Hello, my name is Sara, and I am a NICU Mom. (In my head, I’m hearing a chorus of, “Hi, Sara!” in response!) I’ll get back to that in a minute because, contrary to what some might think, I do have an identity outside of my NICU Mom status. I am a native Iowan, the oldest of 4 kids and only girl, and a Christmas baby. My husband, Tim, and I have been married since 2009. As I often say, he came “fully equipped” with four kids from a prior marriage! I am an optometrist by training but haven’t actively seen patients since 2005 when I started working on clinical trials in eye care. I had a travel-intense job where I was on a plane multiple times a week, every week. And then everything changed.
Our NICU Story
Our son, Jacob, was born at 25 weeks gestation weighing 1 lb. 5.5 oz. Needless to say, this was a major suprise! I had Class I HELLP Syndrome (the most severe type) which resulted in Jacob being born via emergency C-section. What I thought was a 2:15 p.m. outpatient check-up for myself turned into the premature birth and 4 1/2 month NICU stay for our son.
Jacob spent 126 days in the NICU during which time he required ventilation for two months, surgery on his heart to correct a patent ductus arteriosis (PDA), nitric oxide, surfactant treatments, multiple blood transfusions, serial eye examinations for retinopathy of prematurity, and much more. There were times we didn’t know if we’d be bringing a baby home with us at all. Thankfully, though, we did.
Home from the NICU
Upon discharge from the NICU, Jacob was on home oxygen until 12 days before his 2nd birthday. At seven months old, he got a g-tube due “failure to thrive.” Jacob has had countless hours of PT, OT, feeding therapy, speech therapy evaluations, and regular dietician consultations. In addition, he continues to be seen by numerous outpatient sub-specialties at the University of Iowa Stead Family Children’s Hospital. Currently Jacob is 8 years old and in 2nd grade. He’s a smart, funny, rambunctious little boy – our miracle boy!
Because of the experience of having a micro-preemie with an extended NICU stay and subsequent need for ongoing medical care, I am passionate about all things related to NICU stays, prematurity, and, especially, parent support in the NICU and beyond. I was asked by the NICU social worker to reach out to two fellow NICU moms during Jacob’s NICU stay and provide support to them as they began their NICU journeys. Since that time, I have become passionate about connecting with NICU parents and serving as a source of support and information.
My Background and Passion Complement Each Other
As I mentioned, I am an optometrist by training and was on faculty in the University of Iowa Department of Ophthalmology from 2000-2005. Since then, I have worked in the biotech/pharmaceutical industry in Medical Affairs, working on clinical trials, giving scientific presentations, providing information and training, and doing some medical writing, among other things. Since Jacob was born, I have been working from home, doing consulting work related to ophthalmology clinical trials and project management.
My healthcare background enables me to “speak the medical language” which so many people find overwhelming while experiencing a hospital stay. Familiarity with the hospital setting and how care is provided has also been an asset in working with NICU families. Since 2011 I have served on the Children’s Hospital Family Advisory Council (FAC), providing input about a wide variety of programs and initiatives, including the design and building of the new Children’s Hospital which opened in 2017.
Since 2012, I have been an admin for a Facebook group for NICU families which has grown to over 1400 members. It has been a joy to see fellow NICU parents connect and support one another! Since 2015, I have given my time at the hospital as a Butterfly Brigade volunteer, an organization I co-founded which provides mom-to-mom support for women on hospital bed rest. All of our volunteers have been on hospital bed rest, had pregnancy complications, had a NICU stay, or some combination of those things. It’s great to be able to provide a listening ear as someone who understands the mixed emotions, the ups and downs, the challenges, the miracles, and more of the NICU.
My Mission
This blog has been in the works (at least in my mind!) for over two years, and I’ve taken the plunge! My hope is that NICU Parent Support is a safe place that provides emotional, informational, and practical support to families during their NICU stay, as they transition to home, and as their NICU children grow up.
Welcome to my corner of the web! Pull up a chair, take a look around, and let me know what kind of content you’d most like to see!