Monday, November 14, 2011

With A Shake Of PTSD On Top

I was taking a nap with Grayson this afternoon. I was taking deep breathes of his sweet baby smells and I was startled awake. As I laid there, my heart was racing and I felt like I wanted to vomit. I took a few deep breathes and remembered where I was, that I was not where I always go when my eyes are closed. That I am safe, my babies are safe and that there are no beeps and dings of monitors anywhere.

After a few deep breathes from Grayson and a few from me, my heart started to slowly slow down. As I laid there, a tear ran down my cheek and I wondered if there would ever be a time when I wouldn't go to that horrible place. That some day, that place wouldn't be etched on my eyelids.

I was fine for 93 days while we fought our way through the NICU. I was fine for the first few months. Then when we needed emergency brain surgery I lost it. I remember EVERYTHING that happened that day.

We had 6 doctors look at him and he got sicker and sicker by the hour. He wouldn't wake up to eat. All six doctors said he was doing great. As the night wore on he was VERY sick. For some reason I was shaken awake ( literally, I felt shaken) to go check on Tyler. He was in his room, gagging and dry heaving and unresponsive. Dallas was very asleep and I packed up Tyler and took him to the nearest ER. They took him up to PCMC and I went home to tell Dallas he had to come. I drove us up there. I sat with my baby till early morning. When they came in to do one last test his heart rate was slowing. I was literally watching my son slowly die. I stood by helpless.

The last test showed my worst fear. He was going to need brain surgery. NOW. His head was not doing what it was suppose and he needed a shunt. I left the room.
I left the room to throw up.
I couldn't listen to this one more minute.
I needed air.
How could this be happening?

Ty was taken to Emergency brain surgery and we waited. Soon after, every time I closed my eyes I would walk through a part of the NICU. Usually a bad part. Usually a part where a blue bag was used on his little body. Usually a part where he was dying.
NOT the first surgery. This was his number 5 and we repeated it again six months later.
I got therapy. I got medication. I have stayed on all of the above. Yet sometimes when I close my eyes, I can't help but walk through it. It makes me sick.

PTSD is a anxiety disorder that usually occurs AFTER you have experienced a traumatic event that involved the threat of injury or death. PTSD changes the bodies reaction to stress. It doesn't happen to everyone who experience the same event. Sometimes it just happens.

A few studies have shown that there are lasting effects, not only on the patient but on the parents. Watching tubes, death and life altering events happen right before their eyes can really take the parent for a ride.

I have often wondered how many people are out there that have this same problem. How many of us who have walked the halls of the NICU have it etched in our memory? How many moms are over protective and over react at the slightest anything? How many have our Pediatricians on speed dial? How many need reassurance a million times that he won't stop breathing in the middle of the night at SIX?

Thanks to medical advances, the smallest babies are being saved. Sadly, the effects are family wide. They are deep. The are etched into our lives forever.

A modern day war zone.



Singedwingangel said...

When my now middle son was our baby and was 2 1/2 he developed chicken pox. A seemingly harmless childhood illness sent our son on a desperate spiral of dancing between life and death. He spent 13 days in PICU on life support because his body was exhausted from fighting it and RSV. I know too well the fear and anxiety of feeling panicked and the crushing weight of it. Sending you prayers and hugs.

Madeleine said...

Nancy your words just gave me chills. I feel so alone and people make me feel that I am not well in the head bc I can not get over our NICU experience. I still check to make sure Spencer breathes all throughout the night. I second guess so much when it comes to his health. We don't live that "normal" life and with his autism now I feel I have no one who understands me. Sorry I rambled on. I am not over it either.


Cynthia said...

It's been 11 years since my preemie twins were in the NICU. I still remember it like it was yesterday but the trauma has faded. I know that it is because we're in a different situation than you are because we're not still dealing with the long-term health issues that can happen.

Still, even when I had a full-term, 8 lb. singleton I didn't breast feed. I was so used to counting every single cc my babies ate that I could NOT breast feed and not know exactly how much she was getting. So, I pumped and fed her even though it was more work. It was a good 5 years before I could hear about another twin Mom carrying her babies to 36+ weeks without feeling extreme envy and a painful sense of failure.

I guess all I can say is that it WILL fade a little more with time. Feel the feelings when they come then let them move past you like a wave. I promise that as the years pass, it will be less and less painful but you have to allow it to become so. I know a woman who lost a child more than a decade ago and has not yet allowed her heart to heal. Don't do that to yourself. We can acknowledge the pain and give it it's due without owning us entirely but it takes time and it's a slow process. Be kind and patient with yourself, you deserve it.