Heidi Indahl

@heidi-indahl | contributor
Heidi Indahl is a mom of eight children (six living, two deceased). One has special needs and another was a mighty preemie. When she isn’t running to appointments, filling out paperwork, paying bills and playing therapist, she enjoys hiking with her family, reading a good book and anything involving yarn. She blogs about faith, family, infant loss, and homeschool at Work and Play, Day by Day and is also a regular columnist on the Family Faith Formation Blog at Peanut Butter & Grace publishing (pbgrace.com).
Heidi Indahl

NICU Reunion: Reasons I'm Glad We Went

Not long after our son was discharged from the hospital after his short NICU stay, I received a little card in the mail inviting us to attend an annual NICU reunion. I didn’t give it too much thought in the middle of our busy life and quickly scribbled off a yes and slipped the RSVP back in the mail. I jotted a note on my calendar and didn’t think about it again. Then over the course of the next few months, life with our son changed a little bit. We had reached a new point, and I felt like we had gotten past all of those “preemie problems.” Except apparently we hadn’t. Feeding became a big issue, we started seeing some specialists we hadn’t even needed in the NICU, and it became apparent that a more medically involved path was going to be our reality. I felt like we were going backwards and the rest of the world was moving in an entirely different dimension than I was. Rare diseases and lifelong struggles were brandished around, discussed, discounted, and returned to. We still don’t really know, but the point is the NICU reunion went from a fun way to show off what a perfect big boy my son has gotten to be to one more reason to visit the hospital. One more appointment. One more thing that reminded me our baby experience was anything other than “normal.” The day arrived, and I literally crawled in my bed fully dressed almost in tears not knowing what to do. I had this feeling like I needed to go, like it was somehow an important thing to do, but I didn’t want to be in a big crowd of people. I didn’t want to spend more time at the hospital. We had been running for weeks, and I just wanted a break. And then we went anyway, and I could not be more grateful we did. Here are four reasons I’m glad we braved the NICU reunion: 1. Validation. Sometimes I can hardly even believe the rough start my son had in life, how much he has gone through and how hard we have all worked to get where we are. As I walked down the table and picked up each of the beads that my son earned during his NICU stay, I felt a strange awareness of it. This was real, and we survived it. I need to hear that, particularly when I’m wondering at times if we will survive the new challenges we face. 2. Camaraderie. In 13 years of parenting, I have never had as many dirty looks and comments about feeding my babies as I have in the time since I started bottle feeding my son. It seems everyone has an opinion or answer to solve our breastfeeding failures. And yet, I have come to see our breastfeeding story as one of success. We made it a long time battling some really complicated stuff. When people give me looks or make comments about my cart full of expensive hypoallergenic formula I am reminded our story is not deemed successful by traditional standards. But at the NICU reunion? No one cared. Babies were breastfed, babies were bottle fed, babies were tube fed, babies had central lines. Conversations continued around the feeding of babies in a variety of ways. We discussed follow up appointments, developmental milestones, and favorite specialists. No comparing, no judging. No one asked about his size or if he was (talking, walking, etc.) yet. Just understanding. 3. Memories. We did an art project, played with instruments, and more. It was kind of like a baby and me class  he’d never been able to go to before. Sometimes it is easy to leave out the fun stuff in the midst of all the hectic, but making good memories is important even during challenging times. 4. Hope. According to the first invitation we received, we will continue to receive a new invitation for each of the next five years. Looking around, I found myself humbled to be surrounded by a courtyard full of kids who had hard starts like my son. They were laughing, playing children just like any other. Even those who clearly have continued to have struggles. I needed to see that. I needed to know we are going to figure all of this out and that our son’s future is bright.

Heidi Indahl

Parenting a Child With Autism and Always Hearing 'Not Quite'

I’ve been parenting a child with autism for almost 11 years now. For every one of those 11 years, I could have told you there was something different about this child, but it took almost six to find someone to put a finger on just what it was. The thing about parenting a child with autism is it is a never-ending story of not quite. In the beginning it was, “Well your son has some delays, but I think he’s just not quite behind enough for it to be anything serious…” When he was 4 a doctor told us his lack of engagement and anxiety was probably depression and he should play outside more. As he grew, it became harder for others to brush off his quirks with other explanations. Even after his diagnosis, however, we still had the problem of not quite. Now he was not quite ready for a regular classroom, but he did not quite qualify for much in the way of extra help through the school. Through the years, he has mastered most of the self-care skills he needs, just not quite at the age he should have. At the same time, as his mom, I did not quite fit in with the other moms of children with special needs. One family member even outright told us she just didn’t quite see it. Those who are the most invaluable to us as a family are those who see my son’s could bes instead of his not quites. The therapists who want to improve what he has rather than declare it good enough or better than other kids on the spectrum. The doctors who want us to have referrals for private therapies he can’t qualify for in school and who help us tell the difference between autism characteristics and other challenges. The nurse and social worker who see the places his struggles are affecting our family and offer resources for solving those issues. The teachers and coaches who mentor him patiently and include him even though he processes things in different ways. All of these people have seen his could be. Last year after a long evaluation meeting with a new psychiatrist, she noted one of our son’s strengths is his active and engaged parents. Of all of the invaluable information she gave us about our son’s diagnosis, the most important thing she did was remind me no mater how many people see his not quite, the most important person to see his could be, is me.

Heidi Indahl

What I Wish People Understood About Our Short NICU Stay

Our baby was taken away from us shortly after birth. We weren’t allowed to breastfeed or hold our son for a period of time. In our case (and many others), our son was taken to a different hospital, and I wasn’t able to be with him at all for the first day of his life. It was only due to a superb recovery that I was able to spend his second day with him. There were times we couldn’t hold our baby, and we didn’t get to make many decisions about his initial life experience. No matter how long a NICU stay is, we can’t have those hours and days back. Here are six things I wish people understood about our short NICU stay: 1. Time moves at a different speed in the NICU. A few months after our son was discharged, I followed another mom through the same journey from a distance. When her daughter was discharged at 20 days, which was twice my son’s stay, I couldn’t believe how fast it had gone. It may have seemed like our stay was over in the blink of an eye, but it felt so much longer inside those walls. In my mind, those 10 days took as long as his entire first several months. 2. There is rarely no such thing as a healthy baby in the NICU. No matter when a baby is born, they are in the NICU for a reason. There are full-term babies and micro preemies and literally everything in between. Some babies face challenges in one particular area — respiratory, feeding, infection, etc. — while others face challenges across many areas. Age is not a reliable predictor of what type of challenges a baby may have. There are babies who were younger than mine with fewer issues and those who were older and had more. The fact that your cousin’s baby was born the same gestation as mine and was healthy doesn’t mean my son didn’t really need to be there. It wasn’t just a precaution; he was there because he needed help. 3. I really did everything I could to breastfeed. During my first few days in the NICU, I couldn’t believe how accepting and encouraging the nurses were of whatever I was able to provide. It felt like so little, and as the days went by, we were still counting in milliliters. I was horribly discouraged, and it was the nurses who celebrated every drop with me. When our son showed absolutely no interest in breastfeeding, I had to make a choice between bottles or breastfeeding that included staying or going home. I chose to go home. For more than two months, we struggled to establish breastfeeding, and when we finally did, it was short-lived due to complications with reflux and growth. Part time or not at all was my choice, and while I wish it had been different, I don’t blame anyone that it wasn’t. 4. Short-term stays can result in long-term challenges. Just because we came home after a relatively short stay, doesn’t mean we came home without complications. Feeding was a work in progress even at discharge, and breastfeeding didn’t come at all for weeks later. Growing was hard for my preemie, and he still faces challenges with severe reflux that compounds all of it. At six months old, he sometimes chokes so hard on his own spit that I have unbuckled him from his stroller to pick him up quickly to help him clear his airway. His development has been slow and steady, but he doesn’t look or act like other babies his age. He was relatively healthy for his age, but he has catching up to do and that will take time. Even babies with short NICU stays can come home with challenges that need to be looked after for a longer period of time, and they may remain susceptible to additional illnesses in their first months and years. 5. We know other NICU families have mixed feelings about our short stay. Seeing babies come in and be discharged before your baby can be hard. Seeing babies younger than yours come in for a few hours of observation or quickly discharged can be hard, too. You saw us come and you saw us go, but you had to stay. I want NICU moms with longer stays to know that I understand my experience wasn’t what yours was, regardless of any challenges we’re still having. I’m also happy to lend you an ear or a shoulder if you need it because I’ve been there enough to not want to be there a moment longer than need be and every moment seems to take forever. 6. Our hearts ache for the families we left behind. We think about the babies we left behind regularly. I remember their names and their faces. I remember their parents. I have no idea if any of those people will remember me, but I remember them. The same goes for the nurses and doctors. In the grand scheme of things, our stay in the NICU was short, but all of the people there made a lifetime impact on me. Follow this journey on Work and Play, Day by Day. The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.