My Kid is in the NICU, Now What?!

Recently, I was asked on to the podcast ONE BAD MOTHER to talk about my graphic memoir Spot 12: Five Months in the Neonatal ICU. It’s a 100-page comic about my experience as a mother with a baby in the NICU, and how, in part, my mental health worsened over the course of the hospital stay.

When I was on the podcast, Biz Ellis asked me if I had advice for parents, friends or family with someone they love in the NICU. I found I had a lot to say about the subject! I thought it might be worth sharing this information here, just in case it might help someone else in a similar situation. There’s definitely more in the podcast interview, and you can find it in itunes or here’s the link to episode 189: ONE BAD MOTHER.

So here it goes, if I had known then what I know now… here is what I would have told myself:

1) Get as much help and support as you can.

When Asa was in the NICU I needed help with the basics. I needed help with food, with laundry, etc. and I needed someone to stay with Asa when I had to do other things. Chris and my mom and I took turns staying with Asa, so we were able to cover a lot of time, but we still needed other people. Chris was working, my mom was doing all kinds of errands, I was on the breast pump many hours a day, and once we started the tracheostomy training the three of us were away from Asa at the same time for 3 hours twice a week.

I also needed to get outside and take a walk every day, though I didn’t know it at first, I needed the fresh air, the exercise and a touch of normalcy. Every minute I was away from Asa felt like a heinous crime on my part, but the more I walked the better off I was. Unless a person is injured or too depleted, exercise is actually medicine for every known ailment, mental or physical, scientifically proven.

I also very much needed emotional support. All the focus was on Asa, the one in the picture who was in critical condition and who needed everything, so all that focus was entirely appropriate. On the other hand, I was in crisis, having been through a traumatic birth and then dealing with Asa’s ongoing medical crisis. What I really needed was to talk to someone every single day. At first I just talked to someone once in awhile. There weren’t that many people I felt I could call for support, and I didn’t want to over-tax anyone. A few months in I began talking with one of the hospital psychologists once a week. That was great, but there were a hell of a lot of hours in between those appointments. Finally I asked a few family friends if I could call them regularly for support and they said yes, so in the end I was able to talk to someone most days, even if it was only a few minutes. I asked my support people to help me with calming down and thinking positively, or sometimes I just cried my eyes out.

2) That baby is YOUR baby.

Having a baby in the NICU means that as a primary care provider you, the parent, are immediately ousted. Or at least it can seem that way. However, no matter what happens, that is YOUR baby. TRUST your instincts! The doctors and nurses are authorities in the situation, but you have instincts about how to care for your baby that no one else does. Find every way you can to be with your baby, talk and sing to your baby, touch your baby, find ways to hold your baby even if you can’t pick them up. Asa had some procedures that required holding still, we found that Asa stayed much calmer if we helped with the holding and spoke soothing word throughout. We found that some of the medical staff were very encouraging for us to participate in Asa’s care, and some acted like we were in the way and interfering. I was often worried about ruffling their feathers, I worried Asa’s care would suffer if I complained or asked for too much. What I would say to myself then, knowing what I learned in the process, is: don’t worry about pissing people off a little. Advocate for your child for what you think is best. Be as diplomatic as possible, of course, but do what you think is right!

3) Look out for signs of postpartum depression.

Prior to Asa being born I didn’t have a history of depression and I didn’t know the signs. For the first month or two I was pretty constantly upset and terrified, but I assumed I was just reacting as any normal person would react to the events that were unfolding. However, over time, and with all the accumulated stress and trauma, I descended down into a very deep depression. One of the things I noticed (in hindsight) was that at a certain point I got no relief from crying. Normally if I am upset about something to the point of crying, and I cry, then afterward I feel some relief, calmer, I can think better, and I can move into a happier emotional state. Once I was depressed I felt exactly the same after crying as before, which was terrible all the time, there was no emotional variation. Another thing that happened was that I could no longer do normal things, like wash dishes. When Asa was in the NICU, Chris and I stayed in an on-site residence at the hospital for parents of NICU babies. We had a sink in our room and it would get piled up with dirty dishes, and I would look at them but not be able to get up and wash them. I also had relentless dark thoughts. Thankfully I never became suicidal, but if I was crossing a street and saw a car coming, I did think “what if…” Lastly, though there were other signs, there was the moment when I clashed with my mom over something tiny, completely lost it, and attacked a Coke machine. Then, after hitting the Coke machine as hard as I could, I dropped to the ground and screamed. I screamed in a public place. Things had gotten pretty far. After that incident I made the decision to get on anti-depressants. Had I known the signs of serious depression I would have made that decision a lot sooner, and I believe it would have helped me be a little more sane.

How is Asa Now?

Asa is doing great. She had the hole in her neck that was made for the Tracheotomy repaired over a year ago. I did a series of blog posts that are more detailed about her childhood. You can find those here: Raising Asa.

Asa (left) with friend, December 2016

Spot 12, the book

My graphic memoir Spot 12 (memoir in comic book form) was published in October 2016, and is available In the US and Canada everywhere books are sold. There are also some copies in various libraries in the US and Canada. It is also available in Spanish (called Cunero 12). The ebook version of Cunero 12 is available now, and the Spot 12 ebook should be appearing soon. Thanks for your interest in my work!

Jenny Jaeckel

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