PTSD

A fellow micro-mom wrote the most inspiring blog today....and the blog I've been wanting to write for a few weeks suddenly seemed "okay" to write. I've put it off, for reasons best left unsaid...it's not one I like to dwell on but it's coming to a point where blogging my feelings will help me move past them.

It is hard for some people to talk about it. Others don't have anyone to really talk TO about it. It affects every preemie parent in some way or another; some are plagued by it, others not so much. I never thought I would be one to be so affected, but the events of the past few weeks and the knowledge of what's to come next week have made me realize that no matter how much I may want to deny it, I AM affected.

Post-traumatic stress disorder.

Flashbacks of the NICU.....flashbacks of seeing that tiny little body, so frail and fragile, fighting for every breath, every sense struggling against what must have been incredible over-stimulation. Bright lights, loud noises, strange smells, even just the feeling of air on delicate, fragile skin on a little self not meant to experience any of those senses for yet another four months. Flashbacks of hearing the phone ring and just knowing it was them calling to say something was wrong. Flashbacks of monitors beeping....ventilator settings being upped....that horrible night where I watched my daughter stop breathing and go stock-still for a hundred years what seemed like ages before help came.

Sometimes just seeing someone's pregnancy update on Facebook is enough to trigger tears....sadness that we never made it that far...never got to really feel pregnant, never really got a point where I felt her move...never got to do all of those typical pregnancy things that are so taken for granted. Reading others' baby posts or seeing pictures is sure to start the "what ifs" again, and any mention or photo of a NICU baby will incite a meltdown. I feel like for so long we were in "survival mode"....and now that Ruthie has been back in the hospital and is facing her very first surgery, all of those early emotions are rushing back.

Ruthie's therapist asked me this morning how I was doing.....and I guess until then I hadn't let myself truly be honest about how I'm feeling, and I still don't know how to answer that question. I thought I was okay, and deep down, I will BE okay, I'm just still figuring out how to process all of the emotions that come with having a baby super early, practically living in the NICU for 3+ months, bringing home and learning to care for a medically fragile infant, and still trying to run a somewhat functional household. 

If I were to be totally honest, of all the emotions I'm processing today, this very moment right now, I'm mostly angry. I'm angry that all this has happened to her. I'm angry that what she's going through right now could have potentially been avoided (maybe, maybe not, but I'll never know now) - had her original ped paid ANY attention to what I kept saying. At every visit and all of my calls in between, I feel like I kept repeating, "I think she has a milk allergy..." "I think her reflux is worsening....can't we do something?" Things of that nature. My concerns were never validated until I demanded a referral to a pediatric GI, who immediately diagnosed Ruthie with a severe milk allergy and was dumbfounded that her Zantac hadn't been upped several times since her original dosage months prior. Maybe all of this oral aversion drama could have been avoided, or at least lessened. Maybe she would never have stopped eating. Maybe she would never have gotten to the point where she lost weight and got so lethargic that we couldn't wake her. Maybe she would never have had to be hospitalized. Maybe she would never have needed to even be considered for a g-tube. I'll never know, but if we're talking true-blue feelings, there it is. I'm pissed.

That's just one emotion of many. Sometimes it's hard to decipher how I'm feeling. I can't talk about it with many people, as they just don't get it. It's not their fault and I'm certainly not blaming them, but as other micro-moms will agree - you just don't understand unless you've been down that road. I still hear the beeping of monitors in my sleep, and we haven't been around those in over three months. I still freak out and look around for the coding baby in Walmart when someone's cart starts backing up and that beeping noise ensues. I can recognize almost any tube/wire/monitor/device in a NICU photo, and then get upset when I think back to just how many tubes and wires were on my child and how....scary unreal she looked. 

Not many people know this, but I have absolutely no memory whatsoever of the first day or so after she was born. I'm sure this is not unusual though - most mom's facing such an early delivery are probably pretty drugged up by that point. I don't remember much of what happened the actual night she was born...only what Jay and my mom have pieced together for me. And I hate that. I hate that I don't even remember my own baby's birth. I hate that neither of her parents even got to see her born. I hate that she was robbed of a "normal" birth, a normal "meet your parents" moment, the usual bring-everyone-to-the-hospital-to-see-the-new-baby.....90% of mine and Jay's families have yet to even meet Ruthie. Every day, while walking down the halls to the NICU to visit our daughter, we saw new moms being wheeled out with a carseat in their laps and a smile on their faces. We never got that. Every day I hear comments about who took their baby out-and-about, to the grocery store, to visit friends....Ruthie will be at least 8 months old before she ever experiences any public place other than a dr office, and even during those, she is in a covered carseat. I hate that we have to be such germaphobes. I hate that every cough is analyzed for possible RSV.

I didn't intend for this post to be so negative. I did begin it to say PTSD is a real-deal issue, so let's don't bottle it all up. I've been scoffed at a time or two by some who do not understand the life of a preemie family, and that's okay - I pray they never do. But folks, it IS real and it is a poorly recognized disorder that affects far more families than it should.

Rant over. :)