As a NICU parent, you learn to live moment by moment, squashing and internalizing so much stress into a compartment of your brain that you hope you never have to open and face it. Then, one day, after you get home, the stress clouds clear. Your body begins to attempt to ‘declutter’ its internal filing cabinet. You’ll never know what will end up being the match the lights the PTSD fire.
Our daughter has had troubles with eating since we first started trying to feed her in the NICU. The feeding tube she was on (OG and NG) did not help her reflux. Despite trying continuous feeds and fortifying formulas meant for babies with soy and lactose allergies, nothing helped her reflux. She struggled to keep her milk down, and the doctors in the NICU were disinclined to prescribe reflux medication, believing it to only be a laundry issue. I get it, and I understood their reasoning if it had only been reflux. However, our daughter does not just have reflux. She has GERD. She has the type of reflux that causes her to cry out in her sleep, that burns little acid sores in her esophagus, that causes her to become averse to feeding because she associates milk and liquids with pain. When the hospital informed us that they were going to discharge her home on a feeding tube because she was stable besides her feeding delay with silent aspiration, it was a bittersweet moment. Somehow I always knew that we wouldn’t escape the NICU totally unscathed. As my husband used to say, “if the only thing we have to deal with is fortified formula, I’ll take it.” As the feeding pump and medical equipment company came to review usage and procedures with me at the hospital, once again I was compartmentalizing. When we got her home from the NICU, and the apnea alarms would go off all throughout the night because her heartrate would drop due to her reflux, we would both frantically jump out of bed and check on her. These moments were not helped by my memories of her turning varying greys and blues while not breathing in the NICU due to reflux and apnea moments in the NICU while holding her. The days where I had to jam the feeding tube down her nose while she was screaming bloody murder also haunt me. Doctors Appointments never help my stress level, and they cause our daughter to have a rough day because they don’t care about her little baby schedule that she has for herself, resulting in a rough day for eating. If she goes too long without eating or tries to eat too close to another feeding, she either will refuse to eat or fuss for prolonged periods of time. We sometimes joke about her being offended that we offered her the bottle. Humour always helps to diffuse the situation.
All of these stress related memories exist in my internal filing cabinet, and despite our relatively stable situation at home now, the fear and anxiety related to those memories peaks and repeats every time we have an incident at the house related to feeding. Initially, this struggle was only internal. I would fight a mental battle and just try to talk myself down. Eventually, she got off the feeding tube, and this resulted in a new fear: being placed back on a feeding tube. If she didn’t finish a bottle or she had a large vomit due to reflux, the fear that she would not gain weight and be labeled failure to thrive that would result in a feeding tube busts into my mind and causes me to become extremely stressed. Each episode that has happened amplified the effect of the stress. One day, she didn’t eat her milk, and I got so stressed that I actually had to go kick a ball and express my frustrations to God. My dogs have become attuned to the storm cloud that appears above my head when these feelings surface, which they try to help me with. I have started to do some things to try to help me with these feelings and memories:
- I walk every day, longer on the bad days where she struggles a lot.
- I do deep breathing exercises: breathe in serenity, exhale stress and frustration.
- I imagine the frustration and stress as pieces of paper, and then I burn them in a imaginary fire in my mind.
- I tell myself that she is okay.
- I pray (sometimes more like yelling about how I don’t understand why she has to struggle and be in pain so much).
These techniques have helped me a good bit, especially the walking. After about a mile of walking the hills in my neighborhood, my mind clears, and I feel fine for the rest of the day (usually, unless it is a particularly terrible day).
I know that I am getting better because even on the worst day we have had – the day where she took zero of her bottles for the day – I managed to hold it ‘mostly’ together. Yes I was crying, but I think that any parent would cry if their tiny little baby had been crying vehemently for 9 hours straight. **Please note that this is not “Post Partum Depression.” I have talked with my doctor about what is going on in my life, and I do not have depression.Depression usually requires the symptoms to be present for more than 2 weeks, and my anxiety and stress ONLY occur on days where we have incidents regarding our daughter’s eating and weight gain. Otherwise, I am a happy and engaged person, fulfilling my normal motherly duties and enjoying them (especially the baby giggles <3).