The Preemie Primer – A Book Review

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A triplet mother's review of The Preemie PrimerThe Preemie Primer is a great reference book for parents of multiples, especially triplets and more, who have a high likelihood of spending at least a little time in the NICU.  I read it basically cover to cover when my wife was about 22 weeks pregnant with our triplets.

I’m an information seeker so this book was just what I needed when I was feeling anxious about our little trio arriving early. This book is written by an OB who was pregnant with triplets. She delivered and lost one boy at 22.5 weeks and the other two were born at 26 weeks and had multiple complications. Throughout the book she includes personal anecdotes, which makes it easier to digest this sometimes overwhelming information. Dr. Gunter does a nice job of explaining “medical~ese” in layman terms too.

I think you need to know yourself before deciding if this book is for you. If you have a hypochondriacal streak, then you may want to wait until you know your babies are going to be preemies and then order it on Amazon and just read what is relevant in the moment. If you’re like me and “just want to know” then this is a good book to get up to speed on common preemie medical issues.

The book is organized by time frame. It starts with “The beginning” covering pregnancy and delivery. Then moves on to the bulk of the book with “Your premature baby & the hospital,” giving an in depth look at time in the NICU. This section is organized by body system (lungs, digestive system, etc) and covers normal function as well as common problems and treatments. Part three focuses on the mind-body connection, starting with the emotional roller coaster that parents experience when their babies are in the NICU and discusses some good coping strategies.  We were lucky that our triplets were only in the NICU for a week, but I can still attest to the emotional roller coaster!

There’s a section that’s all about “working the system” to help with navigating the medical, insurance, and government benefits systems and he last two sections cover topics related to issues once you get home and then a final “other things you should know” section.

Overall I found this book to be very useful in preparing for our babies’ stay on the NICU. We’re donating our copy to our NICU for other families to use!  I think it’s a great resource to help parents feel empowered to be advocates for their tiny babies!  You can find a copy on Amazon.com.

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(We Will Never Be) Full-Term

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My boys are almost two, and I’m 32 weeks pregnant with our third son. Over the weekend, I spent some time in L&D. Everything is fine, but to say I had flashbacks to NICU is an understatement. In order to lighten the mood in my own mind, I re-wrote the lyrics to “Royals” (originally by Lourde). So without further ado, here is:

(We Will Never Be) Full-Term

I’ve got fine hair upon my flesh
I cut my teeth on breathing tubes and a blue Soothie
And I’m not proud of my address
In the NICU wing, no nursery envy

And every nurse is like:
De-sat
Jaundice
That was a bad brady
Art line
PICC line
Puttin’ in an NG

Kangaroo care, we’re being snuggled in our dreams

But everybody’s like:
PDA
Caffeine
Bathing in pink basins
Surgeons
Breast pump
Unplanned extubation

We don’t care, medical terms are your affair

And we’ll never be full-term (full-term)
It don’t run in our blood
Mom’s uterus just ain’t for us, now the machines all beep and buzz
Let me be your ruler (ruler)
You can call me preemie
And someday I’ll breathe, I’ll breathe, I’ll breathe, I’ll breathe
Let me live that reality

My twin and I aren’t gonna code
You watch our hearts on the machine when we’re sleeping
And everyone who knows us knows
That we’ll be home soon, give the hospital your money

But every nurse is like:
De-sat
Jaundice
That was a bad brady
Art line
PICC line
Puttin’ in an NG

Kangaroo care, we’re being snuggled in our dreams
But everybody’s like:
PDA
Caffeine
Bathing in pink basins
Surgeons
Breast pump
Unplanned extubation

We don’t care, medical terms are your affair

And we’ll never be full-term (full-term)
It don’t run in our blood
Mom’s uterus just ain’t for us, now the machines all beep and buzz
Let me be your ruler (ruler)
You can call me preemie
And someday I’ll breathe, I’ll breathe, I’ll breathe, I’ll breathe
Let me live that reality

ooh ooh oh ooh
We’re smaller than you ever dreamed
And I’m in love with clothes sized “P”

ooh ooh oh ooh
Life is great in Intensive Care
We’re your full-time love affair

And we’ll never be full-term (full-term)
It don’t run in our blood
Mom’s uterus just ain’t for us, now the machines all beep and buzz
Let me be your ruler (ruler)
You can call me preemie
And someday I’ll breathe, I’ll breathe, I’ll breathe, I’ll breathe
Let me live that reality.

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Toddler Thursday: Preparing at home for the NICU stay

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Categories Childcare, Family, Household and Family Management, NICU, Organization, Singletons, Toddler Thursday, Toddlers1 Comment

prepareAfter finding out I was expecting twins my brain started spinning. How would we fit in our current car? What about bedrooms? How would my 38 year old body handle this pregnancy? After I adjusted to the idea many of my initial worries disappeared, but one didn’t. How would our barely two year old Oliver handle things if our babies had a lengthy NICU stay? I had a history of preterm labor and had had all three of my boys at around 37 weeks.  That’s not very early, but I was worried that my body would kick into labor even earlier while carrying two babies. Sure enough right around 28 weeks I started having contractions and my Dr. put me on Procardia. I quickly realized I would need to prepare Oliver for not only the babies, but also for the time that I’d inevitably end up away from him. To complicate things my mother (who is our primary source of childcare) has a chronic illness that makes it difficult to predict how much help she will be able to provide.  In the event that she became ill at the same time the babies were still in the hospital I’d need to have things ready for someone else (who may not be familiar with our routines) to step in.  Eeeeeeek! No pressure, right?

Since Oliver isn’t in school or mother’s day out he spends the majority of his time at home. I knew that I needed to focus most of my energy on creating an environment that would keep him busy and allow him to be as independent as possible. I also wanted to simplify things so that whoever was caring for the boys wouldn’t have as much to clean and keep up with. The first thing I did was purge the playroom and kids’ rooms of any toys they hadn’t played with in awhile, were broken, or sets that were incomplete. I was brutal and got rid of almost half our toys. I was surprised that the kids never mentioned things were missing. After the clean out I sorted the remaining toys and put half away in a closet so they could be switched out periodically. This served three purposes. It made it easier for the big kids to keep things put away, it kept Oliver interested in his toys, and it kept him from being overwhelmed. By limiting his choices he actually started playing with his toys instead of doing what I call the dump and run (where toddlers pour all the toys onto the floor only to walk away without playing) After our playroom was organized I started on our back yard. Once again I got rid of any toy that was broken or in bad shape. I added new sand and toys to our sand box and made sure we had plenty of bubbles and sidewalk chalk. One addition that worked surprisingly well was a plastic easel. We kept it on the patio and would put paper and paints on it as needed. Oliver enjoyed being able to paint whenever he wanted and my mom loved that clean up was so easy. My husband did a safety check and made sure our fence was secure and the play scape didn’t have any loose nails or splinters. My goal was to make our backyard another place where Oliver could play independently and be safe.

I knew having a schedule would make it easier for Oliver during our NICU stay. Thankfully we had already established a routine and flow to our day (It kept my type A personality happy). As we got closer to the babies coming I typed and printed our routine and added it to our household binder (more on the binder later). The further I got in my pregnancy the more tempting it was to let our schedule slide. I was so tired and achy that I reeeeeaaalllly wanted to throw it out and let Oliver sleep late in the mornings and fall asleep wherever he happened to collapse at night. For the most part I tried really hard to stick to our routine knowing that it would make things better for everyone later.  We started practicing what Oliver should do after we ate (put his plate and cup in the sink), where he should put his dirty clothes, where his shoes were kept (the basket by the door), and how to get to the “approved for Oliver” snacks in the pantry. While helping him learn how to be more independent certainly made things easier for whoever was caring for him I was also hoping it would increase his confidence. Going from being the baby of the family to the middle child of five kids was going to be hard. I hoped knowing what to expect and how things worked in our home would help Oliver find his new place.

Knowing I’d be hard to reach in the hospital I decided to make a reference book for our family. I was worried that there would be a question and nobody would be able to get ahold of me. After looking at several examples on pinterest I decided the household binder was the format I liked best.  Our binder is organized by the topics: schedule, food, school, miscellanious phone numbers, and in case of emergency. The schedule area holds our daily schedule and all our routines are written out. This served almost as a script for our day. For example if my dad wasn’t sure what bedtime or bath time looked like for Oliver he could read about them before hand. The food area holds ideas for breakfasts and lunches, take out numbers, and a grocery list for items we typically need every week. The school tab is full of the bigger boys’ school information (schedule, phone numbers, lunch menu, and teachers contact information). Miscellanious phone numbers included the numbers to our plumber, air conditioner repair company, our pediatrician, and various friends who know the kids and could help if needed. I really thought I was going overboard adding this tab, but it turns out my parents needed it! While the babies were in the NICU our air conditioner went out. August in Texas is brutal and thankfully my parents were able to get it fixed quickly. The emergency tab holds copies of our health insurance card and a generic letter giving my paremts permission to seek medical care for the kids. I also included directions to our pediatrician and the closest hospital. While my parents knew most of the information included in the binder I wasn’t sure who else would be caring for Oliver and the bigger boys. Now that we are home and settled the binder serves as a great resource for our baby sitter.

Rhodes and Laurel were born at 34 weeks and spent two and a half weeks in the NICU. Thankfully Oliver and the bigger boys did beautifully while we were gone. My mom did become ill in the middle of our stay but continued to help out as much as she could.

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Prematurity Awareness Week 2013: In Sum

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Prematurity Awareness Week 2013: How Do You Do It?How Do You Do It? just completed a week of posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues. This week honored November’s Prematurity Awareness Month, led by the March of Dimes.

We thank you for joining us as we shared our experiences, reflected on our journeys, and celebrated our milestones in the name of prematurity awareness.

Want to check out all of the posts?  Want more information on a particular topic? Here is the index of the topics we covered, including…

In sharing, we raise awareness.  And in raising awareness, we hope to lower the incidence of prematurity in minimize its negative outcomes.

Now go and check out last week’s posts!

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Thank You, March of Dimes… Ella and Zoë’s Story

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Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


Ella and Zoë were preemies. They were born a little over 10 weeks early and spent 47 and 57 days in the NICU.

They had many issues to overcome, though not nearly as many as they probably should have had. They were fighters from the get-go, like all preemies are. They had to work hard to be able to do things a full-term baby is easily able to do on its own. They needed a lot of help and were given that help by the most amazing NICU nurses and doctors. They are alive today due to medical advances which were brought about by the research funded by the March of Dimes.

They are now 7 1/2 years old, and you would never be able to tell they were premature, by either looking at them or talking with them. I think Ella and Zoë have quite the story to share, and this week I am joining in with hundreds of other parents and bloggers in the Fight for Preemies to help raise awareness and fight… because babies shouldn’t have to.

Ella and Zoë’s story started many years ago when Tom and I first began our journey of trying to become parents.

During our ‘trying to have a baby’ stage (a stage that lasted many years) we spent a lot of time at doctor’s offices, we had lots of appointments and procedures, we had lots of disappointments. We also learned how to keep trying after many negative pregnancy tests, and we also learned how to move forward after painful losses.

Then we found out I was pregnant again. We got the positive and started celebrating. Cautiously.

I started bleeding at 6 weeks (at 11pm) and we spent that long night together and braced ourselves for more bad news. We were beside ourselves when we saw not one, but TWO hearts beating strongly on the ultrasound screen. We were going to have TWINS!!

Then at almost 12 weeks there was more bleeding, and that’s when we found out Baby A’s placenta (Ella’s) was starting to detach.

That was the beginning of my 8 weeks of bed rest.

At 24 weeks preterm labor started and so did my time in the hospital.

A little over 10 weeks early, due to a really bad case of preeclampsia that turned into the beginning stages of HELLP syndrome — (I gained 19 pounds over the weekend), my doctor decided it was time for us to meet the babies. We were super excited but very nervous that it was too early. On Wednesday, April 19th (29 weeks 6 days) at 6:49 pm, Ella Marie was born. We named her after Tom’s mom, Della Marie, and her name means ‘Light’. She weighed 2 pounds 14 ounces and was 16 inches long. She was perfect.

At 6:51 pm, Zoë Dianne was born. We named her after my mom, Dianne, and her name means ‘Life’. She weighed 3 pounds 5 ounces and was also 16 inches long. She was also perfect.

Ella
Zoë

Even though we were nervous, the c-section went well and was so amazing. Ella, the tiny peanut that she was, came out crying pretty strongly for such a little thing.  Zoë had swallowed more amniotic fluid so her first cries sounded more like a kitten rather than a baby, but to Tom and me hearing both girls make noises (their lungs were working!) was the best sound we’ll probably ever hear in our lifetime.

After the initial assessment by their own team of neonatal doctors and nurses both girls appeared to be overall very healthy and only required room air oxygen to help with their breathing. Hearing that news was such a relief! (Most preemie problems are respiratory related.) Even though they were only almost 30 week gestational babies they were doing so well!

Before they were taken out of the operating room the nurses brought Ella over to me first and then Zoë. Ella had been crying since her grand entrance but stopped when I started talking to her, my heart melted. Because Zoë had swallowed more amniotic fluid her team was in more of a hurry to get her to the Neonatal Intensive Care Unit (NICU), so instead of talking to her I gave her a little kiss on her forehead. It was probably a reflex, but that little sweetie leaned forward and kissed my nose! My heart melted again.

During the first few days of Ella and Zoë’s lives they each had a lot of different things done to them, including IVs (which they did not like, and often pulled right out), feeding tubes, and being attached to monitors for pulse, oxygen content, respiratory and blood pressure. Both had brain ultrasounds done a couple of times, and we were relieved to hear they each had “normal brains” (meaning no bleeding or swelling). The girls did need to pass a few tests before they could come home. They needed to breathe on their own and Ella needed to stop having her apnea spells; they needed to regulate their own body temperatures; and they needed to learn how to suck, swallow and breath, all at the same time.

On the fifth day of Ella and Zoë’s life I was finally well enough to go to the NICU.

It was the first time I remember holding Ella and the first time I actually held Zoë.

My sister was with me and she also had a chance to hold Ella
. . . . and Zoe, too.

And so began our life at our Home Away from Home — the NICU.

Zoe and Ella ~ 2 1/2 weeks old
First time together since their birth.
Zoe with her eyes open.
Ella with her eyes open.
Zoe and Ella at one month old.
Wearing their fairy outfits made to fit a teddy bear.
Ella at 6 weeks old.
Zoe at 6 weeks old.
Ella.
Zoë

It was a ‘one step forward two steps backwards’ type of dance those first few weeks but we were lucky.  Ella and Zoë did really well, especially considering all of the ‘what could have beens’. And we had THE BEST PRIMARY NURSES ever!!

We will always be grateful for the care that Molly,

Cori,

Denise,

and Becca gave our daughters.

Leaving them each night would have been much more difficult it weren’t for those four nurses, as well as all of the other amazing staff that helped take care of our girls.

After 47 days we brought Zoë home!!

Zoë’s first car ride.

It was somewhat bittersweet though as Ella needed to stay in the hospital a bit longer, but the only way we were able to leave Ella was because Nurse Molly was there to hold her for us. Again,we’ll always be so grateful.

Ella recovering from her infection. She was a pretty sick little girl for over a week.

So for 10 days we learned how to parent a single baby at home while also spending time in the NICU helping Ella recuperate from her infection. On day 57 we brought Ella home and FINALLY, all four of us were under one roof!!

We were ready to start the next exciting chapter in our lives . . . A life that included a heart monitor for Ella, a pump, bottles, feed schedule every 3 hours (because both girls couldn’t swallow on their own and needed their milk thickened) that took 45 minutes to accomplish if everything went well . . . and lots of playing, smiles, cuddles and love. It took some time to get into a routine, and we didn’t get a lot of sleep those first few months, but eventually our days were more often less chaotic than chaotic ☺.

Zoë and Ella at 4 1/2 months old.

Ella and Zoë are now 7 1/2 years old in 2nd grade, and are THRIVING.

They love building and creating…

reading anything they they can get their hands on…

hanging out together…

and with their Grama Dianne…

they love animals and bugs…

… and butterflies, too…

they love spending time in the lake…

at the farm…

and at our neighborhood zoo…

These girls are my silly, loving, caring, lovely, smart, fun, helpful, curious, goofballs.

They are my dolly-girls.

Thank you, March of Dimes. We have so much to be thankful for.

MoM to 7 1/2-year old fraternal twin girls, kindergarten teacher Jeremi blogs at Ella and Zoe.  Each of her picture-filled posts radiates the joy she gleans from her two most beautiful gifts.

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The Signs of Premature Labor

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Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


The premature births of all my babies (see full stories here and here) — my singleton, born at 31 weeks, and then my twins, born at 27.5 weeks — obviously affected our family very profoundly.

In addition to the many other hats I wear, I chair the Multiple Births Canada’s Preterm Birth Support Network and work in my local multiples group as a peer support worker.  In these roles I have the opportunity to speak with expectant mothers and fathers, and a big part of my message is to educate them on the signs of preterm labour.

The day you find out you’re having multiple-birth babies is a day filled with excitement, wonder, and even concern about how you’re going to do it. While preparing to have multiples you will be focusing on doubles, triples or more of many big ticket items and you will be very focused on the babies who are on the way. It will be equally important to remember to focus on yourself; get enough sleep, listen to your doctors’ instructions and be fully aware of preterm birth labour symptoms.

When it comes to expecting multiples, you should be prepared for the possible early arrival of your little ones, as multiple-birth babies are more likely to born premature than their singleton friends.

It is my experience, though, after speaking to hundreds of expectant mothers, new mothers and well-experienced mothers alike that the majority just don’t know what the preterm labour symptoms are. So here is a list of a few of the common ones, with a link to a longer list to be aware of:

  • Low, mild backache
  • Menstrual-like cramps
  • Pressure (as though the baby is pushing down)

Read the full list HERE and consider posting this on your fridge as a quiet reminder.  Ensure your spouse/partner and family are fully aware of the preterm labour symptoms as well. Sometimes as moms we can think we are strong and know our bodies, but miss some obvious signs, so our family can monitor our behaviour and ensure we get the help we need if symptoms of preterm labour present themselves.

Maintain an open dialogue with your doctor.  No question or concern is too silly.  While preterm labor is not completely preventable, education and awareness are important keys in working towards a healthy delivery.

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NICU Graduates: A Picture Round-up

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Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


Thank you for joining us this week as we shared our experiences, reflected on our journeys, and celebrated our milestones in the name of prematurity awareness.  Rounding out our series, the HDYDI MoMs are proud to showcase some of our NICU graduates.


Preemies shortly after birth compared to age 7 from hdydi.com
Sadia’s daughters M (top left and on the inside bottom) and J (top right and on the outside bottom) were born at 33 weeks but are now doing more than fine at age 7. They’re dancers, bookworms, pet lovers, Girl Scouts, best friends and the light of Sadia’s life. They read about 3 grades above their age level. M plans to be a restauranteur, astronaut and mother of quadruplets. J intends to be a teacher and dancer.
Preemies grow up strong from hdydi.com
Margie’s boys, Wesley (top row) and Andrew (bottom row) spent two weeks in the NICU after being born via emergency c-section (on their scheduled 38 week scheduled delivery date) due to an undetected blood disorder that caused extreme complications hours before their actual scheduled delivery time. After several blood transfusions each, having a seizure (Andrew) and receiving several rounds of platelets, the boys beat the odds and came home happy and healthy. The photos on the left were taken the day after their birth. After only a quick glimpse in the delivery room, the boys were rush off to receive immediate medical assistance and Margie and her husband were not allowed to see them until the following morning. The entire day seemed surreal, knowing she delivered two babies, not being able to see them and still having a big twin belly. Margie says those first few days were the hardest, scariest and saddest days she’s ever experienced. The photos to the right show the boys in the NICU after most of the wires and tubes had been removed. They are two of Margie’s most treasured photos.
4
Wesley and Andrew just celebrated their 4th birthday and love living life at 100mph! Wesley wants to drive an ambulance someday to help sick people, and Andrew dreams of being an astronaut.
Preemies grow up healthy and strong! from hdydi.com
MandyE’s fraternal twin girls were born at 34 weeks and spent 10 days in the NICU. They will celebrate their fifth birthday in January with their very blessed family.
Angela's triplets were born at 27 weeks and 5 days after a month of hospital bed rest. They weighed a little over 2 pounds each. Carter only lived 49 days and Braden & Tenley came home after 4 and 3 months. They fought through L3/4 brain bleeds, shunts, NEC, seizures, sensory issues, feeding issues and GERD, and still have ongoing therapy. In the end though, Angela feels blessed and is very proud of how far her little preemies have come.
Angela’s triplets were born at 27 weeks and 5 days after a month of hospital bed rest. They weighed a little over 2 pounds each. Carter only lived 49 days and Braden & Tenley came home after 4 and 3 months. They fought through L3/4 brain bleeds, shunts, NEC, seizures, sensory issues, feeding issues and GERD, and still have ongoing therapy. In the end though, Angela feels blessed and is very proud of how far her little preemies have come.

 

Insert caption here
Carolyn’s first son was born at 31 weeks, followed two years later by her twin boys, at 27 weeks.  Now five and three years old, they are her superheroes.
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Paying It Forward: Volunteering in the NICU

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Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


Our twin girls were born six weeks early. We were so blessed that they required minimal assistance, and after 10 days in the NICU, they were ready to come home.

I knew we were very fortunate that our girls were so healthy…but at the time, those 10 days in the NICU seemed like much longer. I remember feeling so helpless, and so confused. I felt like I couldn’t grasp what was happening…was something wrong with me? Why couldn’t I understand?

In addition to the raw emotion, I felt almost embarrassed at the biggest breakdown I had, the day I was discharged from the hospital without my babies. It was one of the hardest experiences of my life.

Fast forward a couple of years, and those NICU days – while still crystal clear in some ways – were far behind me. My girls were healthy and happy, and if anything, the challenges during the girls’ first few days made me even more appreciative of my blessings.

Sometime before the girls’ second birthday, I received a call from the NICU, asking if I would be willing to volunteer as a “support parent”, as part of a new program they were starting.

I tentatively said yes. I felt like it was the “right” thing to do…but – to be completely honest – part of me dreaded facing that environment again.

I was completely engaged at home, singing songs, reading books, and playing endless games of pretend with my amazing girls. I feared that the sights and sounds and smells of the hospital would bring back too many emotions.

For the first year or so, I visited the hospital when they called me, on average about once a month. I’d psyche myself up beforehand, preparing my game face. I’d let myself be reminded of those emotional days of the girls’ early infancy, and then I’d focus on trying to help another family who was dealing with a similar situation.

The visits could be challenging for me, but I always felt like I’d made a positive impact afterwards. (And they reminded me to squeeze my girls extra tightly when I got home.)

Ahead of the girls starting preschool last fall, I talked with the NICU about volunteering more regularly. To once again be completely honest, I was a little bit torn. For the first time in close to four years, I’d finally have some “off” time. Did I really want to spend part of that each week in such an emotionally-charged environment? But again, I felt like it was the “right” thing for me to do.

A year and a half later, I am so thankful I made the call.

Every Tuesday morning, after I drop the girls off with their beloved teachers and friends, I head to the hospital. No longer do I have any nervous anticipation. I see the same nurses who took care of our beautiful girls. I get to know the families who are in for the long haul. And – if I’m lucky – I sometimes get to be among the first to congratulate a new mom.

I do my best to be a good listener, and – when I feel it’s appropriate – to talk about some of our experiences in the NICU. It can be a delicate balance, but I try to respectfully share what I found as the ultimate blessings of this challenging time.

I hope I’m able to help in some small way the families who are currently experiencing the NICU…to validate their feelings…to be a sounding board, and sometimes lend a shoulder.

I read a quote once upon a time, that there is no true act of altruism, and I find that very true. For any help I am able to provide others, it heals my soul, too.

MandyE is mom to fraternal twin girls, now almost five.  She blogs about their adventures and her journey through motherhood at Twin Trials and Triumphs.

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Giving Back: NICU Gratitude

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Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


During the first 2 weeks of my boys’ lives, the NICU was our home-away-from-home. I was aware of the possibility of a NICU stay, just based on a multiple pregnancy being high-risk. We made it to 38 weeks gestation, so what could possibly go wrong?  Our boys decided to throw a wrench in the we’re-just-here-until-we-can-gain-some-weight-and-maintain-our-body-temps NICU experience that I was prepared for. No parent wants their children to require a NICU stay, but if your children end up there, I now know that there is no better place. The care and concern of the neo-natal doctors and NICU nurses was unimaginably authentic and sincere, and they knew how to react to urgent situations in the blink of an eye.  They are skilled in their profession, and skilled in compassion. (Read a little more about my boys’ unexpected NICU stay in the letter I wrote to them on their first birthday.)

For the first two years after the boys were born, my mom and I “went back to give back”.  On their first birthday I baked 100 cupcakes and my mom knitted baby blankets to distribute to the current NICU residents.  On the boys’ second birthday, they went with us to donate 100 infant and preemie handmade hats (again, the crafty work of my mom).  The nurses loved seeing the boys and the families we encountered were grateful for the handmade items, and hopeful that they’d soon be home with their little ones.  Every February, we also attend a fundraiser for our hospital’s NICU which raises thousands of dollars each year.  Absolutely amazing.

Although my mom was prepared for their 3rd and 4th birthdays, I had a difficult enough time returning the first two times.  Although miracles were performed during my boys’ stay, I got extremely emotional as we walked down that long corridor to the NICU with gifts; gifts thanking the medical personnel for allowing me the opportunity to bring my boys home happy and healthy.  If anyone has ever seen me cry, you know it’s not a pretty sight.  I cannot easily contain my emotions.  I just couldn’t go back to the NICU again.  It was just too difficult, and instantly brought back very emotional memories for me.

Fast forward to today.  I have two very happy, very active four year old boys, and am now involved with our local multiples club.  I was ecstatic to hear that our club’s Charity Committee was able to purchase a rocking chair second-hand, and is in the process of having a plaque made for each arm of the chair.  The plaques will dedicate the chair to a local NICU and create name recognition for our club; a club which has been so supportive to new moms-of-multiples in our area.  You don’t even have to be a member of our club to receive and benefit from the plethora of advice our members are always ready and willing to share.  We want to let new moms know that we have ‘been there’, and that we are a strong, local support system that they can turn to.

Any small token of gratitue does not go unnoticed.  Gifts, parental support via volunteering, updates on your NICU graduates…

Do you feel NICU gratitude? What have you done to give back to those that gave so much?

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The Goal of Reaching the NICU Reunion

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Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


Our girls were born at 34 weeks and spent 10 days in the NICU. I knew at the time – on some level – that we were very lucky, and certainly I realize it today.  Still, those 10 days were filled with many emotions, and a whole lot of haze.

I know a lot of the details I’ve blocked, but some things stand out very clearly in my memory. One of the things I remember with great clarity is a hallway exchange I had with another family, whose twin girls were born a week or so before ours. The mom seemed so well-adjusted and optimistic. We exchanged pleasantries, and she said, “I’m already looking forward to the NICU reunion this fall!

I appreciated her outlook, and that little tidbit of information stuck in my mind. A reunion…eight months out…it was something to look forward to. Although it was very tough to appreciate at the time, I logically knew my girls would be long past their NICU days by then. I, too, began to anticipate the weekend after Labor Day.

Throughout the next few months, as I practiced what I’d learned in the NICU…how to feed my babies, how to burp them, how to bathe them…I was looking forward. I couldn’t wait to show off my babies – who by that time would be plump and smiling – to the NICU nurses. I couldn’t wait to show them and to celebrate, “We did it!

I’ve had numerous conversations with my mommy friends who didn’t spend time in the NICU. Several have recounted how they cried and cried when they brought their babies home, feeling like they didn’t know what to do.

While I did my share of crying after my girls got home, it wasn’t because I felt like I didn’t know what to do. I know I have the NICU nurses to thank for that.

Those nurses were there for us, not just punching the clock and doing their job, but wrapping their arms around us figuratively, and at times, literally, during those first critical days as the size of our family abruptly doubled.

They cheered as I changed my first two diapers…they showed me all sorts of tricks for coaxing a premature baby to take a bottle…they affirmed my every “was that a burp?” question…they stood by my side as I gave the girls a bath for the first time.

The environment may have been cold and sterile, but that’s not how I remember our time in the NICU. The nurses were always so reassuring, letting us know the babies would be fine, and so would we. For that, and for so many more things, I will be eternally grateful.

We attend the NICU reunion each year. It is an awesome opportunity to reconnect with the doctors and nurses who were our family those first couple of weeks. They are truly amazing people, and they will always hold such a special place in our hearts.

The first reunion, it was Mommy who was so looking forward to the visit. The next year, when the girls were about 20 months old, I’d worked with them for days to say, “Hi, Miss Michelle,” in greeting our very favorite nurse. It brought tears to her eyes, and mine.

Since then, the girls look forward to the reunion, too. “When are we going to MY hospital, Mommy?” They like to ride the elevator, they like to eat a piece of cake, and they like to see their pictures hanging on the wall outside the nursery, one of a handful of cases who were highlighted as part of a March of Dimes “graduates” wall.

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Headed to our first NICU reunion. We take a picture now every year beforehand…one proud Mommy and her two healthy babies.

If I could rewrite history, would I want to spend those days in the NICU? No. But do I love to take the girls for a visit once a year…to reflect on how far we’ve all come…to try to convey our eternal gratitude in some small way? Absolutely.

Have you revisited the NICU since your babies graduated?

MandyE is mom to fraternal twin girls, now almost five.  She blogs about their adventures, and her journey through motherhood, at Twin Trials and Triumphs.

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