right away. And someday it will seem like it was all a bad dream. ~ Lauren

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8 Things You SHOULD Say to Parents of Preemies

So many people have written variations of posts outlining various things not to say to parents of preemies, and that’s important. We know there is a lot of unintentional insensitivity toward preemie parents. People say some strange things to parents of preemies both in and out of the NICU, and it’s not hard to understand why.

The trials, joys, and sorrows of having a preemie are unique, and prematurity’s rollercoaster ride is something that most people will, thankfully, never experience. It’s not hard to imagine that most folks who say awkward and seemingly rude things to parents of micro-preemies and later-term preemies, too, are simply trying to find something, anything to say to express sympathy, empathy, or their condolences.

What to Say to Parents ofPreemies

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Denise Shares Her Story of Having a 30 Weeker After a 34 Weeker

I was pregnant with my son in 2014 and I can remember it like it was yesterday. He was the first boy on my husbands side of the family so it was very exciting. The weekend before I had my son my husband and I took part one of a two part prenatal class. Luckily he paid attention more than I did because the birthing videos were making me sick.

That Monday when I was getting ready for work my plug came out and he noticed what it was immediately (from the course). We went to labor and delivery and the doctor said I was not in labor but I could stay dilated for a few days. The next morning something was not right. I had a small trickle of water coming out of me so I went to labor and delivery. They told me my water had broken but I was not in labor.

Their plan was to transfer me to another hospital so I can wait a few weeks before my son needed to arrive. That sounded like a good plan because having a premature baby is scary for anyone let alone a first time mom. I got transferred via ambulance and got settled into the room. I met with several doctors, nurses and high risk doctors who all said they were going to try to have me wait a few weeks ( I was 34 weeks at the time). Around 10pm a doctor met with my husband and I and said that they needed to induce me because they were afraid of a risk of infection. Not exactly what we were hoping for but the health of our baby came first.

preemie parent support

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