The NICU Experience... Words to Describe it
Terrifying, stressful, saddening, maddening, traumatic, disempowering, fearful, unpredictable, scary, mystifying, changing, bizarre lights, jarring sounds, life and death, tubes, new languages, new people, infection, struggle, adjustment, exhaustion, the unknown, the unexpected, lack of time, too much time, stress, fear, fear, fear.
Simply using word association to describe the experience brings back the sensation of being in a new place, not knowing the outcome of any minute, of constantly being reminded that nothing is promised and that there's no way of knowing what tomorrow (or even the next hour) might bring.
The words fall short of aptly describing the circumstance, but can give a slight sense of just how destabilizing a traumatic birth experience and the subsequent hospitalization of your baby can feel for a NICU parent. I know because I was one.
When I went into preterm labor with my twin sons at 26 weeks, I remember feeling constantly at a loss. Initially I was so shocked that the pain I felt was actual labor pain, I couldn't even fathom it. Next I had to figure out whether my boys were viable, because prior to that moment, I had had no idea that this kind of thing could happen, that it really did happen. Once they were born, I had to learn to navigate the hospital, research medical interventions and give consent for doctors to go ahead with them (if the situation wasn't an emergency).
I managed, with my husband, the constant barrage of questions, input, and sensory stimulation that whirled around us. In short, my life became a swift wash of unimaginable events, decisions, and emotions that came wave after wave for the 88 days that my surviving son and his brother (who only survived for 6 days) spent in the neonatal intensive care unit. Afterward, on quarantine for six months and isolated from family and friends, my husband and I were left to worry whether our surviving son would ever be healthy, and to cope with the innumerable emotions that had become prevalent in our day to day lives.
Trauma? Yes. Was I depressed? Honestly, not to be sarcastic, but I think it would be more jarring to find someone in such a situation who didn't feel emotionally bereft and overwhelmed. Grieving? Yes. Not only for the loss of my beautiful son William, but also for my last months of pregnancy, the hopes I had predicted for the future of our family, the identity as an absurdist fun-lover I had developed over the course of my life, the assumption that I had held that my boys would not be struggling for their lives upon their births. All of that was gone.
These feelings don't even account for the massive hormonal shifts that were occurring in my body with giving birth, lactating, and adjusting to the sleepless schedule that being a new mom brings.
Because THE NICU is Hard
As a therapist, I knew the importance of seeking out counseling, not only for me individually, but for my husband and I, to figure out how to cope with this huge shift in events that had overcome our lives.
I wanted to prevent the trauma of this circumstance to cause further harm in the future, from haunting us, or somehow damaging our relationship with our son Elliott, or with each other. As a NICU parent, have you ever considered seeking out therapeutic support?
It can be challenging finding a therapist in and of itself. With a newborn baby, let alone a baby with medically complex needs who is either in the NICU or was recently discharged, therapy can be discarded as an unnecessary "perk".
However, don't let this hold you back from seeking out the help you may need.
Therapy can help prevent the occurrence of PTSD symptoms, it can help you identify and manage your depression, it can benefit your attachment with your baby, and it can salvage/improve your relationship with your partner (in a circumstance that has commonly been associated with the dissolution of partnerships).
Here are some tips that, as a therapist I have a little "insider knowledge" regarding, about how to find a person that embodies what you need, and how to know if it's just not a good match:
How to Find a NICU Therapist
1. Identify who needs therapy and why
Is it you as an individual? Or would it be more beneficial for you and your partner to seek out help together? Once you identify who will be going to therapy, think about what your historical experience of that world is. Have you ever had therapy before? What worked? What didn't work? If you've never had therapy, what is your perception of it?
As an individual, try to think about what you want out of therapy before you contact a service provider. As a couple, try to come to the "same page" about what you're seeking, what your hopes are, and what you're not ok with.
Having a solid sense of what you’re seeking out will help you identify a therapist that is a "good match" with you and your family's needs.
2. How will you be paying?
Unfortunately one of the biggest challenges of seeking out therapeutic services is the fact of payment. If you want to go through an insurance company, you will need to go to the insurance company's website to find out about covered care providers in your area. HMOs will generally cover therapy for a certain time period, but refer clients to their own providers (approved by the company).
PPO insurance may also cover part or all cost of your therapy for their covered or (sometimes) uncovered providers, but first talk with your insurance company about it, and understand that there may be a delay in your reimbursement for sessions. Couple's therapy is generally not covered by insurance.
3. Develop a list of 3-4 potential providers that seem like they could be a good match
Do you know anyone else who is currently receiving therapy? Ask them if they would recommend their therapist. If you've decided to go through your health insurance company, they oftentimes have lists of nearby providers that are covered by their services.
If you haven't found any good leads, you can google therapists in your area to see if there are any service providers close by that seem to match the needs of your family.
Psychology Today and Good Therapy also have lists of therapists, along with their bios and locations, whose credentials have been verified. Most therapists offer a free, short phone consultation with prospective clients.
Additionally, web-savvy therapists oftentimes have websites outlining their approach to therapy and an example of their writing. Take a look at whatever information you can find regarding a prospective therapist's clinical approach, and try to think about whether that would be a good match for you. It is also useful to look for therapists who work specifically around parenting, the NICU, attachment, trauma, and/or post partum depression/anxiety.
It helps to find someone that has some sense of your experience, and a level of expertise in talking about these issues.
4. Develop a few questions that specifically address points of concern
A few things I asked my individual therapist during our initial phone session were whether she'd ever worked with NICU parents before, whether I'd be able to bring my son to sessions (he was in the newborn stage and I knew I wouldn't have childcare for him on certain dates), whether she provided Skype or phone sessions, what her approach to therapy was, what her cancellation policy was, and how she felt change occurs for her clients.
My husband and I asked similar questions of our couples therapists, in addition to couples-specific questions like how they managed a session when they identified with one member of the partnership more than the other.
These are a few ideas, but the more questions you have, the better sense you can get of your therapist's approach to their work, and thusly, how well the two (or three) of you may work together.
5. After your brief interviews, make an appointment with the provider who seems to "match" with you (or you and your partner) the most
But keep in mind, this does not obligate you to stay with this therapist. If, when you meet in person, your rapport with them feels "off" or you don't feel safe with this provider, it's ok to move on to trying a different therapist.
6. After meeting with your therapist for awhile, check in with them about your clinical goals and where you stand with them on a periodic basis
Every 6-8 weeks, it can be beneficial to have a session regarding a "status update". In this manner you can refocus on the clinical goals that brought you to therapy, and also recognize how far you've come. With your therapist, you can collaborate on the most beneficial way to move forward, what's worked for you and what hasn't, and examine the progress that you've made.
7. It might NOT be working if...
If you have the sense that you haven't made any significant change after meeting with your therapist for awhile, it's ok to reevaluate whether this is a good clinical match for you. If you feel your therapist is "pushing" you towards goals that you don't identify with, it's ok to bring it up with them and/or to move to a different provider.
If your therapist minimizes events that you deem significant, or doesn't seem to "get" the perspective you have of events, it may be another sign. I highly recommend giving therapists time, as sometimes it takes awhile to build a relationship that is useful in resolving clinical issues. I also recommend bringing up problematic issues with your therapist before switching providers or giving up-- your relationship with them could grow stronger when you work through an issue that you feel is important or challenging.
However, if you feel that something significant is amiss in your meetings with your provider, check in with yourself about whether this is acceptable for you, or if it might be a sign that the professional relationship with your therapist isn't working out.
Overall, it's my opinion that anyone who has witnessed their baby's stay in the NICU could probably use therapy to some extent.
It is very useful to consolidate and organize the events in your memory, and to speak to the different emotions you experienced whilst in the NICU. After building a relationship with a service provider, it can also be incredibly helpful to go back to therapy should challenges come up in the parenting or partnership experience in the future.
Therapy can be such an empowering source of support during difficult times, it's important to remember it doesn't take "mental illness" to lead us to a provider's office. Sometimes, life events are just too much to be able to handle on one's own, and it's necessary to make the space and time to make sense of them in the company of a trained professional.
Kara Wahlin is a marriage and family therapist located in Southern California. After having gone through the premature birth of her twin sons at 26 weeks and the subsequent NICU experience, she made it her mission to reach out to other parents subject to this incredibly challenging circumstance. She developed the therapeutic program NICU Healing, hoping to provide support to parents struggling with the effects of the NICU during an infant's stay and afterward.