I think we need a NICU board...

Crystal318

I feel like I dont fit in anywhere.

I have been posting on the Preemie board and the 3-6 month board but I still dont feel like I can 100% relate. My baby was full term and I was induced.  After many unexpected complications my LO ended up in critical condition and he was in the NICU for 17 days (see my Siggy for more details). 

I have been traumatized by the NICU experience. Most people dont understand what its like to have a perfect pregnancy (thank God) and a "normal" labor and then to wake up from an emergency c-section and find out that your baby might die/be dead and/or have brain damage.

Luckily, my LO is almost five months old and so far there are no signs of any delays or anything like that. We have to take him to tons of specialists - ENT, Neurologist, Developmental Clinics, etc. but I still cant get over what happend. It's like the only thing that makes me feel better is talking about it and reading about other peoples stories. I have PPA due to my experience and am currently taking Zoloft to help with the anxiety.

 Anyways, I emailed The Bump and asked for a NICU board and they said that if enough people request one, they will add one. So, if you think we should have NICU board, can you please email them @ community@thebump.com.

 Thanks for letting me share some of my story with you!

 

Assembly_Reqd

We were in NICU for 18 days. It was major suckage, but there were some 1.5 pounders in there too, so I think we actually had it pretty good.

I sometimes lurk over on the Preemie board but not often. It just brings back how difficult that time was and I really don't like dwelling on it. It is not helpful nor relevant to our situation right now.

I can understand how you would want to feel like you "fit in" and that maybe rehashing the experience could make you feel better. For me, this is not a road I would want to travel over and over again. I hope you are able to find a place that is right for you. Good Luck!

kar5162

DS spend just over a month in the NICU as a 34 weeker (ongoing delays from oxygen issues at birth) and I've found great resouces in the Preemie board.  As with all boards, it changes with the current readership and seems to be more filled with newer, still in the NICU moms right now, but there are a number of other posters who are now further from their NICU days. 

The reality is that NICU survivors come in all shapes and sizes with all sorts of different delays.  DS has been "big" from the beginning and had minimal lung and feeding issues.  Despite a 30+ day stay, he was never really "sick" in the NICU and we were really just waiting for him to put together suck-swallow and breathe for most of the month.  Motor delays are quite another thing and we too spend a ton of time at PT, developmental pediatricians, etc.  So DS's had a different course than many other NICU/preemie moms.  I've still found a great community where I can interact with people who with similar or less similar experiences, still "get it".  I hope you can find a place that works for you.

ToastieSimons

We spend 9 days in the NICU.  But we didn't go there until DS was 3 days old, they were about to discharge us from the hospital and all of a sudden they say he's having seizures etc and he needs the NICU now.

I really have no idea what happened that day, I swear it was like being herded around, the hospital pushed us out with our empty carseat and directions to the NICU.  We stopped home on the way and picked up my mom and some things, I think DH literally just pulled me in the house and back in the car.  Then it was into the NICU we went.

It is a very traumatizing experience. Even for preemie moms, however when you go into labor before 37 weeks I think you're mentally prepared that going to the NICU is a possiblity.  I had the same thing, normal pregnancy, normal induction, traumatic birth. 

Every time we go to the hospital the smell of the soap makes me sick to my stomach.  We had his hearing test and it literally backed up to the NICU and I could hear the "NICU song" of monitors and I was having some major anxiety and just had to get out of there (It didn't help that I ran into the neonatologist right before).  It does get easier with time, we're about 10 months into the road of acceptance, and I must say there is not a day goes by that I'm not reminded of my son and everything that surrounds him, but I still love him. 

I think once the first year goes by it will get a lot easier.  Every time I'm faced with another "first" (holiday, vacation, milestone, season etc) I feel like I have to grieve the image of the child I had pictured for 9 months and accept all over the child I do have.

Believe me though, the love make it so much easier.

GreenEyesinNC

Wow - I think I "win" the award - 72 days in the NICU! And the best part??? I work at the hospital that he was in so I have to go back there EVERY. SINGLE. DAY. I really think I had a mild case of PTSD as I would have flashbacks walking down the hall when I returned back to work but I guess that is to be expected. You're not alone, hon. It WILL get better! Hang in there!!!

chelle828

DS was in for 12 days - and I had a really hard time getting over the whole birth experience - it wasn't at all what I had planned.  We got tremendously lucky and DS is thriving and you'd never know he was a preemie.  I found the best thing I could do - I was already a nurse, so I became a NICU nurse and now I can help other people the way I was helped along.  Granted - if you're not a nurse, that's not a possibility, but try and think outside the box with what might make you feel better.  I hope you find the peace you're looking for, and in the end remember you have a healthy child out of it all.

lboers

We were ony in the NICU for 6 days and it was only for monitoring because baby girl had been diagnosed in utero with a possibly life-threatening disease. Luckily she didn't have any of the anticipated symptoms but they kept us in to meet with all the specialist so we wouldn't have to drive to the city a million different times. I cam't stress enough that I have so much respect and sympathy for families dealing with a NICU stay (short or long). It sucks big time. And it wasn't until I was reading the replies to this post that I didn't feel crazy for wanting to see a therapist to deal with what I had gone through. I don't know much about PTSD but if there were such thing as a mild form I think I may have it but that's for another post altogether. Anyway, I do believe a NICU board would be helpful, if not for those who have gone through it, at least for those currently going through it to have some support on what can be an emotionally exhausting experience. I will put in my request.

JaysonandKristin

DS was in the NICU for 21 days.  He was born with a birth defect (EA/TEF) that was not prenatally diagnosed.  It was a complete shock and surprise when he was born and the neonatologist made the call.  He was transferred to a children's hospital over 2 hours away.  I had to stay for my post-partum recovery, but DH went with DS to the NICU.  I hadn't been discharged yet when my son was taken in for surgery to repair his esophagus and detach it from his trachea.  

I was en route to the children's hospital when DH called to say that the surgery was successful.  We stayed in hotel rooms for the next 2 weeks, and then drove back and forth everyday for another week.  It was frightening, exhausting and traumatizing.  

Watching my son succeed was the best thing that's ever happened to me.  Knowing that we have it so much better than some in terms of continued medical treatment, medications and future prognoses makes me very appreciative.  

I was on the Preemie board when I finally got back to TB.  The girls were amazing.  This board connected me with 2 other families who connected me to a FB support group, and lo and behold I'm the NorCal State Liaison for our nationwide support group.  

I think if telling your story is somewhat therapeutic for you, then keep telling it.  Talk to everyone and anyone that will listen.  Eventually, you'll find others who can relate to you specifically.  Just keep talking!!  

nanakwaz

I think you've found your board!

I had a completely "normal" pregnancy and labor even though my son was 4 weeks early.  That was the end of "normal" for us.  We spent the next 173 days (yes, that is One Hundred Seventy Three days) in the NICU.  Drake had 3 surgeries before he was a week old and piled on another 8 (or so) before leaving the NICU.  Even 3 1/2 years later I have PTSD and random anxiety attacks.  

Here is the good news; he is doing great!  He still has several procedures to come but is a wonderful little boy. 

Please feel free to share here if they don't add your new board.  I think we can all relate a little.    Leaving your baby for 1 day is unthinkable! 

mskolman

I think I win...99 days in the NICU! Actually, CICU after his surgery, but still an ICU full of babies. I know there are mommas on here who have been in the NICU or some kind of ICU even longer, so I am just kidding. 

A NICU board might be nice, but I think many of us just post here. Maybe more specific board might be nice though... 

Florak8

You might also consider talk therapy for yourself. It will help you work through the feelings you are having. I love my meds, but when anxiety is related to a specific traumatic event, I do think you need to talk through it with a pro. You don't want to get stuck spinning your wheels over this one traumatic event for years.

Your experience is still very fresh. It will get easier for you. If you stick around here, you will find other moms who have been through similar experiences. We all have different situations, yet we can relate.

I, too, had a model pregnancy. Then my water broke at 35 weeks, with no warning and DS was in the NICU. You know you are a NICU mom when 3 different men walk in on you when pumping and a stranger asks you when your baby is due as you ride the elevator to the NICU to feed your baby and you don't even sweat it! LOL Those are the funny things I try to remember, and not the 80-year-old dorm room with a hole in the ceiling where we stayed, or crying as I walked over at 6 am to do feedings as DH left for work. It's a tough beginning, but, as your little one grows and shows you all of his personality, it will become a distant memory.

 Hang in there!  

mommy06

I am sitting in the nicu now pumping for my dd. It deginately SUCKS. It's a hard long bumpy road. I try to take it one day at a time and digest things as they come. We have been here for 16 of the longest days of mummify and I am sure that there are 16 more days to come. I have come to the realization that it is what it is. I cannot change it As much as I would love to! Hugs... I know it's tough'

PDX

We had a normal, happy, healthy pregnancy and delivery. Then a few hrs later DS was rushed to NICU and we were told he had a severe heart defect. Now he'll have multiple open heart surgeries over his lifetime. This can be a really good board for dealing with the NICU side of stuff. There are certainly all different types of needs and experiences represented, from those that are a daily struggle but aren't life threatening to those that require ongoing hospitalizations. But I like your idea of there being a NICU board too!