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Posted on Jan 13, 2018 in Down Syndrome, Feeding tube, Fertility, Health, Parenting, Wisdom | 0 comments

NICU Post Traumatic Stress is a thing?

NICU Post Traumatic Stress is a thing?

It’s been a hard year and a half with my pregnancy and Redmond’s health challenges.

When I was single, I marked hard times by watching Netflix in bed, isolation, binge eating, and fantasizing about the things I didn’t have. In psychiatric terms, I’ve learned that I disassociated for a time. I didn’t know how to handle the stress of what was happening, so I shut down. I went through Christian counseling in my twenties and am incredibly grateful to the wise woman God placed in my life to help me process some hard things and move past them.

Several years before Rick and I married, I taught myself how to deal with anxiety in a natural way. I learned to relax and not let things get to me like they had. But when I married him, I warned him that depression had been a bit of a dark cloud over me in the past. I had mostly dealt with it, but am always concerned about it coming back. When I got pregnant with Eliana and experienced such extreme sickness, it did come back. I was miserably ill, newly married, in a place I hadn’t lived since I was 12, in a new church, and without an established support system.

For about 7 ½ months, I spent the majority of my time on the couch, and it got to me. I didn’t call my friends often. I didn’t read my Bible. I was so sick that I didn’t go much of anywhere. When I had to grocery shop, I cried as I struggled to make it down the aisles – a mix of nausea and sciatica and exhaustion making me feel like the floor was pulling me in. I didn’t do much of anything, except feel very, very sorry for myself. I was upset with God for not waving His magic wand over me for my years of (somewhat) faithful service and letting me sail though pregnancy for the first time at 37 years old. Embarrassed, I was concerned that others thought I was being dramatic and attention-seeking. At one point it got so bad that I actually had a fleeting thought of ending the pregnancy.

To read more, click here.The thought horrified me. I didn’t actually consider it, but it was enough of a shock to send me looking for more help to manage my sickness.

But at the end of that pregnancy, I started to feel much better. For the last six weeks or so, I suddenly felt wonderful. Although the baby grew perfectly, I only gained two pounds throughout the entire time. I was on a high-protein, low-sugar diet for gestational diabetes, and although my blood pressure was a little high, I was able to walk around without that awful heaviness (despite being hugely pregnant). From the moment she was born, joy and relief surged over me. Every bit of oxytocin hit me and I was so in love I dismissed all the difficulty as trivial. I wanted to do it again. Seven months later, I was pregnant again and thrilled.

After Charlie was born, I struggled a bit with feeling overwhelmed and concerned about what I’d done to Eliana. But there was no time to feel sorry for myself. I couldn’t lay around and wallow. I had two babies to take care of, plus a husband, a home, and farm business. My father-in-law found a mother’s helper for me, which greatly boosted my spirits, and I got on with life. I just knew there was no way we’d have another baby.

A few years later, after the craziness of two babies started to calm, my ovaries started calling out to me again. What was a few months of sickness compared to the joy of another child? The smell of baby heads and the softness of their cuddles whispered to me. I’d been taking care of myself really well and was hopeful that it would affect how I felt during the pregnancy. To my disappointment, I was again very sick, but I knew what to expect and did my best to get through it without too much complaining. There were a few dark days, but I had an established support system by then and Eliana and Charlie to keep me company.

When Redmond was born and we went through these hard things, I handled it. I didn’t given up in despair. I got out of bed and cared for my children. At no point in all of this difficulty have I wanted to hurt myself or my children. In the early days, I often thought of running away. I wanted to go to Hawaii and lay on a beach somewhere, completely free of responsibility and sorrow. But I didn’t. I stayed right here and did the hard things. I went to church, I got groceries and fed my family, and I did laundry and kept everyone properly clothed. Some of the time I remembered to pay the bills and go to the appointments we made.

I waded through appointments with five specialists, a pediatrician, dietitians and nutritionists, a physical therapist, an occupational therapist, and a speech/feeding therapist. I figured out things like the Board of Developmental Disabilities, WIC, Medicaid, social workers, home health nurses, and 4 different hospitals. I’ve spent the hours of tube-feeding doing research on children with heart defects and pulmonary hypertension, kidney problems, feeding intolerance, and Down syndrome. When I take my baby to new doctors or specialists, they ask me what my medical degree is in. When I tell them I have absolutely no medical training whatsoever, they raise their eyebrows in surprise. I have become an expert in Redmond Samuel Wyse. Don’t ask me any other medical questions. I have no idea. But I know about him.

I don’t write these things about myself to brag, but to educate. In the middle of all the “getting it done”, I actually was dealing with postpartum depression and PTSD. I didn’t realize it because it didn’t look like what I knew of depression. Although I had been handling my responsibilities and learning/growing, talking to my friends about the things I was feeling, there was a moment when I realized something was very wrong. A friend from church was in her 8th month of pregnancy and lost her baby. The much-loved and desired little girl who had grown in her belly for 8 months suddenly stopped moving and was gone. She had to go through labor and delivery for a stillborn daughter.

I am by nature a compassionate person. Before this last year of hard things, I would have felt very sad for her. I would have wanted to reach out and help, prayed for her, brought a meal, and hurt when I thought of her loss. But during this year of hard, I could not handle the heartache she faced. For days on end, I cried. I mourned so much that my body hurt and I had difficulty getting out of the house to do anything. I turned over responsibility for my children to the capable people who support me.

After 6 days of intense grief, the realization that my response to this situation was abnormal occurred to me. In the month before that, several people in my life had suggested that I seek help for my grief and sadness, but I had dismissed them. Like I said, I was getting it done. To me, postpartum depression was when a mother couldn’t function or wanted to hurt her child. I was suffering from exhaustion that couldn’t be explained by lack of sleep. I felt like I was walking around in a fog, unable to think clearly. I’d do things like read an email that required action, respond to it, then discover days or weeks later that I’d completely misunderstood and responded incorrectly. Repeatedly through the day I struggled to find the word I wanted to say. The massive amount of change that had happened in my life overwhelmed me. I had learned a vast amount of new things to manage it.

I excused my difficulties by reminding myself that anyone in my situation would struggle. I was on a massive learning curve and my brain was FULL. I was dealing with medical professionals who often didn’t seem to know how to help Redmond. I was on high alert, regularly afraid, and physically exhausted from a difficult pregnancy, C-section, and months of improper nutrition. I had good reasons for all my challenges.

But I didn’t have a good enough reason to cry for 6 days straight over the pain of someone else. It wasn’t like me and it was excessive. Thankfully, God put just the right people in my life at just the right time. I quietly and tentatively admitted that I might need a little help and the wheels started turning quickly. I received medical and therapeutic help that has been life-changing.

I didn’t want to sit around and talk about what happened. I’d talked to my friends and family about it. I’d even talked about the really bad things – the thoughts I was sad that I’d had, the fears, all of it. But every time an ambulance passed our car, I cried, flashing back to the morning an ambulance carrying Redmond’s tiny body passed our car as we drove to the level 4 neonatal intensive care unit (NICU) where they would put my son on ECMO. I wanted someone to help me deal with my feelings of panic when I remembered the unplanned C-section and the way my newborn baby was whisked away from me before oxytocin-inducing new baby smells and cuddles could make it all okay.

I received an unexpected gift in the form of a therapy called EMDR. It’s for people with Post Traumatic Stress Disorder (PTSD). I was pretty surprised when the therapist said I had all the signs of PTSD. I thought of soldiers back from war, unable to sleep from flashbacks and unable to hold a job or function in society. But trauma is trauma, and I had definitely experienced trauma. (Apparently, PTSD in parents of NICU babies isn’t that unusual. How much worse does it get than almost losing your newborn baby?) She explained that our brains don’t store trauma the same way as regular memories and it’s hard for our bodies and minds to understand that these things happened in the past and aren’t happening today. Therefore, when things happen that trigger our trauma-response, we aren’t responding to what’s happening in the moment, but we’re responding to what has happened in the past plus what’s happening in the present. Our responses to certain situations aren’t in keeping with what’s actually happening.

That sounded very familiar, although I felt like I could easily distinguish the present from the past. She said she could help me make it stop. I would remember what happened, but it wouldn’t haunt me. I’d know that it was sad and difficult, but I wouldn’t become overly emotional every time I talked about it. She said I could be a lot better within a few weeks, and that dealing with the trauma of my situation could also help me feel better physically.

I was extremely skeptical, but I decided to try to trust her. At first it was very hard to believe that I would actually experience the things she said I would. But after a few weeks, I found that she was 100% on target and I learned to trust the process. Within a few weeks I felt much better. Within a couple of months, I can say that the fog has lifted, I’m not losing words, my tears have dried, and I look back at Redmond’s birth and subsequent care with a feeling of warmth and comfort. What happened was hard, but we were all cocooned in the loving and competent embrace of those we’d placed around us long before this event ever happened. They did exactly what they were trained to do in this situation.

The medical professionals cared for both Redmond and I. Rick and I clung to one another. Rick’s parents and our babysitter cared for our children. Our church family and friends jumped in to help. Loved and supported in the most beautiful ways, everything they did worked! We made it through. Redmond is thriving!

I can see that truth now, where before all I saw was the shock and trauma.

It was very hard to take the time to go to those appointments. In the middle of tube-feeding Redmond, juggling multiple doctor appointments and specialists, intense feeding therapy, and all the normal things of life, I had two appointments a week that sometimes left me emotionally raw. The therapist taught me coping skills though, and my family didn’t suffer too much as I worked through the most difficult things.

Working through that trauma uncovered some other trauma that I have yet to deal with. There are things I’ve experienced that have stuck in my brain improperly, causing me to think that I can protect myself through unhealthy habits. No matter how hard I’ve tried to break these habits, they’ve stuck around and hurt me. My hope is that by continuing EMDR for the early trauma, I can learn a new way of processing life’s challenges and actually succeed in breaking unhealthy coping patterns. I’m so grateful to God for giving people wisdom to create this kind of therapy and make it available to me.

As a child, my parents drilled two verses into my head.

“God has not given me a spirit of fear, but of power, of love, and of a sound mind.” 2 Timothy 1:7

“I can do all things through Christ who gives me strength.” Philippians 4:13

These verses are true and got me through the most difficult times. Through Christ, I had the strength to make it through hard things. Through Christ, I was powerful, full of love, and mentally competent. And through the power of Christ, my weakness was addressed and healed. I am so thankful.

I write these things and post them here in hope that my story might help someone else recognize trauma and depression for more than just the typical things we think about. I want to offer hope for healing. If you are experiencing things you think might be trauma-related, please ask for help. Please don’t let finances or time-constraints stop you from healing. Not only will your healing impact you, but it will greatly impact your family – especially your children. (My ability to care for my children and be the mom I want to be has dramatically improved with the help I’ve received.)

Emdria is a reputable organization for EMDR therapists. This link will help you find a local therapist to help you. EMDR is not talk-therapy. You do not have to rehash every detail of the trauma to receive help. It shouldn’t take years, but rather weeks or months. Many insurance plans cover it, and many Christian therapists offer financial assistance for those who need it. Please ask for help if you think you might need it.

If we were chatting over a cup of coffee, what would you tell me?

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