1 year later and still hurting.

I know in my situation, like you said, I was so in "crisis mode" when my kids came home that I didn't have time or energy to spend on ME and what I was personally going through. The boys were almost 2 1/2 - and finally healthy and doing well - when it really "hit" me.

Hang in there. You have been through a lot - it is okay to mourn that and be upset. Have you considered seeking professional couseling? I started seeing a psychologist and medical around the time I am talking about and it helped immensely.

Take care,
Kara

Thank you so much for that.It just seems like when your thrown into a situation like this it is absolutely mind blowing.All your parenting skills from your other child(ren) go right out the window.But everyone keeps telling me "Ro its been a yr already.You cant keep dweeling on it".But its not dwelling on it if the memories never left your mind.But thank you so much i appreciate that.

I'm like Kara...for us we are still in crisis mode but I realize that everytime things calm down a little I start to have a hard time.

Like Kara said you've been thru so much...

I would always also consult with your dr, sometimes if you can find someone to talk to it really helps. It's been huge for me!

Keep us posted on you...
Hugs
Kate

I was sort of the same way the first year after my daughter was born prematurely. I couldn't even hear the word NICU without cringing, and I would tear up anytime I heard/saw something about premature birth/preemies.

I think that I really mourned the loss of a "perfect" pregnancy. I felt (and sometimes still feel) that I was cheated out of spending that extra time with my daughter in my womb. She is doing WONDERFULLY now, but prematurity is still always in the back of my mind. It changed me as a person and I will always see my daughter as a preemie.

I was so "obsessed" with prematurity/preemies that I decided to go to nursing school after my daughters birth and I hope to graduate in December and work in the NICU. It really felt like the right thing for me to do and I can't wait to help other parents with their preemies.

It's taken me a long time to sort through my feelings so don't feel bad. Share is a great place to be...everyone here understands what it's like to be a parent of a preemie. It has definitely helped me on my journey. Starting a blog or joining a thread can be very therapeutic.

Good luck and if you can't get through it by yourself, talking to your doctor is always an option. Hope your little one has a great 1st birthday!!!!

Kayla

I think all of us have been upset by the loss that we have....those last few months, a full term pregnancy, the "dream" delivery...it's something that we can't change though. Try to look at the good things that have happened and not focus on the past. I've had to teach myself to do that, but gradually it's gotten easier. We're here if you need to talk.

Tracy

Wow...My little girl is turning 1 in a few weeks and every word you said is how i feel right now.
I feel like I'm stuck in this sad place and cant get those horrible memories out of my head. I have this feeling of anger because she had to go through all of that and she didn't deserve any of it. I've been seeing a counselor and i have to say that it has helped a lot. It gives me a outlet for all my emotions i hold inside. I would encourage you to find a counselor that hasn't been a part of your journey and talk with them. It feels nice to talk to someone who has no emotional ties to you or your baby(most churches offer free counseling, that is where i am going). They have a whole different view on your situation and can offer some very good healthy advice for you to get through this hard time. I feel your pain so please e mail me if you need anything.
Aisa

Thank you so much and yes im trying to find one right now.I just have alot MORE going on that recently just happened so im kinda working in slow mode.but thank you so much for the tip i greatly appreciate it.

I read your posting and became a member just to post this!! I am the mom of a wonderful 24 wkr now 7 yrs. old. I had severe preclampsia and was plagued w/ guilt for years. I felt my body failed my son and because of that he was suffering so much. I even went as far as having my tubes tied out of fear of giving birth to another preemie. Time is a wonderful healer. Guilt is there sometimes, but less than before. My head goes over 'what ifs' sometimes and I come to the same conclusion....the past can't be changed, only the future. I am blessed w/ a miracle and that's the reason it happened. You can't truly experience joy until you have experienced grief. I hope this helps and you are in my prayers.

Thank you for sharing your feelings and story. Reading your story brought such a sense of comfort to me because I am dealing with the exact same feelings inside. My son was born 7 weeks early on April 28, 2008. He was in the NICU for 14 days after I had an emergency c-section since he was in the breech position. I did not get to hold him for several days. I felt so crushed inside that it had happened. I felt guilty (although I knew I did nothing wrong). I was ecstatic that my baby boy was alive and that he was brought into this world. However, I was scared, distraught, confused, etc. My husband and I practically lived in the NICU for 2 weeks. I was so scared everytime I heard one of his machines beep because I was scared he had quit breathing or that something had gone terribly wrong.

It's nearly 7 months later and he is an extremely HAPPY and loving baby. I'm so blessed and so is he. He battles reflux and frequent illnesses, but overall seems to be doing just fine. He is 19.5 lbs! (up from the 4 lbs he was at during the hospital stay) All of these things bring such a calming effect over me, yet from the moment it all began on April 28, not a single day goes by that I do not think about it at least once. I cannot look at pictures or video from when he was in the NICU or from when he was a newborn without crying or getting choked up. I know how lucky we are, but yet the feelings/memories stay inside and I feel like I can't "get over it". I can't look at preemie outfits without choking up, seeing preemies in pictures/tv/ads, etc without being flooded with emotion. It's hard to tell people details about my experience without getting emotional. I'm so torn up about it that I don't think I can ever go through it again. I'm not sure I'll have another child due to the fear of it happening again. My husband also deals with the emotional pain/memories, but he finds ways to channel it and let it go. He, too, is afraid of it happening again. We are both in agreement to most likely not have another child.

I know exactly how you feel and I'm so glad I read your post. I hope that you do find a way to find peace with what happened. I'm searching for that peace as well. Everyone says "time will heal the hurt memories and pain" or "you need to get past it...it's over!"...but those people don't know what it's like to have your precious baby go through such an ordeal nor do they know what it's like for you when you have those feelings/memories/experiences. I do think in time I'll be able to get over the "hurt" feelings, but I'll never lose the memories. My hope is to go days without thinking/remembering about it. I also want to be able to look at his pictures/videos without getting too emotional.

Please feel free to email me. I'd love to talk to you. Best wishes to you, your family and your daughter.

I am a mom of a 27 wkr and is now 9 months old and to tell you the truth i am the same way you are.To me that is just not something someone is to forget.Willing to talk anytime.

I posted the other day, but wanted to also add this:

Tonight my husband, baby and I went to the NICU where our son stayed after he was born. We went to visit the nurses and show how much our son Eliott has grown! The nurses were so excited to see him and they actually remembered us! It was a very special visit. To my surprise, I never once felt sad or scared while I was there. Prior to going, I was nervous about how I'd feel inside the NICU...worried that I'd be flooded with the bad memories and probably break down a little. I was surprisingly calm and happy.

Maybe that is something you could try doing. I'm not sure it completely helped me yet, but I'm thinking it did "help".

Happy Thanksgiving!

OMG..ty u so much for that..it was amazing..ughh all the feelings just rush right back..this month is horrible for me..taking a MAJOR toll on me..i appreciate your message so much..The only thing is im in NJ my daughter was born and hospitalized in FL..i commend your strength to go back and face that i dont think i would have been able to.thank you so much

Hi KnJ'sMami

My son was born 4 months ago and spent 6 wks in the NICU. My husband and I stayed at my parents house the whole time as I could not bring myself to go home without my son and also would get flashbacks of the night I went to the hospital. I had to have an emergency C section due to pre-eclampsia and HELLP syndrome. The memories are all still fresh in my mind and I could still feel the pains that I was having the night he was born.
I still get very emotional and get flooded with memories almost every day. I feel that preemie parents are very special people and the children are even more special. It is a special bond that we share that no one can understand unless they have been through it. Please don't feel that you are alone in having these feelings, the experience that we have been through is life changing.

It will be five years since my daughter was born into the NICU. I knew when I got pregnant she would be there but did not know how long she would be there. She ended up being there for 107 days. The day I was release to go home I did not want to leave. I was determine to stay at the hospital and not leave at any time. I took a poll from my husband to my daughter's nurses and the final say was going to be my midwife. She walks in seeing me crying and not wanting to go. She gave me the best advise that day, your not going to be any good here because they are going to be here 24-7 here with ericka and they will call you if anything happens. You need your rest because your not going to be any good for her like this.She told me to get out and she gave the nursing staff not to let me back in unless there was something wrong with Ericka or 24 hours had passed. I remember every conversation about her and wrote down everything that my daughter went through in a book for her. It ended up being three books, but I want her to know exactly what happen while she was in the hospital. I miss the people I met in the hospital but am happy we have not been there (knock on wood) in over seven months. Five years later I still remember everything too.

Im so glad to know that im not alone my son was born 2 months early and only spent 3 weeks in the hospital but it changed my life forever. I lost the loan to the house i was suppose to have been moved into by the time he was born. I had to get rid of my cats that i have had for 7 years because the apartment we had to move into didn't allow them. And i am about to loose my job because they are not extending my medical leave. I don't know how mom's can get back to a normal life . How does someone go back to work with such a small baby who needs so much attention with feeding and monitoring ? My son Jacob is sick and he can't even get his 2 month shots so daycare is out of the question. I wouldn't want him in there anyways.
But at the end of the day you are right we are special people with very special children , each day he brings a new and bigger smile to my face then the day before. I just hope that everything I have lost he will bring back to me with his love.

have had 2 children have extended stays in the nicu i am a mother of 4 children my 2 boys are the oldest one is 12 and the other is 3 both are full term babies but my 2 girls are preemies we lived in different towns from the hospital my oldest daughter was born in little rock ar and we was visiting my ex sister in law in smackover ar witch is 2 1/2 hours away from little rock luckally i was able to stay at the ronald mc donald house shw was 28 weeks and 4 days and weighed 2 lbs 6 oz she was there for 7 weeks and she is totally disabled the childrens hospital helped us get her on SSI and my youngest daughter was born at 27 weeks and 6 days we liv in mineral wells tx and she was born in fort worth tx its 45 min away from our house and i also lucked out and got to stay at the RMD again she to is on SSI the hospital helped with it also i know that i was told any baby born under 2 lbs 10 oz may be elgible for SSI it helps sence there dad left us 2 months after i found out i was pregnant with my youngest daughter he left us in jan 08 so i am doing the parenting all alone its hard but gotta do it right what helps me get through the day with out crying is i focuse on my children we have alot of dr. appointments and therapist in the home 3 to 4 days aweek both my girls are in therapy my oldest gets P.T. once a week O.T. twice a week S.T. once a week then we also have E.C.I. twice a month for her and my youngest daughter has O.T. once a week and fixing to start S.T.once a week she to has E.C.I. twice a month so we stay pretty bussy i hope this helps you with this just remember we all gotta stay strong for the children k and if u ever want to talk just let me know k

Sweetie ... One year is an important anniversary. The time of year, weather, and holidays are all very real reminders of what you went through as a new NICU mom. Very real .. Likely very traumatic ... Very powerful emotions.

Working through all of these emotions takes time. Experiencing the anniversary is a start. However, if you feel you need to speak with a counselor or ask your physician for medication to help you process through this ... Please do. I hope you have friends and family who will also let you grieve... talk ... do what you need to do on your journey of grief.

Take Care,

Melissa

my son was born only 26 weeks & stayed at nicu for 3 mos. it was the saddest thing, at the same time the miracle in my life everytime i look at my son. He is now 5, he has hydrocephalus, has 3 shunts. Just this past month, he had several shunt revisions, breaks my heart everytime. If there's anyone out there who survived hydrocephalus, pls share your story, i'd love to hear it, thanks.

Hi, I'm 30 years old and was acutally born at 30 weeks premature with hydrocephalus, but somehow it didn't get diagnosed until I was 27 yrs old and I started having headaches and went to the neurologist who told me I would need to have surgery ASAP. Its now almost 3 years later I have had to have 2 shunts placed but I'm doing well. On another note my son was just born at 24wks on Feb 9 and he's in the NICU now, they are watching him closely the next few days to make sure he doesn't develop hydrocephalus. I hope I have helped you in some way if there's anything else I can help with let me know.

Thank you for sharing your story with us. I hope your son continues to do well in the NICU.

Shonda