Battle Scars

Life has definitely thrown challenges my way the last 18 months. I've struggled. I have struggled a lot. I'm extremely hard on myself, and fault myself for the silliest things that are not in my control. I try so hard to be this, "perfect" mom. I've set plans, made goals that are virtually unachievable within the timeframes I set. Depression is real. PTSD comes in many different forms. And... sometimes, you don't realize the hold they can keep on you.

When I was hospitalized due to severe Preeclampsia and severe HELLP syndrome at 31 weeks pregnant, I didn't know what to expect. "They only cure is delivery", said every doctor. I wanted to get to at least 34 weeks. Every week in pregnancy means so much for that unborn perfect baby. I wasn't in control. I'm a control freak, I admit it. I made it to 32 weeks when my body, literally, started shutting down. My kidneys were stressed, my liver wasn't functioning 100%, I was having chest pain and palpitations, my blood pressure couldn't be controlled and I couldn't breathe easy. I was that moment when my oxygen levels dropped, and the alarms for my monitors started going crazy, that I knew I couldn't control this situation and if I waited any longer HELLP would kill me.. but not just me, likely my son too. The surgeon wouldn't allow me to wait any longer.

I can't remember much of anything from my cesarean. I remember struggling to breathe and feeling like I was going to pass out. I remember the feeling the pinching feeling as my stomach was being cut open. I remember the OR nurse constantly touching my shoulder and telling me I needed to stay awake. I remember being so scared my son wasn't going to come out breathing. Lastly, I remember his cries. He was breathing. I saw him for just seconds before he was taken to NICU to be put on oxygen. I was no longer pregnant, but My baby was ripped away without me being able to touch him. I couldn't touch my baby boy.

Two days. I didn't get to see my son for 2 days. I didn't get to hold him for another day after that. I stared at him through an incubator, I held his tiny little hand with one hand, and held my belly with the other because I was so swollen due to still battling HELLP and surgery that my stitches were pulling. I cried every single time I had to walk away from him, every time I had to wait to see him, every time there was a set back and I cried when I was discharged. I cried myself to sleep for 5 weeks. My body failed him. I felt like I had failed him. Everything I envisioned for myself as a mother.. everything I had planned was ripped from me.

Five weeks, it's longer than some NICU stays, and shorter than others. But, a day in NICU can do so much to a mother. I don't do well in hospitals anymore. The beeps of monitors, the smells, babies crying in hospital rooms.. It gives me really bad anxiety. I get heart palpitations. I still have nightmares. I still panic and check on my son in the middle of the night. I'm terrified he's going to stop breathing. I constantly worry something terrible is going to happen to him. It feels like I let my guard down some and something happens.. this kid has been through so much in his short 18 months.

From a minor heart defect that healed itself by a year (Thank God!), to a uterine anomaly and surgery, rehospitalization, random wheezing, seizures, etc.. This boy is so strong.. So much stronger than his mother who isn't dealing very well with the constant curve balls being thrown.

Fresh out of NICU, he wasn't even home for a week, and we had to dial 911. My 6 week old, not even adjusted, 5lb baby was having what appeared to be a seizure. If I hadn't of taken a, "my journey home" class before we left NICU, I might not even had known what to do. I cried. I cried during the entire ambulance ride to the Children's hospital. I cried and begged him to eat when he wouldn't at 12 hours since he last ate. I cried when they said they were admitting him. I cried as I held him. I couldn't sleep. I sat by his crib and stared at him, and stared at his monitors until I passed out from exhaustion for 2 nights. Ruled as reflux, I just felt like it wasn't a correct diagnosis. I didn't fight it.. and I should have. I didn't know I could. He didn't have any more episodes like he did that night, but he would still, "Shiver" and have weird episodes. I assumed it was reflux. I failed him, again. 

Fast forward to a year old, his little tremors/ "shiver" like activity are becoming more noticeable. Reflux hasn't been an issue in quite some time. I would notice a random little shake. I didn't think much of it because his behavior never changed after. Fast forward to around 18 months, it's becoming even more noticeable. He's having staring spells where he won't respond to his name or being touched. So, we start trying to get video of it so we can show his pediatrician. I thought I was over reacting a little at first. Then, I heard what sounded like a gasp for air over the baby monitor, followed by absolute quiet. I ran to his room and he was staring blankly across the room. He didn't acknowledge that I had walked in. He wouldn't respond to me talking to him, he wouldn't respond to me gently shaking him. I couldn't feel him breathing. At the moment I was starting to panic, he moved and looked up at me confused. He slowly moved, seemed a little dazed and his breathing was shallow. This isn't normal. Something was wrong. He perked up after a couple minutes and was acting completely fine. I called his Pediatrician, and she advised us to take him straight to Children's for observation. No definitive answers, but we're on a path somewhere. I couldn't help him. I felt like I was failing him.

The ER doc said our next step is figuring out what type of seizures he is having. So, we have neurology appointments coming up. I'm hoping for answers. Every second since hearing that gasp over the monitor, my anxiety has been through the roof. I can't sleep. I can't focus on anything but him. I woke him last night just to check on him. I am constantly checking the monitor and listening for him breathing. I almost climbed in the crib with him. I'm so terrified something is going to happen to him. I feel like I'm going to fail him. 

During all of this, I have been failing myself. I have let everything eat and eat at me. I have good days and I have bad days. I feel like I'm starting to get to a good place mentally, and then I have a bad day. PTSD is so commonly known for war, military and first responders. But PTSD entails so much and is very real in the civilian world too, just so often overlooked or ignored. By not having control of this, I'm not only failing myself. I am failing my family; my husband and my son.

I don't talk about it with many people at all. Actually, there's only been a couple people that I've even really went in depth with about it. Every day is a struggle. But, I have to stop ignoring it myself and BE better. These battle scars aren't going to fade, but I have to stop being at war with myself.  I'm not that perfect mom that I keep telling myself I NEED to be. I don't have to act like it all the time. I face real challenges, too.

It's ok to show your battle scars.

NICU Anxiety

Tomorrow my baby boy will turn 4 months old. He's been out of the NICU for almost 3 months and I still find myself with ridiculous anxiety with all things NICU and preemie. I know I haven't wrote about Cash's journey on my blog yet, and I promise I will, but today we battle anxiety... NICU or even Preemie anxiety.

In most cases, you don't plan for a preemie. You don't plan for a NICU stay. The goal is full term, to not have a preemie nor a NICU residency for any period of time. NICU is scary. Having a preemie is scary. After 4 months, you would think I would have moved on. You would think it would feel like a thing of the past. honestly, it feels like just yesterday I was leaving NICU II at St. Agnes bawling my eyes out because I couldn't stay the night with my little boy. I would cry every day because my body failed him and feeling like I did something wrong, that I could have prevented it. I feel haunted by it. So many things are anxiety triggers for me.

More often then not, something on TV will trigger it and I have to look or walk away. I grab my son and pull him close to me and have to remind myself he's home, he's safe, he's healthy and the hardest part of the roller coaster is over.

Sometimes, something someone will say will trigger rage. If someone mentions wanting their baby to come early, I get angry. If someone starts doing things to trigger labor early, I feel my chest tighten. I just can't deal with it. It's one thing to say you can't wait.. but it's another to actually say you want your baby to come early or do things to try and get your baby to be born early. My chest tightens and my emotions get the best of me. I have no filter.

Today, I decided it was time to part with Cash's preemie clothes. Before I even pulled them out of the

Before we were allowed to dress him,
hold him or feed him. Week 1 of NICU

box, I felt my chest tighten. I thought because I was passing them on to another preemie mom that it would make everything easier, at least that's the lie I told myself. Almost every piece of clothing I pulled out of the box was an instant memory.

I pulled out the first outfit I ever put on him, and was flooded with memory. He was in 2nd week outside the womb and my husband and I went to several stores to find an outfit that he could wear with all the monitor wires and IV he had on him. It was the one outfit we could find and the first thing that made me feel like I was actually his mommy. I started to tear up and set it to the side for keeps. I found the outfit I had on him when he was a month old in Nicu, I set it to the side. Then the last outfit he ever wore in NICU, his homecoming outfit.. I set it to the side. I felt clammy, hot and shaky. My chest was tightened and I felt like I was going to break out in hives. I was starting to have an anxiety attack and had to walk away from the box of clothes I was trying to part with. I went and picked up my son, who was cooing in his crib at his mobile and I just held him. I reminded myself he's home, he's safe and healthy. We're not in NICU anymore and it's ok to let go of clothes.

Aside from the outfits mentioned above and maybe 1-2 more, I have the clothes boxed up and ready for them to comfort another NICU preemie mom as they once did me. They are no longer a comfort to me, in a way, they are more of a burden, just hiding in a box in our guest room closet because I couldn't bare to look at them without getting overly emotional. I kept the pieces that marked high points in his NICU stay because those are the moments I want and need to hold onto.

PTSD from NICU is very real. And while I may or may not have it to some degree, this is the life of many preemie moms. For many, it's much much worse and they can't function day to day. I feel forever scarred from our journey to bring Cash home and often have nightmares. Does the 6 miscarriages before our 7th pregnancy have a part in it? Possibly. Do I think about NICU every day? No, but I think about the fact that he is still a preemie and things are still different in many aspects for him.. and for my husband and myself. Our life/ plans revolve around what is best for his lungs, his immune system and digestive system... all of which are trying to play catch up and most people won't/ don't understand because they haven't been through it.

I do hope that one day, soon, I can get away from feeling overly anxious and having so many triggers.