PTSD after discharge, when did you feel better?

[judimma]

Our 30w twins were released one week ago after a traumatic 79 day stay in the NICCU. Twin A is paralyzed from a birth injury and has been a roller coaster with whether or not she’d need a surgery for her heart while she was very little (now the plan is to wait 6 months). Twin B was mostly a grower and a feeder.
We have medication, NG tubes, and physical therapy to perform at home.

Yesterday twin b choked on formula and we called 911 because she wasn’t breathing, by the time everyone arrived she was coughing it up but out of it. They said she looked ok by that time, but I opted to ride in an ambulance to the hospital because I just couldn’t believe she was ok and felt it could always be a worst case scenario again.

I know a lot of this is normal new parent terror but I also know it’s PTSD. Being responsible for keeping them safe feels terrifying after we had 24/7 monitoring inside a hospital filled with experts and still had some extreme outcomes.

Did anyone else struggle with this? How long did it take you to feel better? Any strategies you learned in therapy or anything that helped you feel better?

It’s so hard right now. I just want to feel safe again.

 

[arthurkma]

@judimma I relate to this so much. Our LO has been home for about 3 months after spending 122 days in the NICU. The fear I felt of suddenly being responsible for her was pretty intense at times. I remember feeding her when she’d been home with us for a few weeks (shes gtube fed but we are continuing practicing on a bottle). She suddenly went limp (she’d have bradys when POing in the NICU) and I freaked out and flew up the stairs with her to my husband. She was fine, but I felt like I was constantly living in fear that she would not make it. I still don’t sleep very soundly-if she’s especially quiet at night I’ll check on her, but I felt myself starting to relax a little once she had been home for about 2.5 months.

I’m not in therapy, although probably should be, so I can’t speak to that, but for me time has been what’s helped the most. Seeing her grow and get stronger has helped me. And, while this is a somewhat controversial topic on this sub (and in my household tbh), in the early days when I felt like I had to watch her breathing 24/7, an owlet sock helped. It allowed me to feel like I could put her down in her crib for a nap and step away without having to keep vigil. Good luck

 

[evnoca]

@judimma Do you have an owlet smart sock? We brought our 29 weeker twins home after. 9 week stay and we were very happy to be able to monitor them at night. It even alerted us when our boy twin was struggling to breathe due to RSV and ended up needing a 10 day hospital stay. Contrary to common critique, the owlet did not make us feel paranoid but more secure with them sleeping at night those first few weeks. Twins are now 4 months adjusted and we don’t use the smart socks but I am forever grateful that we did.

 

[chretien22]

@evnoca Yes! I think the owlet paranoia is actually parents of non NICU babies putting themselves into a state of paranoia by experiencing a small fraction of what we all have gone through. The NICU parents I’ve talked to all wholly agree that the owner was a great stepping stone to comfort. My girl came home on a hospital monitor and a whiff of oxygen and has since graduated from that as of 1/8, but we have transitioned her to the owlet rather than nothing. We will use the owlet every night until she is 6 months old because why not?

 

[anna_a]

@judimma It took me about 2 years of therapy to feel better with my PTSD. It also coincided with my son being discharged from the high risk clinic. But please don’t be discouraged, I know that sounds like forever, but I was doing better and having mostly good times over those 2 years. So much joy being a parent, I just still had some ptsd in certain situations.

As they get older and you see their personalities emerge, a lot of the “Old version” of themselves kind of fades away. This isn’t a newborn who is in danger, this is a toddler who is doing new things! You’ll also get through things and have positive outcomes, and that will help rewire your brain so to speak. So I deeply recommend therapy if you can, for me it was something I needed to process to really get through it all. Good luck, you aren’t alone!

 

[metalmusicman]

@judimma First of all I am so sorry for your experience and I hope you’re babies and you can thrive after this rollercoaster. I had a really traumatic labor and birth (baby came 3 months early) and I immediately did EDMR therapy. I was able to unpack my trauma and now I can look back on it a as if it were “a movie” and not as if I’m in the moment all over again feeling all of those horrible emotions. I do CBT therapy every week and I look as it as like “maintenance” for everything I’m enduring while baby girl is in the nicu. I highly recommend therapy for PTSD. Again I wish you the absolute best for your amazing babies and you as an amazing parent.

 

[katrina2017]

@judimma May I message you?

 

[judimma]

@katrina2017 yes

 

[katrina2017]

@judimma I did right after I asked lol

 

[zacmac90]

@judimma Hi! Our son spent 14 days in the NICU and he is 5 months old now. Def still have PTSD. I need to get into therapy for sure

 

[phlipside]

@judimma I started feeling better in about two years... once I started taking Lexapro.