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.