We remain forever grateful to the great doctors and nurses for saving Lily and Aidan, and would like to help other babies now that have, or will share their experiences.
~ Jennifer Driscoll, The Lily's Hope Foundation
I am excited to share my interview with Jennifer from The Lily's Hope Foundation. The work they are doing is amazing and much needed! Make sure to connect and support on Facebook, Instagram, LinkedIn, and Twitter.
Tell us your story and how Lily's Hope began.
The Lily’s Hope Foundation was started in honor of our daughter, Lilian Hope, who was born 7 weeks premature, only 2 lbs. 12 oz. and 15 inches long in July 2007. She was born early because of preeclampsia and a placental abruption; small for 33 weeks gestational age. She almost didn’t make it through her first day of life, but thanks to the amazing doctors and nurses at Lehigh Valley Hospital, they saved her life. She was on a ventilator and oscillator for 7 days, had a chest tube, multiple blood transfusions, and spent almost 1 month in the NICU. Later she had speech and physical therapies. Lily struggled with gastrointestinal issues, failure to thrive, had surgery and saw specialists at Children’s Hospital of Philadelphia at age 5.
Additionally our son, Aidan Patrick, who was born October 2013, 3 weeks premature at 4 bs. 11 oz and 18 1/2 inches long. He had gastrointestinal and pulmonary issues like Lily, as well as severe allergies and asthma due to his prematurity, and sees specialists at Children’s Hospital in Philadelphia. He also went through early intervention also for physical and speech therapy like Lily. Lily and Aidan had very rough beginnings, but with their strength, wonderful doctors, hope & prayers, they were able to rise above it all. We remain forever grateful to the great doctors and nurses for saving Lily and Aidan, and would like to help other babies now that have, or will share their experiences.
Immediately upon Lily’s birth, we felt compelled to give back for what we had been blessed with. Given the surprise and inability to anticipate premature birth, we saw a need to help families like us that didn’t have the time or resources to prepare for their child’s early arrival. Additionally, premature babies may have special needs such as specific car seats for infants under 5 pounds, special clothing with buttons and Velcro for cords and IV’s, and much more. These additional needs can be hard to find and very expensive in a short amount of time. As we reflected on the needs of families who shared experiences like ours, we wanted to establish the Lily’s Hope Foundation to provide resources for premature babies and their families.
In 2013, the Lily’s Hope Foundation officially became a 501(c)(3) nonprofit organization. Our main goal is to help families that are in the NICU and to help make the transition home a little easier. We do this by providing families with essential items since they have been unable to prepare for their child’s early arrival. Our Packages of Hope are Transition Home, Hospital, Emergency Needs as well as Sibling Care Packages. Our families are referred to us by word of mouth, or by case managers, hospital staff, doctors and nurses from hospitals we support.
What kind of impact do you hope that your organization can have?
Our goal is to answer the emergency needs of families with premature babies by providing them with basic needs supplies and/or special medical equipment. When a child is born prematurely, the family goes through immense pressure to help care for the baby. There is reduced income, increased transportation costs because of traveling to and from hospitals, increased medical bills, increased daycare/babysitting costs, and more. These pressures in addition to the premature baby's new, urgent and unexpected needs adds to the difficulty in finding specific personal care items, clothes, food, and medicines. Our support helps to reduce these stresses. We strive to provide families with physical support for their immediate use to provide stability during a challenging time. We want to alleviate the stress and allow the families to focus on the health of their fragile newborns.
What inspires you to keep helping families dealing with prematurity?
Lily and Aidan, of course, inspired us to start Lily's Hope Foundation. It was only a few weeks after Lily was born when I had the idea to start LHF. We had an amazing support system around us setting up our crib and nursery, grocery shopping for us, watching our dog, cooking and just being there with support. I felt so blessed with what we had been given that I had to give back and provide the same love and support that we received to those that needed it. Also, our families continue to be a source of inspiration for us. We receive letters, emails, messages and often photos of their little ones in the NICU and even a few years later. It means so much for these families to trust us enough to share their story and testimonials in their most vulnerable times, but hopefully have gained so much by being a part of Lily's Hope Foundation. And now, they have become a part of the Foundation's family and a story of hope and impact.
How can someone help support your mission and organization?
You can make monetary donations here, or shop from our Amazon charity list.
We are always looking for volunteers to assist us with diaper drives, fundraisers, shopping, deliveries to families, and more.
Purchase merch from our Etsy store.
I just could not imagine that my tiny daughter who I loved so much, who had this larger than life spirit, was actually gone. I also knew that her spirit and her memory had to live on.
~Michelle Valiukenas, The Colette Louise Tisdahl Foundation
I am excited to share my interview with Michelle from The Colette Louise Tisdahl Foundation. The work they are doing is amazing and much needed! Make sure you connect and support her foundation on Facebook, Instagram, LinkedIn, and Twitter.
Tell us your story and how the Colette Louise Tisdahl Foundation began.
My husband Mark and I struggled with infertility, ultimately going through IVF. We got pregnant on our first round of IVF and then subsequently miscarried weeks later. On our third round of IVF, we got pregnant with our daughter Colette. We were excited, nervous, and the pregnancy went along well (besides my constant all-day morning sickness). At 21 weeks pregnant, a standard OB appointment found my blood pressure at 188/110, a total shock to me since that day had been the first day I had felt really good during my pregnancy. My OB sent me to the hospital where I was admitted with a diagnosis of severe preeclampsia and told I would be in the hospital until I delivered. It felt like our whole world had turned upside down in an instant. It was early May, I was not due until September 7, and did not have the kind of leave from work that this stay required. It became obvious quickly that our two-income household was going down to one-income. I was blessed that we could sustain that financial blow, but could not help thinking of how many other families would be decimated by that, at a time when all the medical advice is to reduce stress. After being in the hospital for a day or two, I told my husband we have to do something about this problem. I spent a little over three weeks in the hospital before the doctors recommended delivery. Colette was born May 23, 2018 at 24 weeks and 5 days. The doctors and nurses all repeatedly told us that we would not hear her because she was too little to cry. But, when she entered the world and the doctors told us it was a girl, we then heard this tiny, but powerful squeak and I asked, was that her? Everyone was amazed and said, yeah, that was her. I knew then that this was of course my badass daughter who was going to change the world. Colette continued to defy all the odds for those first few days and while NICU was of course a roller coaster of yay she's doing so well, to oh, no, things aren't good, she had this spirit and energy that was so much bigger than what her tiny body could hold. After nine days in the NICU, Colette's tiny body gave out and we held her in our arms for the first time as she died. I was lost after Colette died, I just could not imagine that my tiny daughter who I loved so much, who had this larger than life spirit, was actually gone. I also knew that her spirit and her memory had to live on. In the midst of grief, I needed something to turn those emotions and energy into and created The Colette Louise Tisdahl Foundation. We launched on Colette's due date, September 7, 2018, and as of the end of February 2021, we have helped more than 550 families in 39 states, giving away more than $600,000 in assistance.
What kind of impact do you hope that your organization can have?
I hope that families going through crisis have just a little bit of relief and some of their many stresses are relieved. I also think that having had the experiences of infertility, pregnancy complications, NICU stays, and loss means I can relate to these families on a deeply personal level and therefore, can be a sounding board that understands what it is like to be a parent in these situations. On a greater, broader level, I hope that we can advocate for broad social change, to work with so many countless colleagues, friends, and like-minded strangers who do not accept the world as it is. Our work and the lives of so many families would be widely different if policies like paid family leave for all, subsidized childcare, better working schedules from employers and a society that respects and supports parents, were the norm and not the exception. I also think that if we truly confronted issues of racism, sexism, and classism in our institutions, particularly in the medical community, we would greatly change the world so that women and babies of color were not more at risk of complications, prematurity, severe medical conditions, or even death.
What is the biggest concern facing your clients today?
The biggest concern is survival. All of us as parents have challenges every day we are parenting, but for parents dealing with health concerns personally and/or for our children and for parents grieving their child's losses, it is even more difficult. When we add on the financial burdens that parents have as a result of the crisis, such as increased transportation costs, the need for medical equipment, for childcare, etc., along with loss of income either entirely or partially, these parents so often find themselves struggling on all fronts.
What inspires you to keep advocating for families in crisis?
Colette. Every day, I parent her through this organization and as all moms know, we never have a day off from being a mom. I knew when I started this that I could not let Colette's life be in vain and that I did not want her story to be something whispered among those who knew of our loss and hidden from everyone else. Few things make me happier than the fact that so many families utter Colette's name every day and keep her name and her power of her memory and life close to their hearts.
How can someone help support your mission and organization?
We of course are always looking for financial assistance which allows us to help more families and to help families more deeply. If you are financially able, we would invite you to our website: www.colettelouise.com to join our mission and help families in crisis. Additionally, we learn so much from each other and our stories and experiences, so I would invite parents and providers to consider guest blogging or being interviewed by us. If interested, please email me at firstname.lastname@example.org. Finally, share what we post, what we do with others so that we all learn and support families in crisis.
You know your baby better than anyone. Speak up, please. They need you!
~ Carley Guill, For the Littlest
I'm so excited to share my interview with Carley Guill from For The Littlest. It was great to get to know more about her and her amazing NICU advocacy work. Make sure you check out her blog and connect with her on Instagram. ~ Ali
How Did For The Littlest begin?
When I was ten years old, my little sister was born prematurely with an obstructed bowel. My family spent 80 days with her as she battled through the NICU, surgery, feeding tubes, ostomies, and constantly beeping IV pumps. It was so foreign to me, but it became so formative. I’ll never forget my mom telling me that there are sick babies that only get held by the nurses, because their families never come; there are babies that get the private room in the back because they’re so sick; there are parents that can only see their babies once a week because the whole region gets transferred here and they can’t pick up and live upwards of two hours away while their baby’s life hangs in the balance. I took what my mom told me and ran with it, because it touched my heart and bothered me at the same time. That's how For the Littlest was born! Though there were good things and bad things about my experience, the NICU is full of miracles, and I want people to know that there are little warriors out there who need advocates to demonstrate awareness and to fight for them. For the Littlest seeks to spark hearts for NICU advocacy, because we have the power to treat these babies and give their families hope.
What do you want people to know about life in a NICU? What are the biggest misconceptions about NICU babies?
I want people to know that it isn't all bad behind those doors. So often there are nurses and doctors who genuinely love on these babies and care for them so deeply. I know that the thought of such small and seemingly fragile babies is scary for most people, but the NICU can be a force for good in people's lives. It isn't all rainbows and miracles, but goodness, we need to rejoice as much as possible when it is!! The more we know and support our NICU's as advocates, we improve care for babies and we make them feel known and loved.
What kind of impact do you hope that your platform (i.e. writing, speaking, research) can have in the NICU community?
I hope that For the Littlest can spark a fire for NICU advocacy in people's hearts! There are things that have changed in the way things are done since my family's experience, but there are a lot that haven’t. There are still disparities in distribution of qualified NICUs; disparities that force parents and babies to separate and impede healing. There are still some institutions with visitation policies that alienate siblings and family members. But luckily there are still good nurses, good doctors, and generally good people working in these NICUs, so there is still hope too. Through this platform I hope to change the bad things for the better and show off all of the good things!
What inspires you to keep advocating for preemies?
NICU babies and their families give me so much hope. I look at my little sister and how much she's thriving and I remember that one day, she was small and fragile like them too. I have so much hope that there's a light at the end of the tunnel for these babies and these families, and I know that advocacy brings that light even closer.
What are some of your favorite tools, resources, or gadgets that make a NICU journey easier?
My NICU journey was fueled by McNuggets and Top Chef reruns, so I do highly recommend those! Also, I recommend as much of a support system as you can get, even including social media, make it easier - no one is alone!
Cooking with children can be a very rewarding experience in many ways. It can teach little ones very useful and valuable lessons in the kitchen, and it is a true bonding experience, one that might not always be felt in the moment. But without a doubt, it is one that is creating memories that will linger in your child’s mind well into adulthood.
Cooking with kids is something that you either embrace or totally shy away from. In our minds we imagine it to be this wonderful bonding time with our kids, filled with laughter and collaboration to create something special together in the kitchen. The reality, though, might look a little bit different; a messy kitchen, mom telling little kids to wait for directions, ingredients being dropped on the floor, stressing over things not getting done properly, or the potential of someone getting hurt. The majority of time, it may end up being something that we do not look forward to repeating in the near future.
Yes, cooking with children will be messy and a little crazy, but with a little planning we can definitely control how stressful it ends up being for the adult in charge. Cooking with children can be a very rewarding experience in many ways. It can teach little ones very useful and valuable lessons in the kitchen, and it is a true bonding experience, one that might not always be felt in the moment. But without a doubt, it is one that is creating memories that will linger in your child’s mind well into adulthood.
Our kids enjoy helping in the kitchen, and they benefit by learning an array of lessons from getting involved in this activity. Lessons can range from enhancing fine motor skills and teaching kids practical life lessons in reading, math, and organizational skills. It’s also a way for them to work on their creativity and independence. We like to give them input on what they want to cook so they have a voice, but it is also important to include them in the process of cleaning up, so they can see and practice the cooking process in its entirety. Cooking together gives you the perfect opportunity to remind your kids about the importance of hand washing and good hygiene when dealing with food.
Below we compiled a list of some skills that kids from different ages can learn from being involved in cooking activities.
Preschool aged kids:
The benefits of involving your kids in cooking activities far outweigh the stress. With a little bit of planning and a few helpful tips and tricks, you will be able to enjoy the process as much as your littles ones do.
Kid’s Choice 2 Egg Omelet
(Serves 4; Ready in 45 minutes)
4 teaspoons milk
1 cup cheese, shredded
1 cup ham, cooked and diced
1 cup spinach, chopped
1 cup mushrooms, diced
1 tomato, diced
1 bell pepper (any color), seeded and diced
Salt & pepper to taste
4 teaspoons olive oil
Start by chopping all the veggies and ham, and shredding the cheese. Arrange the toppings (ham, cheese, vegetables) in small, individual bowls, so they are ready to add to the omelet. In a small bowl, beat 2 eggs with 1 teaspoon of milk, and a pinch of salt and pepper until the yolks and whites are thoroughly combined.
Heat 1 teaspoon of olive oil in a nonstick skillet over medium heat. Add the beaten egg mixture to the skillet, making sure the egg spreads out in one even layer across the pan. Sprinkle ¼ of the meat, cheese, and veggies onto the omelet. Let the omelet cook for 2-3 minutes or until the edges are cooked and the center is slightly set. Fold the omelet in half and cook for another minute or until cooked through. Sprinkle cheese on top, if desired, and serve immediately.
Using the steps above, continue with the remaining ingredients to make 3 more omelets. Enjoy!
Note: Sauté veggies ahead of time for a softer consistency.
I'm so excited to share my interview with fellow preemie parent Jamie C. Johnson with you on her book launch day! You can find her book Strong Faith: Daily Encouragement for Moms and Families of Premature Babies on Amazon.
"As a result of my NICU experience I have become an advocate. I am on a mission to learn about preemie statistics, resources, etc., more specifically around families of color."
~ Jamie C. Johnson
Please share your NICU journey.
I gave birth to my son Caleb on September 28, 2018 via emergency c-section. He was delivered at 32 weeks, weighing 4lbs 0.4oz. He stayed in the NICU for 49 days. Caleb is my first child. I dealt with a rollercoaster of emotions as I had no one to talk to about the preemie/NICU experience. Caleb had his ups and downs with weight, his heart rate & his breathing. It was hard to find a way to feed him and he not have an alarm. I had a difficult time producing milk which was a major blow to my esteem as a mother. I felt pressure and guilt from the nurses as they kept asking about when I was bringing milk or when I did give milk "oh, is that all?" Having to resort to formula was painful. We are vegetarians and we planned to keep things as natural/organic as possible.
Caleb had reflux and would vomit during many feedings. We tried several bottles & nipples. One of the nurses that I absolutely loved shared how some babies responded positively to "thickened feeds" (adding oatmeal to milk). I asked repeatedly to try it and my request was denied. I followed the NICU team's suggestions but I knew it wasn't working. When I told a nurse that it didn't work because Caleb was having bad alarms with me (which he rarely had) I was told that the head of the unit needed to see it not working for herself- which meant more alarms. I felt like they actually wanted him to have alarms. I was so angry that I wasn't respected as a mother. It took having a meeting with the head of the unit for my request to add oatmeal to Caleb's formula to be approved. Once we started it the alarms stopped and he began to gain weight more consistently.
The unresolved feeding issue was what kept Caleb from coming home. He passed all of his tests that were necessary for him to be released. He just needed 3 consecutive days of no alarms. To think that not being listened to as a parent not only delayed my son from coming home but also contributed to the many times his heart rate dropped and his breathing slowed is heart breaking.
What gave you strength while going through the NICU experience?
God was my main source! I prayed so much throughout our NICU journey-believing that Caleb would come home and not have to stay until his original due date. Joshua, my husband was such a rock. He was working the night shift at that time and sacrificed his sleep to ensure I could get to the hospital everyday (I was medically not allowed to drive most of the time as I healed from my c-section). My family & friends were great as well. They held me accountable when needed and even allowed me and supported me during my low days. My mom only missed 1 day at the hospital with me.
I found a song that ministered to me and kept me encouraged. I played it in Caleb's room everyday. I also found a book about an amazing boy named Caleb and read that to my Caleb everyday. I am grateful for technology! Being able to FT family and friends made quiet/lonely times conquerable.
Tell us about your organization, Build You Up Sisters.
Build You Up Sisters was created to provide opportunities for mothers of all walks of life from around the world to connect and support one another through love and sisterhood. We believe in the power of shared experiences to: foster Trust; give Encouragement; develop Relationships; and provide Support. The need for the sisterhood was noticed when our founder, Jamie Johnson became a mother to her amazing son who was born prematurely and was hospitalized for over 40 days. The many experiences she had led her to wonder about those that may not be as fortunate to have the support she did and the desire to connect and support mothers like her. BYU Sisters will soon have a cohort program to help moms become mompreneurs so that they can be financial contributors to their family while being active in their children's lives/education.
What inspired your new book?
While in the NICU I tried to find a book to help me through the process. I couldn't find anything that I could connect to. One day while spending time with Caleb I heard that I would write the book that I was looking for. From then I began writing out our experience and what I did to make it through as a mom of a premature baby.
I’ve also learned that strength is not dependent on one’s size. The toughest person I’ve ever known fit in the palm of my hand.
~Kristina Mulligan, One in a Mulligan
Being a preemie parent does not end when the NICU doors swing closed behind you after discharge. Being a preemie parent doesn’t stop when your child’s due date passes, nor when they turn two and adjusted age is no longer relevant. Parenting a preemie is for the long-term and, in so many ways, the journey never ends.
Prior to becoming a parent, and even long before my struggle with infertility, I had so many notions about what I would be like as a mother. My dream of motherhood began when I received my first doll and I felt that I always just knew what my parenting style would be. I thought that I was so aware of the type of person that I was and would become, and then my son was born at 28 weeks. What is so fascinating about people is that two individuals could share an experience and, while no situation is identical and neither are the persons involved, it will shape them in completely different ways.
Prematurity is something that can only be completely understood by those who experience it firsthand. I’ve felt the gaping hole in my heart each time I left the hospital without my child. I’ve grieved losses, even though our family was one of the lucky ones. I’ve wept over grams gained and lost, and milliliters of painstakingly pumped breastmilk spilled. I was jolted from a life of comfort into one that was so uncertain and traumatic, yet I survived. And I’ve had to quickly turn from quiet and timid to an advocate for someone who doesn’t have a voice.
Just as giving birth to and caring for a preemie is a rollercoaster, so is the evolution of the preemie parent. There are ebbs and flows from the time the baby is born, to discharge, to their first birthday, and beyond. The shift from survival mode to every day life was the most difficult, and I’m still working past the traumas almost three years later, but through this transition I’ve become wiser.
My strength has been pushed, pulled, twisted, and put through the elements, but I made it through. I’m braver than I ever thought I could be.
I’ve also learned that strength is not dependent on one’s size. The toughest person I’ve ever known fit in the palm of my hand.
I’ve lost relationships as I learned the influence of those close to me on my personal mental health and, in turn, the wellbeing of my family.
I have a new respect for my body and what I put on it, in it, and around my home.
I’ve discovered that all messes can be cleaned up, and that life is more fun with a little chaos involved.
I’ve learned that every cause, no matter how small, is worth fighting for. And I found mine.
With small beginnings comes appreciation for what the typical parent believes are little things – each gram gained, every single breath taken, even every dirty diaper. After all that we’ve been through as a family, it’s easy to only focus on the negative, but over time I’ve learned to look at our experience as a gift, not as a punishment. Parenting a preemie alters you forever and I’m far from the mother that I thought I would be, but I choose to believe I’ve been changed for the better. I’ve changed into who I needed to become.
"When I discovered the need, it became my passion. I began to research and design a line of preemie clothing that would genuinely address their unique requirements and sizing."
~Cressie Baerg, Preemie Store
As I sit and write this article for our guest blog post for Ali the founder of Me Two Books, I am struck with the realization that I have been making preemie clothing longer than some of the mother’s that might be reading this blog post have been alive! Some would feel it is time to retire, but when you are doing something you love, why quit?! The question then is asked, "How did you get started making preemie clothing?" "Did you have a preemie?” No, I didn’t have a preemie. Actually, someone I knew in the church I was attending, had a preemie baby, and nobody was able to find any suitable or affordable clothing for it. I told them, "I can make preemie clothes!" You see, I had sewn all my life, from my own clothes to clothing for my 3 children. When I discovered the need, it became my passion. I began to research and design a line of preemie clothing that would genuinely address their unique requirements and sizing.
Of course, I don't personally sew everything we manufacture today! We've far outgrown what I can produce alone. We have a team of great people that manufacture our preemie clothes right here in the USA. We offer our Perfectly Preemie line in 3 sizes - starting at just 1-2.5 pounds. We make many of our items to be as NICU-Friendly as possible, with open shoulders, quick velcro closures providing easy dressing. We also offer fun dresses and playsuits plus we are hoping to add some great outerwear options this next winter, as well as some more fun ideas.
Last fall we acquired the Preemie Store and now have combined our great Perfectly Preemie line to the over 36+ brands carried on the Preemie Store. We want parents to be able to find anything they might need for their little miracles in one place.
Things have changed in so many ways over the 26+ years we have been working with preemie families. The biggest advance has been the internet and the ability to have an online store that is open to parents 24/7. This has been very nice for preemie parents who spend most of their time in the NICU not allowing them time shop at a physical store from 9-5. Most brick and mortar stores carry very little preemie clothing anyway, because preemies are still a small percentage of all live births.
I also now have the privilege of working alongside my daughter, Melissa who was in elementary school when I started. She takes care of all the order fulfillment, customer service, and so much more. It is a real joy to know the stores are in such good hands with someone who has been with me along this beautiful journey as long as I have. She is planning to take over whenever I am ready to retire, the problem is I have no intent at this time! You see I just love what I do. Along with Melissa, my wonderful husband Kevin helps out with all the bookkeeping, and marketing strategy.
We are a small business with a great big heart for preemie families. The best part is hearing back from parents and families with pictures and stories of how having such cute, and easy to use preemie clothing has made a difficult situation so much better!
Check out all the great things offered at Preemie Store today, www.preemiestore.com.