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Spending the Holidays in the NICU

November 25, 2020 by

by Nico Shanel

Almost two years ago today, I gobbled down my Thanksgiving meal but instead of enjoying my usual “I definitely ate too much” nap when I finished, I hopped in my car with my husband and headed to the NICU to see my sweet little one who was born just two months earlier at 24 weeks and 6 days, weighing only 1 little pound. It’s really humbling and quite confusing to watch your baby fight for their life on a day you are supposed to be hyper aware of what you’re thankful for. In fact, that Thanksgiving, my son had contracted Klebsiella pneumonia and was back on the jet ventilator, completely erasing all the progress he had previously made.

In the NICU, you often hear “one step forward, two steps back” and over the course of our 6 month stay, we would hear that a lot from our nurses and doctors. 

On one hand, I was grateful that my bub was alive and fighting strong. But that day, I still couldn’t help but feel jealous of all the new parents who were taking their “I definitely ate too much” nap at home with their new babies (and I would often find myself having other moments of envy towards new moms with healthy babies throughout my sons stay and after).

It was hard for me to really be grateful on that day and many other days because I didn’t understand why any of this was happening. I had a routine pregnancy up until 24 weeks and it seems like everything spiraled out of control quickly and randomly after. Why did I have to be grateful for circumstances I didn’t feel my baby, nor I deserved? 

Back then, I bottled all my frustrations and most of my emotions and just pushed through each day, even more so around the holidays in order to distract myself. Because of this, I would find myself breaking down a lot inside and outside of the NICU. It was hard to just be myself again, but I continuously put on a mask of strength for my baby’s sake while disregarding my mental and sometimes physical health in the process.

I know now that this wasn’t the healthiest way to get through that hard time, but it was what I could do at the time. It’s very easy to be hard on ourselves as humans on a regular day. But throw in having a baby in the hospital along with the holidays quickly approaching, and you have a situation where there can be a lot of emotions and tensions bubbling under the surface. This can leave you vulnerable to more self-judgment. Trust me. I know the feeling. And it’s not always the best feeling.  

There may be many times where hard feelings arise during this time and it will pass just as fast as it came. I wish I could have told myself back then. Just that it’s okay and to be a little easier on myself. There may be days that you are spending precious holidays you are used to spending at home in a NICU that feels cold and foreign. That’s hard enough. You may be feeling disappointed or down. That’s okay. And it’s okay if it’s not okay with you as well. I know that sounds crazy, but the point is that it is important to acknowledge and honor your feelings, no matter what they may be. One day, your baby will be at home with you celebrating the holidays and they deserve a healthy and happy parent who will help them celebrate. 

This holiday season is going to look a little different this year because of COVID, so it is important to stay healthy not only physically but emotionally as well. Try journaling any thoughts you have (that’s what helped me write SUPREEMIE!) so that they don’t stay trapped in your head or your heart. Stay connected if you can virtually with your family and friends. Let them check on you and care for you. You are loved and you deserve to be taken care of too. You and your precious baby in the NICU are doing your very best! Be proud of that and remember that you must take the NICU one day at a time. 

Nico Shanel is a debut children’s author and mother to two preemies. When she’s not mommy-ing, she loves traveling with her family and blogging in her free time. To find a copy of her book SUPREEMIE and other preemie inspired items, go to www.Supreemiebaby.com. 

Categories: Preemie Parent Voices
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Preparing to Leave the NICU: 5 Things Twin Parents Should know

November 17, 2020 by

By Krystal Workman, Inventor of the TwinGo Carrier

Congratulations! Graduation day is just around the corner and leaving the NICU is truly a cause for celebration. For the parents of twins out there, I’d like to share these five things I learned to help you prepare for life after the NICU with twins.

Twins aren’t always released at the same time
When I first learned Twin B would come home before Twin A, my heart sank. Almost immediately guilt set in that one baby would get more of my attention than the other. If you find guilt creeping up too, here’s a perspective change: One-on-one time is a great way to get to know each baby individually. Now that my twins are older–trust me–individual time is truly a gift to twins!

Sleep as much as you can before they graduate!
I received this tip repeatedly from other twin parents but sort of questioned the validity. When I showed up for “my shifts” at the NICU, the nurses seemed to effortlessly move the twin’s schedule right along. I honestly remember thinking “How can this be exhausting?” Rookie mistake! Caring for preemie twins at home is intense, especially if you are doing it alone. So, charge your batteries before it’s GO time!

Set up a Meal Train and stock up your freezer
When your friends and family find out your babies were born early, they likely want to help but won’t know how if they’ve never experienced NICU life. For your eager support network, ask them to do two things: Make one freezer meal and sign up for a Meal Train after the twins come home. If you have 30 people in your network, that is 2 months of meals! Your sleep deprived self will be immensely grateful, so, yes, buy a freezer chest before the twins get home!

Observe the NICU schedule and ask a ton of questions
Most twin parents quickly realize one of the hidden benefits of the NICU is that the babies come home on a sleep/feed schedule–either staggered or synchronized. However, maintaining the schedule takes deliberate thought and preparation. This is where asking tons of questions before leaving the NICU comes into play. The NICU nurses taught me what feeding and sleep cues looked like for each of my babies (and they were surprisingly different!), how to feed and burp efficiently to keep the schedule going, when to swaddle, bathe, and snuggle…I felt like a parent on training wheels!

Get the gear ready!
You might think you’ll have free time when your twins are home to do last minute shopping or assemble a crib, but in the world of twins, you’ll be operating on negative time–if that’s a thing. You’ll enter survival mode where your time will be used only on things that help you and your family make it to the next day. So not only should you get the gear ready before your twins get home, you want to invest in quality gear that empowers you as a parent. In my world, I focused on gear that helped me feed my twins efficiently, helped them sleep safely and helped me bond with my babies.

About the Author
Krystal Workman is the inventor of the TwinGo Carrier, the first ergonomic twin baby carrier. Her invention was born out of personal necessity to care for her own twins, and as a way to emotionally heal from the touchless first few days in the NICU. Today, TwinGo has helped more than 10,000 families around the world keep their babies close!

Categories: Preemie Parent Voices
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My Story of Grace

November 13, 2020 by

by Jessica Colon Mayoset

Grace Kmillah came into this world on 07/23/2020 at 3:05am.  She weighed 2.7lb and was 14 inch. She was so tiny and fragile I though she wouldn’t make it. The year before I had a miscarriage, so we didn’t want to get our hopes up. I have been waiting for her for over 12 years. You can read my story at https://thewhenlife.com/blogs/news/when-life-i-have-now-seen-you-lordfbclid=IwAR0TV4SWsWVZcf0Cl5AmK9wI4m5Ud4P2B8S5e5leBznCbho8Fny7Cmr-BaI

God has been amazing even though Grace Kmillah was in NICU for 59 days we were finally able to bring her home. 

It will be 2 months since God allowed us to see Grace with our eyes. Holy God… the scariest but most happiest day! We are so grateful!  We have seen Gods hand in all of this process. Only his Grace has sustained us! It has been hard… very hard not only emotionally but physically.  I know how you feel I have been there too. I sometimes don’t know where we get the energy from, especially my husband with everything he has to do. I then remember that God has our backs. I have literally felt as if I am running a marathon. I can see the finish line but further and further each time, then suddenly someone picks me up, carries me and finishes the race for me. We thank God for his love, his mercies and his Grace which we don’t deserve. 
Days at the hospital can be and will be overwhelming. It’s not what you picture for your child. Our staff at Winnie Palmer Hospital in Orlando were amazing (take advantage of that while you can). We still have a long road ahead, but I just want you to know that it gets better, slowly but better. Trust that perhaps you have been created for such a time like this (Esther 4:14). Be strong, have faith!

Jessica Colon Mayset lives in Florida with her daughter, husband and dog Chase. She has her own blog – Dulce Redencion that she shares regularly.

Categories: Preemie Parent Voices
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Preemie Strong

October 6, 2020 by

by Tynisha Doe

“You never know how strong you are, until being strong is your only choice.” – Bob Marley

 July 10th,2015, I was rushed to the hospital where my husband and I learned that my daughter would be coming into the world earlier than we had anticipated. Originally due on October 10th of that year, we were nearly 3 months away from when she was supposed to come. I was terrified. I felt guilty, heartbroken, and defeated all at once.

Three days later we welcomed our sweet baby girl Yvonne. After waking from the anesthesia, our doctor informed me that we had one strong little girl. He told us when she came out, Yvonne was determined to breathe on her own. But despite her willpower, we still endure the many scary, life changing experience that many of us face in NICU. It was daunting. Monitors, alarms, wiring, tubing, transfusions, heat lamps to name a few.

That moment changes you. You realize that you don’t have the choice to protect your child the way a “typical” parent would. The protection of my daughter was in the hands of trusted medical professional while I saw at her bedside. It certainly was not the introduction into parenthood that I had envisioned.  

It was nearly 13 weeks that we spent in the NICU and transition units. Yvonne required two blood transfusion during her stay. After watching my little miracle grow and become strong day after day, we finally took her home just 2 weeks shy of her due date. 

Yvonne is now 5 and I can’t believe how far she has come. Overcoming obstacles that many kids her age haven’t had to face. She is arguably the strongest person that I know and if there is a doubt that I can’t make it through the day, she gives me the strength to keep going. 

Recently we have welcomed another child, a boy, who is 9 months old. He too was a very close call to the NICU. Again, I was terrified. It brought me back to the feelings I had experience when I had my daughter- the alarms, the wires, the tubing. I was overwhelmed with the thought of going through this again. We once again began to prepare for the worst. But with exceptional care from our doctors, we made it to full term. 

Now that our lives feel whole with 4 happy children, we have decided now is the time to give back. My love for crafting led me to open my own business-one that I can combine both creativity and passion. I chose to focus on baby apparel and accessories because I wanted to design and provide families of preemies more options than what is out there today. Just shopping for something adorable for your baby to wear can give a parent a little bit of excitement during a difficult time. We wanted this business to be one that we could give back to our fellow NICU/Preemie families. We couldn’t think of a more rewarding organization than one that is so near and dear to our hearts.

I had longed for a community of support when I was facing the NICU experience. I felt alone, with no one to relate to how I was feeling. The Graham’s foundation is an incredible organization that I wish I had known about when I was in the NICU. The level of support and kindness this community shows others is uplifting. We are so excited and honored to partner with the Graham’s foundation as we launch our business. We hope that you will love our designs and find something to make you smile, give you hope, and bring a little joy during a time of struggle. We support you and we are with you. “Live a life worthy of the calling you have received.”- Ephesians 4:1 

About our Guest Blogger: Tynisha Doe is a mom of 4 and has opened a children’s boutique – 4 Little Birds. Though it has been 5 years, the memories of their NICU journey has impacted them. As a family, they wanted a way to support other families going though similar difficult times while in the NICU. Their mission is to help give back to non profit foundations and organizations that support NICU families, such as Graham’s Foundation. You can check out their online boutique at: http://www.4littlebirdsboutique.com/

Categories: Parenting Preemies, Preemie Parent Voices, Supporting Preemie Parents
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My NICU Story – Miracles Do Happen!

September 9, 2020 by

by Monique Matheson

Finding out I was pregnant was a bit of a surprise, but I soon came around to the idea and for my first trimester, everything seemed to be going well nothing at all was flagged and I was feeling really well.

But as I was having my 20-week scan, the doctor was really quiet and I quickly realised something was wrong. I was told my son was dangerously small and that I could lose him at any moment, so I might want to consider having an abortion. The word ‘abortion’ came as a huge shock to me. I had just seen my baby moving around I assumed happily so I felt that I couldn’t consider that as an option.

I was told my baby, who weighed just 186g, had Intrauterine Growth Restriction (IUGR) because my placenta wasn’t delivering enough nutrition. I went home disheartened and really upset. But tried to stay positive and focused on trying to give my baby all the nourishment he needed. I’m not sure if it was the high protein diet I put myself on which made the difference, but by 24 weeks, he was 339g and five weeks after that, he was over 600g.

At 29 weeks, when I was due to have yet another scan, I noticed my baby was moving less than usual, but I was too scared to tell the doctor when she asked. The scan showed he wasn’t that active without me even saying though, and the doctor said my baby needed to be delivered the next day.

I had to be transferred to Sunderland hospital, over two and a half hours away, because there weren’t any free incubators. I suddenly became very anxious as I didn’t know anyone there and I had never been there before but I was soon very happy to have been transferred there because I had never met so many lovely people in one place. 

At 7am, I went into the operating theatre with my mum. I had become so used to hearing bad news throughout my pregnancy that I was preparing myself for the worst. But then I heard a little cry, and I can’t describe how happy I felt to know he was alive.

I didn’t have much chance to see him because he had to go straight to intensive care. I was given a picture of my baby while I was recovering which made me feel both happy and sad at the same time. I was happy that he was finally here but it broke my heart to see him with an oxygen mask on: I had just given birth to a baby and I didn’t even know what he properly looked like. 

When I got to see him, he was the tiniest human I had ever seen, weighing just 1lb 10oz. And then the next day, when I went down to the unit, I could see his whole face – he didn’t have an oxygen mask on! The nurse told me that overnight he had been sucking on his oxygen tube like a dummy and his numbers were sky high, so they realised he didn’t need it. I couldn’t believe it – he had only been in the world for a few hours and he was already showing me so much strength, inspiring me to be strong too.

Being able to do his cares made such a difference. Just giving him a quick wash with cotton wool and swabbing his mouth made me feel like I was actually needed. He was so small that when it came to changing his nappy, I only needed to use my little fingers to lift up his legs. At first, I was really nervous because I was scared I might hurt him. But I would definitely encourage other parents to embrace every chance to be as involved as possible and not let fear get in the way because it really helped me to feel like a mum.

Similarly, if I could go back, I would tell myself not to be so stressed about the fact that I couldn’t breastfeed him. In hindsight, I can see that it was outside of my control, so there was no point in feeling guilty, especially because my milk did come in eventually. 

After eight days, we were transferred back to my local hospital in Leeds. I was anxious about having to get to know a new unit and new staff. But when I arrived and saw him there, he had been dressed in a vest and it made me so happy to see him in proper clothes for the first time and not just in a nappy. 

It felt like a step back when he was put back onto oxygen. Suddenly, there was a constant beep, beep, beep from his oxygen alarms. I had been quite naïve, thinking he would just keep getting better and better. I realised I had to take one day at a time,so I repeated a mantra to myself: ‘not every day will be the same’ to stop myself becoming too disheartened.

Two and a half months in, we had to transfer hospitals again when I moved back in with my parents. So it was yet another unit and another set of nurses to get to know. By this point, I was desperate to go home, yearning for a day when I could just be in my pyjamas.

But then, when it came to discussing my son being discharged on oxygen, I wanted my son to stay on the unit. It took a while to learn how to put it on and adjust the levels, but once I did some research and found out that it isn’t uncommon for premature babies to come home on oxygen, I felt more confident.

I was so grateful for having been involved with all his cares when it was time to come home.  While spending a night ‘rooming in’ at the hospital with him, I quickly realised there was a difference between feeding him all day and then getting a full night’s sleep at home to being with him all day and all night. I didn’t know who he was during the night. 

But as much as waking up three times to feed him was a shock to the system, it also felt just as it should be, like I was having the experience I was meant to have had from day one. I had been a mum for months by this point, but those night-time feeds were the final puzzle piece to fully feeling like one. 

Monique Matheson lives in the UK and has a YouTube channel; Independent_Mama_Journals where she talks about her experience having her preemie and his IUGR diagnosis.
To Follow and subscribe to her channel: https://www.youtube.com/channel/UCW-MgVaV_kuN9VdGiucUH4g

Categories: Life in the NICU, Preemie Issues
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Our Preemie Story

July 31, 2020 by

By Aanchal Singhal and Pallavi Singhal

One or two,

Who knew

The desire for one,

Accidently led to two.

Not just sisters, or fraternal siblings,

But the first set of identical twins recorded in our family history.

Our parents anticipated for one,

But instead received two.

At 33 weeks we were ready to make our debut.

With a rush to enter this world,

we defied all odds

and set a chain of events, 

who would have thought.

Our bond is unbreakable,

bringing along double joy and double the trouble.

Being a preemie came with uncertainties and unknowns,

but we braved through the storm head on.

As we remained in the NICU growing stronger each day,

the nurses showered us with love and helped us with our stay.

As preemies we are born fighters,

paving a path while teaching others.

Our preemie story is quite interesting and brings along a rollercoaster of emotions, so hop on, fasten your seatbelts and join us on this ride. 

I guess our journey started the day our mom found out she was pregnant. Our mom’s pregnancy was full of complications as we were no easy set of twins to please. In fact, we gave our mom a lot of trouble while we were in utero. The main complication was caused by the fact that Aanchal was considered the donor twin. This means that all the nutrients that she was receiving was being handed down to Pallavi. As Aanchal shrunk, Pallavi grew healthier, and our mom was faced with a difficult situation at hand. Despite the Perinatologist and the high risk pregnancy team of doctors constantly pressurizing her to abort Aanchal, who according to them would not survive, our parents chose to keep us both and we are glad they made that decision! In essence it was a fight against time, because the longer my mom could keep us in, the better the chance of our survival would be. On the other hand, she had already started to dilate at 29 weeks! With all of the complications that followed, our mom did not give up on us. We were impatiently waiting to see the world and as a surprise we were born prematurely on July 2nd. We were born at 33 weeks and severely underweight. Aanchal was 1.5 pounds and Pallavi was 2 pounds. Immediately after birth we were rushed to the NICU and stayed in there for 18-22 days. 

Home after a long stay in the NICU

Even though we defied all odds of survival, we had our fair share of health scares. From being rushed to the ER with Croup, to receiving painful RSV shots, to frequent vision checkups and doctor appointments. Although these health issues were prevalent when were babies, Aanchal’s severely low birth weight has resulted in a variety of health problems like severe allergies and P.O.T.S (Postural Orthostatic Tachycardia Syndrome). Pallavi suffers severe migraine and mild allergies. Even now we have our good days and our bad ones, but we continue to draw inspiration and seek motivation from each other.  Life may have thrown a curveball at us, but we didn’t let that strike us out. We were two choices, either let our prematurity define us, or defy the odds and strive for success. 

The winter break of 2018 will forever remain etched in our memory. We visited our cousins in Michigan and on a whim my parents took us to visit the hospital where we were born. We were ecstatic and did not know what to expect. Delighted we tagged along. We were given the wonderful opportunity to walk through the NICU and have a firsthand encounter with other premature babies! We were speechless when we saw the size of these babies and how the nurses carefully tended to them. A flood of emotions rushed though us as we felt like we were looking back in time. We started to relate to all the pictures that we had seen of our self and we gained a better understanding of what it really meant to be a preemie baby. Some neonates were present with underdeveloped limbs and needed special medical equipment. This was an enlightening moment for both of us because this cause is very close to our hearts. We had always wanted to become Engineers, but this experience allowed us to realize our passion for wanting to help other babies like us by pursuing a path in Biomedical Engineering. It is hard to comprehend the scope and scale of care that goes into tending to a premature baby. One can only grasp what it means until they are able to see and appreciate all the work that is done by the doctors and nurses in the NICU and by the parents/caregivers to ensure that that baby will grow strong and remain healthy. We were blessed with such an eye opening opportunity and we encourage all other preemie kids to give back to their Hospital/NICU in their own ways. 

Thank you Aanchal and Pallavi Singhal for sharing your story! We would love to hear how you are doing in the coming years!

If you are interested in writing for Graham’s Foundation, contact us at blog@grahamsfoundation.org

See all that we offer preemie parents at www.grahamsfoundation.org

Categories: Preemie Voices, Preemies now in School
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There’s this thing called COVID-19 – A Poem

July 24, 2020 by

by Autumn Schwertfeger

Life is still
Life is more simple now and yet it feels more complicated than ever before
The world has changed, it’s evolved into this new reality
All because of COVID-19
The virus took us all by surprise
It turned the world upside down
It made all the soap, toilet paper, and masks disappear
It made the people disappear too
And now the city is a ghost town
There are no cars humming in the once busy streets
There are new laws in place to keep the world intact
Now people must social distance at least six feet apart
Schools are closed
Distance learning from home
Some jobs are lost
Online pick up is the new trend
Netflix is our new best friend
This virus isn’t close to being gone
Everyone is stuck at home in quarantine
And nothing feels the same
We wonder if everything will be okay
Everyone is hiding
Scared to go out
Scared to get sick
Scared to be another statistic
Everyone is fearful and afraid
This virus is here for the long haul
So get yourself prepared
Although our world may feel different with this new norm
We all stand hopeful for a vaccine to help protect our future
What if
We used this time for something different
This is our moment to take a step back from reality
To recognize the little things in life
Find your dreams
And to get your life together
This quarantine may drive us all crazy mad
But keep your chin up
IT WILL GET BETTER
Life will be busy again like it once was before

-Autumn Schwertfeger is the daughter of Jennifer Schwertfeger, author of preemie book – Life with Grace , which can be found on Amazon and Barnes and Noble.com

Categories: COVID, RSV & Preemies, Preemie Parent Voices, Supporting Preemie Parents
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NICU Dads – Thank You for Being Superheroes!

June 20, 2020 by

by Lindsay Nolan

I was scrolling through Instagram at 3 a.m. while my husband, Danny slept on the couch next to me. My internal clock was off a bit; the NICU does that to you. It was about two weeks into our stay at the hospital and I was deciding on which filters to use to enhance my influx of baby photos. I glanced over at Danny and smiled.

He was sprawled out on the unpadded hospital couch, which was half the length of his body. His legs dangled off the end of it and he was covered by a light blanket that did little to keep him warm. His pillow was on the floor – I am guessing that it did not provide a whole lot of support and he deemed it unnecessary sometime during his sleep. My hospital bed was too small for the both of us. Sometimes, when the unpadded hospital couch was a little too unpadded, the oversized chair in the corner was his resting place of choice.

My gaze was suddenly broken by the sound of my phone alarm, a beat we had gotten to know well. It had been three hours since our last diaper change and our baby, Henry’s last tube feeding. Danny slowly got out of bed and said, “I got this, try to get some rest,” as he maneuvered his body to fall out of its stiff positioning. I watched him as he walked down the softly lit hallway to the NICU and as he scrubbed in for several minutes. He called through the intercom for approval of entrance and disappeared into the room.

I saw Danny again three hours later after my alarm signaled for the next feeding. He was sitting on the rocking chair in our area of the NICU with Henry’s two-pound body laid out across his bare chest. They were doing skin-to-skin contact, also known as kangaroo care, which, we were later told; our nurses believed really allowed Henry to thrive and helped in meeting his milestones. Danny fought to keep his eyes open but kept his loving gaze on our baby boy.

I took over at that point as Danny kissed me goodbye, so that he could go check in to work for the day.

To the often times unsung superheroes of the NICU, thank you.

Thank you for stepping up for your child and doing what is best for them, even when it takes a toll on your own wellbeing at times.

Thank you for facing these trials with positivity and strength.

Thank you for being involved; for washing breast pump parts, for ordering room service, for talking with the amazing staff that takes care of your family and for being present.

Thank you for not only taking care of our baby, but for me as well.

Thank you for your love.

Lindsay Nolan is mom to Henry and Reece. She has published a book about preemies and her journey – Preemies: A Storybook for Mighty Preemies. Available on Amazon here.

Categories: Fathers of Preemies, Preemie Parent Voices, Supporting Preemie Parents
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A Note from Graham’s Board Member Dr. Mia W. Doron

May 20, 2020 by

Written by MIA W. DORON, M.D.

I believe whole-heartedly in the mission of Graham’s Foundation and am honored to be on the Executive Board.  

From my many years as a practicing neonatologist, and from sharing the pains and joys of my sister’s experience after delivering 27-week twins, I know that parents of preemies feel terrified, overwhelmed, isolated, and confused, and often don’t know where to turn for support. My professional life has been devoted to providing that support. So when I learned of Graham’s Foundation and its vision – dedicated to a world where no parent goes through the journey of prematurity alone – I said, “Yes! Sign me up for that!”  

Graham’s Foundation has all the pieces in place to achieve that vision:  beautiful care packages for parents filled with useful items and information; empathetic and knowledgeable peer mentors to provide on-going one-on-one support; a tremendous all-round resource in the MyPreemie app to guide families through the chaos of an early birth and hospitalization, through the excitement and anxieties of homecoming and the first few years of their preemie’s life; a large and engaged on-line community; and a staff always striving for excellence. 

In the next 10 years, Graham’s Foundation aims to have a presence in every hospital NICU, so all parents and medical providers are aware of its services, and no one with a premature baby has to travel that road alone.     

NOTES ON THE MyPREEMIE APP AND FEEDING TRACKER

The MyPreemie app came about after my co-authors and I finished writing the 2nd edition of PREEMIES: The Essential Guide for Parents of Premature Babies. Cell phones were still fairly new then, and were not allowed in many NICU’s for fear the signal would interfere with monitoring equipment. But we realized they were quickly becoming the tool young people turned to for information of all kinds, to connect with others, and to help organize their lives. 

We saw a lot of parenting apps for full-term babies, but none for preemies. These apps not only did not meet the needs of parents of premature babies, but their information could actually be wrong if applied to a preemie, and they could make parents feel bad because they weren’t able to participate in the ordinary events of babyhood and parenthood those apps were celebrating. 

So we created an app to guide parents through the experience of prematurity. MyPreemie puts relevant medical information at parents’ fingertips; identifies and prompts them to record significant events that are specific to premature babies; normalizes the turbulent emotions and unfamiliar steps from an early birth, through hospitalization, through the transition home and a preemie’s early years; provides a quick and easy way to keep friends and family informed; makes order out of chaos by giving sample questions to ask medical staff and provides tables and graphs to track a baby’s progress; brings color and warmth to the sterile environment of the NICU with beautifully hand-drawn app pages; and more. 

We are continually trying to improve MyPreemie. For example, we translated the app into Spanish, and are working on a Chinese version, to reach and help more parents. In a few days we will be introducing a Feeding Tracker, with entries aimed at logging the particular events, issues, and milestones in a premature baby’s feeding journey. These are quite different from the average full term baby’s, and are not easily or adequately tracked with the baby feeding apps that are currently available. We are grateful that MyPreemie has been downloaded by tens of thousands of people around the world, and sincerely hope it is making one of life’s most trying and traumatic times a little easier.        

-Dr. Doron is a neonatologist, co-author of the book, Preemies: the Essential Guide for Parents of Premature Babies, and co-creator of the MyPreemie app. –

Categories: News, Supporting Preemie Parents
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Social Distancing & the Village

April 21, 2020 by

by Kristina Mulligan

This world is in scary times as we deal with a global pandemic. COVID-19 is causing fear in many and panic in others. In some way, however, we all feel the anxiety – and possibly the soreness of dry hands. Social distancing and isolation has become the way of life for many, and those that are a bit more “adventurous” are still navigating cancelled events (on their part or society’s) and having to go to work in a world that’s partially shut down. It’s uncharted territory for so many but, as a preemie parent, a lot of these precautions are a part of a normal season. 

I have often been told that the voluntary quarantine that we endure each year since Flynn’s birth is “unnecessary.” I’ve heard unkind words about my “helicopter parenting” and “over-reacting,” that I’m “living in fear” and that “kids need exposure to germs to thrive.” When I wash my hands countless times a day, keep hand sanitizer all over the place, and sanitize my phone, I’ve been called “paranoid” and a “germaphobe.” I can take all that, though, it doesn’t hurt more than it would to have my son’s fragile health compromised. I stand by our decision to self-isolate every year, not because I’m terrified of another hospital stay (though that does play a role) or that I believe the world is only full of sickness and germs. I believe in it for the same reason that your family is doing it due to COVID-19: you want to protect your family. The feelings that you’re having in this moment – fear, uncertainty, confusion, panic – I am no stranger to them.

I say this not with the tone of “I TOLD YOU SO,” instead with one of, “I’ve been here. We’ll get through this.” I’m not insinuating the plight of one family is equal to a global crisis, but up until this point, we have a track record of being okay and standing together, even through all the fear. The same that you are feeling right now. In a time like this, social distancing is important not only for your sake, but for the health of those around you – your neighbors, your friends, the medical community. It’s not a time to panic, hoard, and think only about yourself. Remember that the community as a whole and sticking together (from afar) is equally important as your individual well-being. It takes a village to tackle big things like COVID-19. Be a part of the village, not a part of the problem.

Kristina Mulligan is mom to preemie Flynn and a Parent Preemie Mentor for Graham’s Foundation. She has a blog she posts regularly, “Once In A Mulligan”.
https://www.oneinamulligan.com

Categories: Life After NICU, Life in the NICU, Parenting Preemies, Preemie Parent Voices, Social Distancing with a Preemie, Supporting Preemie Parents
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