|
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. -Ali "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. |
RSS Feed