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 and, since 5th grade, is using the pronouns they/them. They had the hole in Their 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

Spot 12 Publishes Today

Spot_12_Cover_90

I’m excited for Spot 12: Five Months in the Neonatal ICU to reach a larger audience. Sometimes people ask me what it’s like to reveal such a personal story, and personal struggle, in such a public way. For better or worse, I told it all, but I don’t find the public part too hard. This story is something that happened to a human being under difficult circumstances, and as humans we often find ourselves facing ourselves facing difficulty. I believe we can learn a lot from each other when we share those struggles, and by sharing we learn we have permission to have our experiences as we have them. Should we have been stronger in those hard times? Better somehow? Probably not. Did we learn a lot? Totally. My best hope for Spot 12 is that readers find in it a kind of solidarity. Whatever we go through in this life is something we can share.

Jenny Jaeckel

 

Spot 12: Five Months in the Neonatal ICU

by Jenny Jaeckel

www.spot12book.com

ISBN 978-1-941203-11-8

Spanish ISBN 978-1-941203-12-5 (Cunero 12)

8×10 trade paper

116 pages

b&w illustrations

Distribution: SPU

Description:

A routine prenatal exam reveals a dangerous problem, and Jaeckel and her husband find themselves thrust into a world of close calls, sleepless nights, and psychological crises. Surrounded by disagreements and family tensions, death, and questions of faith, Jaeckel struggles to maintain a positive frame of mind. Against the antiseptic, mechanical reality of the NICU, the dedicated doctors and nurses are drawn as sympathetic and wry animal characters. Doctor Eyes and Nurse Gentlehands are two of the caring individuals who do all they can to save Baby Asa. At times Jaeckel and her husband battle feelings of helplessness and despair, but their determination, hope, insight, bravery, and connection ultimately helps keep their little girl alive.

Spot 12 ~ Kirkus Review

Spot 12 is reviewed on a major book review website, Kirkus Reviews. The review is very positive and I’m so pleased. Kirkus Reviews decided to include the review in their print magazine as well, which is a great honor. Thanks Kirkus! Read it on their website: https://www.kirkusreviews.com/book-reviews/jenny-jaeckel/spot-12/

Or down below. I’m going to try and post once a month at least until publication time (October). Stay tuned for the next installment related to Spot 12. And don’t forget to check out the website dedicated to Spot 12. It will have the most current information about the forthcoming publication.

Spot_12_Cover_90

Spot 12 ~ Kirkus Review

Jaeckel (For the Love of Meat , 2016, etc.) catalogs her daughter’s five months in the Neonatal Intensive Care Unit in this graphic memoir. When it was discovered that the author was suffering from a buildup of amniotic fluid, her doctors recommended inducing labor early. Shortly after the birth, physicians found that her daughter, Asa, suffered from tracheoesophageal fistula, a rare esophagus defect that needed to be corrected with surgery. So began a monthlong process to ensure that Asa could breathe and eat correctly and would be safe from the dangers of infection. It was touch and go, with Jaeckel and her husband, Cito, restricted in their access to Asa. Jaeckel was particularly affected by the stress of the situation.

With this memoir, told in paneled illustrations like a graphic novel, the author chronicles her experiences with doctors and nurses (of various degrees of patience and gentleness), supportive friends, her intrusive mother, and the esoteric acronyms that categorize hospital life (“Her SATS are low,” reads one speech bubble. “She had T.P.N. and now she’s still N.P.O.”). The people in the memoir are represented in the illustrations as stylized animals, reminiscent of Art Spiegelman’s seminal graphic novel, Maus . Jaeckel and her family, too, are mice, while the supporting characters are a mix of dogs, cats, deer, frogs, and other endearingly drawn creatures. The illustrations greatly soften what, as simple prose, might read as an extremely serious and upsetting account of a sick infant. The depictions of Asa as a tiny mouse with wires and tubes taped to her body are simultaneously adorable and tragic. In the book’s strongest moments, Jaeckel discusses and draws her own fraught emotional state, which leads to very striking panels of symbolic representation: tiny animals separated by immense, inky blackness, and Asa tranquilly aloft among the stars or suspended at the middle of the Tree of Life. Though hospitals, and illness in general, can often rob patients of their individuality, Jaeckel has managed to represent such a world in a unique and highly personalized way.

A memorable and beautifully executed memoir of a newborn’s difficult first months.

-Kirkus Reviews

Spot 12 ~ When and How

 

Spot_12_Cover_90This is the first in a series of posts I’m planning on the making of Spot 12.

I first started imagining making a book when Asa was around six months old and we were out of the hospital. The whole experience was so bizarre I thought it would be good comics material, but I also felt it as a big black cloud of grief and trauma that hung over me. Caring for Asa was still extremely complicated and stressful, and I had no space or ability to focus on writing, so the first thing I did was talk onto a cassette tape. I said everything I could remember about those five months, all out of order. I didn’t remember the order of half of the events, it was total chaos. The day I finished making that recording was winter solstice of 2005 and Asa was almost one. I felt lighter, as if that black cloud had a new container.

 

My friend Susan Steudel worked as a court reporter offered to transcribe the tapes for me and some months later I began to organize the text into a narrative and later still began to draw. The process of writing worked to detangle my thoughts and feelings, rinsing them out like masses of dirty wool. Once I had a solid enough story, I organized it into chapters and pages and began drawing. Drawing made me revisit each event in detail, which was sometimes awful, but it served to comb and plait the wool, in a sense, into a tidy and manageable package that eventually became the book. The drawing took about six months. It was a labor intensive process that I squeezed into the cracks (including hours of insomnia) of the overwhelming care Asa required. It was a full-speed sprint that I collapsed at the end of. I’m pretty sure my right hand went into a coma.

 

My friend and fellow artist Scott Malin told me about the Xeric Foundation and the grants they for years awarded to artists to self-publish graphic novels, and also introduced me to his friend and comics partner Josue Menjivar. Josue became my comics mentor and took the book project under his wing, designing the book, co-designing the first cover, advising me at many points and spending hours dealing with my rookie mistakes. I was lucky enough to win one of the Xeric Grants of 2008 and in 2009 the book went to the printer.

Teal background stars Asa3

Spot 12 ~ Description

Spot 12 delivers the gritty details of a new mother and her newborn daughter, Asa, during a five-month stay in the Neonatal Intensive Care Unit in this visually gripping graphic memoir by Jenny Jaeckel. A routine prenatal exam reveals a dangerous problem, and Jaeckel and her husband find themselves thrust into a world of close calls, sleepless nights, and psychological crises. Surrounded by disagreements and family tensions, death, and questions of faith, Jaeckel struggles to maintain a positive frame of mind.

Against the antiseptic, mechanical reality of the NICU, the dedicated doctors and nurses are drawn as sympathetic and wry animal characters. Doctor Eyes and Nurse Gentlehands are two of the caring individuals who do all they can to save Baby Asa. At times Jaeckel and her husband battle feelings of helplessness and despair, but their determination, hope, insight, bravery, and connection ultimately helps keep their little girl alive.
//

A Year of Books – Spot 12 Gets Legs

 

Meat_Front_3_small copyFor the Love of Meat is moving ahead, with the publisher giving away copies of the advance copy and Meat to appear for preorder in the next week or so.

Meanwhile, friend and book designer extraordinaire Josué Menjivar has been laying out the new edition of Spot 12: The Story of a Birth in English and Spanish. My publisher Erika Lunder of Raincloud Press helped edit this new edition to make a more focused and a little less-dense read. That freed up some space to use a bigger font so that those of you who have mentioned my graphic novels have been hard to read will have nothing to fear! This version is bigger (8×10) and we’ve done all we can to make it better.

Spot 12 is going to be very busy this Spring and Summer, according to my publisher, it’s going to Chicago for the Book Expo, one of the largest book fairs in the world. Apparently up to 1000 copies will be given away by the publication date in October of this year. That sounds like a lot! But I am excited about the book getting out there, and I’m especially grateful to Rita Arciniega for her tireless help with the Spanish translation of Spot 12: Cunero 12.

 

If you know of an organization that might be interested in using Spot 12 in their outreach please contact my Spot_12_Cover_90publisher (raincloudpress@gmail.com). That was our hope doing the Spanish version that it would give the project legs and be a resource for more families (summary below).

 

This unique graphic memoir is about a mother whose newborn spends five months in the NICU, written and illustrated by Jenny Jaeckel. It is a moving, raw and honest look at hospital- and crisis-induced PTSD and the effect of an extended medical stay on a family. The journal Advances in Neonatal Care called it “very impressive,” and said that parents “will find comfort in how the author expresses their pain.”  Nurses, families with special needs children, social workers and anyone in the pediatric field will have something to gain from this mother’s perspective.