[frostyfamilytwins]

Just curious how many folks still have strong reactions when thinking back on the premature births of you babies and the long NICU days afterwards? We are now a long way from all of that now, and my monkeys couldn't be doing any better. I have two little blabbering, funny, smart and imaginative little toddlers 18 months later, but sometimes when I close my eyes I see them as tiny little helpless 2 pound babies with tubes and wires and beeping machines attached to them. I have wanted to bring photos of how they have grown to the NICU they were in so bad lately, but I just can't do it. I can't walk down that hallway and through those swinging doors and hear all the machines and smell the hand sanitizer and see the familiar faces. I would loose it.

I remember reading a few articles shortly after the boys were born about parents that have been through the NICU experience as essentially having post-traumatic stress disorder, and I believe it. It's gotten better over time, but every once in a while, all of the guilt and fear and sheer helplessness I felt back then can come flooding back when I think of how far we've come. It's something I guess you never really shake completely. And it's not that I love having these feelings hit so hard after all of these months, but when they do hit, I always think of how unbelievably blessed we have been through all of this. I'm not saying someone who had healthy happy full term kids with no complications don't appreciate their kids any less, but I do feel that folks that have been down the long NICU road gain a certain perspective on their kids that is so hard to explain to other parents. Feeling blessed doesn't begin to describe half of what I feel after everything we've been through.

[twinmom2dana]

My boys "only" did 11 days and they were the worst days of my life BAR NONE. The only thing I have ever felt that came close to that sadness was when I had miscarriages and that was a...different sadness. I don't think I ever cried so much as I did those days waiting. I had a tension headache that lasted the same lengh of time they were gone. Nothing eased it including the drugs they gave me in the hospital when it first started. MRI and tests revealed nothing. It wasn't until I felt it ease at a visit to the NICU, and come back full force as we left that I realized it was another level of grief. And I 2yrs later, I am tearing up as I type this. They had no wires, no "need" for medical intervention, breastfed...they were held because they were 33w3d and I guess that was too early. That sort of made it worse because I'd go in, spend the day caring for them feeding and changing them, waching them grow being told they were "doing great" even dealing with NICU nurses who insisted that their due dat was wrong and that they were probably older(they did that well) only to leave each day, alone :headbang: I pray for other mommies who have to deal with that :grouphug: I am so happy and blessed by my walking miracles!!

[Kristine.]

I don't think about it very often but when I do I remember all of the feelings I had.

The day that we came home from the hospital without them I was devastated but then thought (I know this may sound bad) well, not I can get a FEW more days of 8-9 sleep a night. THAT thought was short lived.

We got a call from PICU (the boys bypassed NICU because they could eat and breath on their own, they went to PICU because they had problems controlling their body temperature and were so tiny that when placed in a seated position similar to being in a car seat their O2 levels would drop to dangerous levels), anyhow PICU called us at home or I called them to check on their condition once we made it home and they told me that they encourage, prefer and want a parent or both to be with them round the clock non stop. Well....I was recovering from a VERY recent c-section and was still in the early healing stages.

That first night, fresh major operation or not, I headed to the hospital to take on the night shift. I stayed with them for 12 hours overnight, doing every feeding and just watching them and calling in nurses when their stats would drop. Well my OB got wind of this and said to me "Kristine you JUST had a major operation, you NEED to be in bed resting so that you will recover properly, you CANNOT spend that much time in PICU at once". It was a major blow because I wanted to be with my kids.

After that DH would took the night shifts and watched them as I did when I was doing it. My Father (who came down to see the birth and to make sure I was listening to the OB and taking it easy since I don't usually do that) and I would go several times throughout the day.

I remember crying every night wishing they were home with us where they belonged and every day before we headed over there I would call and ask if they MIGHT be able to come home today and they would always give that coy answer of "Well, let's let their Ped make that decision, we aren't sure". That always left me devastated on the way to visit them. I NEVER knew or was told what or when they MAY come home.

Finally after 7 days Alexander came home barely over 5lbs. You could still see every bone in their body and their long limbs were incredible fragile and the soft spots on their skulls had still not yet fused together. They gave him his car seat challenge and was the first between him and his brother to pass without his O2 stats dropping.

River on the other hand failed test after test after test. Since we had Alex at home I couldn't, not to mention my husband didn't want me toting this premature baby to a place for sick children, take him to the hospital with me to visit his brother so I had to schedule baby sitters so I could go back and be with River.

I would get SOOOOO infuriated with the PICU staff about River's stay since NO ONE would tell me when they thought he may come home. Day after day we waited. I would call them and cry and come up with a million and 1 ideas to get him home, i.e. a carseat that the baby can lay down in as opposed to being propped up since his neck couldn't support his head causing his O2 stats to drop. I just wanted him home with his brother where he belonged. So every single morning I called..."Can River can home yet? When do you think he might be able to come home? Do you know how much longer?" and I never got a straight answer.

FINALLY on the 10th day I made my usual call and they informed me that he passed the car seat challenge. They said they had to put blankets all around his neck and head to keep him from loosing oxygen but he passed. I cried, oh did I cry, tears of joy and immediately told my Dad "WE NEED TO GO TO THE HOSPITAL NOW. River is coming home FINALLY".

Sitting in the backseat with him from the ride from the hospital to my house was nerve racking. I just kept watching him, holding his head up. But man, the joy of having him home with his brother was the best. Right then I thought to myself "It's FINALLY over, we are all together".

So yeah, I think about it sometimes and when I do I also think how fortunate we were to not have more serious problems with them.

Here is a pic of them in their crib once they were reunited, you can still see ALL if their bones. And those arm bracelets they give to patents stayed on for about a month because it was so loose on them for a LONG time.

Meeting eachother for the first time in their crib.

They stayed in preemie clothes and were able to use those super small receiving blankets for a good month-two months.

I'm just so thankful that they are so healthy, happy and way above average for height (97th percentile) and thriving. Their weight could be higher as they are still in the 25th percentile but they are happy, their Ped is in disbelief over how big they've gotten since the first time he met them.

For all the struggles we went through with the pregnancy, their birth and that first 6 months of their little lives, I'm just happy at how incredibly well they are doing.

P.S - sorry this was a novel like reply.

This post has been edited by haleystar: 21 August 2010 - 07:35 AM

[4jsinPA]

I suffered from post traumatic stress disorder. It wasn't just the nicu experience but the whole pregnancy. I cried one day in the whole nicu...I wouldn't let myself cry at all. I spent 12 hours a day there for 87 days. I was completely exhausted. Looking back I don't know how I did it. I don't know how I spent that much time there with 2 at home....and didn't lose it. But thats what made it worse (or so I have heard). I really held it all in until about 1.5 yrs later. It wasn't then that it hit me that we really didn't think we were going to be bringing Mitchell home. I remember one point I stopped asking because I was afraid of the answer. I had McKenna that did very well (except for grade III brain bleed which they told us she may never walk, talk or anything on her own) and still spent 63 days in there. Mitchell spent almost 12 weeks on a ventilator. We had 8 failed extubations...each one I would watch him struggle for air even though I knowningly begged them to try one more time, only to see him have to be intubated again. He had a surgery where they cut his throat open and cut his esophagus and left it open and we weren't allowed to touch him for those two weeks. I remember it all vividly....I think I get more emotional about it now then I did then. I just couldn't deal with it then and I knew it. I don't know what the right way to deal with it all is though. I know there were many moms in the nicu that cried everyday, screamed at the nurses. The nurses asked me a couple times how I could watch and not cry (I think being postpartum especially we joked about how we cry over anything). I refused to cry...I thought I had to be strong. So during that time I did great but it really hit me after. I think also because we had some lingering medical issues. Mitchell stopped breathing and I had to do cpr on him 3 times...we slept with a O2 sat monitor on him from when he was 18mos old-3, then he wouldn't wear it anymore and I just had to hope he would let me know if he was having trouble breathing at night. I would wake up MANY mornings terrified to go in his room, terrified he would be gone. I also spent many nights going in his room and just staring at him to make sure he was still alive. I will say now 5 years later sometimes I don't believe that it was really me that went through all that...like it was a story I was reading. I kept 2 of the Wee Pee diapers...and still can't believe they were ever that tiny. I have so much guilt about their entire pregnancy, so many issues and I feel horrible...horrible for having them so early. I am so thankful they are doing so well now....they are my tiny miracles (still tiny but thats okay)!

I think it eventually gets easier to remember over time, but as a parent it was the hardest thing I have ever had to do and I learned more about myself during those 87 days than any other time.
Here is a pic of my babies this summer. My signature has my montage of the babies first year to see pics of them when they were soo tiny.

[vancouvertwins]

Thanks for a great topic, I always wonder what other parents feel. My girls were born at 28 weeks, we spent 11 weeks in the NICU. They were incredibly lucky and basically had a very basic, uncomplicated course with no long term complications. They were slow to bottle feed though, that was about it. Now we are close to two years later and I still get flashbacks albeit not very often. But when I do I break down. And I also can barely walk past the old NICU, I tear up right away. And I can have these very strong feelings about the memories while I'm watching my healthy girls laugh and play, it's very confusing! It is fading over time, but perhaps will never totally fade. Also, we still are following up with various specialities, etc. for follow up so the story has to be retold many times, hard to forget in that case!
I hope everyone finds peace with their experience and I'm sure we all became stronger people and parents as a result.

[busymomof3]

My boys were born at 31 wks and in NICU for 67 and 74 days. I have been to the NICU many times since taking things for other babies and families and have no problem with being there.

I do however feel very angry still about the whole situation. Don't get me wrong I am very greatful to have my little men home and healthy now but I feel like I was robbed because of our NICU time. I am still angry that I never got to hold both boys at the same time until they were 65 days old.
We lived an hour away from the NICu and I had a two year old at home so I drove in everyday, was absolutely exhauseted but made it through and then two weeks after I had both boys home I had the biggest melt down ever and just couldn't do it anymore. I often wonder if I would have gotten PPD if my boys would have went to term and if we would have bypassed the whole NICU experience but that I guess I will never know.
For myself I am hoping that one day the anger goes away and I can accept it.

[miss_bossy18]

i thought i was fine with all of it as our experience was, relatively speaking, quite positive (my girls only spent 13 days in the NICU with almost no complications at all, mostly just feeding & growing) but i was back there recently & realized that there is a lot of undealt with anxiety hiding inside. it was hard to be there and i mostly just hopped no one would recognize me because i didn't want to talk about the girls or reminisce. that was really unexpected.

[TwinxesMom]

We did 15 and 21 days and every on e in a while I do think about how much they have grown. We had a really good nicu team. We were back in the picu for jessys heart surgery and again had just a wonderful staff. They do so much for their little patients and we couldn have asked for a better hospital

[desolation_anonymous]

Actually no. But our situation was unique. Our twins were born early because one was in distress and turns out his cord wrapped around him twice in different directions with no elasticity. I couldn't feel him kicking on and off for months (the one who ended up with the wrapped cord) sometimes for days so I was in L&D constantly and constantly stressed and worried that they weren't safe in my tummy. Although I'm not glad they had to be in the NICU, and was concerned about potential health problems due to being born early, their birth and stay there was a relief after the months of anxiety.

[kimr]

For us unfortunately, my dh more exactly, he tells people that when your first child is born (or children in our case) its supposed to the be the happiest day of your life, but for him it was the worst day of his life. And to this day he will still tell people that (he just told Brooke's K teacher that earlier this week). For us now 5 years past our nicu experience it has faded some, but yes I still get tears in my eyes when I talk about it (and write about it right now!). Natalie was transferred to a nicu an hour away from home and stayed there for 6 weeks, but Brooke came home the day after I did. One thing that's good is that we haven't had to go back to the hospital Natalie was in, we can go to one closer in the same hospital group for everything we need. But the hospitals are all part of the same parent company and they all use the same kind of soap - which I realized the first time I had to take the girls for some tests and washed my hands, instantly I was transported back to the other hopsital's nicu, it was so surreal! We were just back there last week and I washed my hands, the weird feeling in the pit of my stomach that I usually get wasn't soo bad this time. We had a different but I guess like experience than those of you with preemies. Natalie was diagnosed with a syndrome when she was born called Beckwith Weidemann and was in the nicu because of complications from that. The day they were born was the worst day of my dh's life because not only were the girls born 3 1/2 hours apart (it was not a fun 3 1/2 hrs). The dr. first told my dh that Natalie had a much worse syndrome (before they figured out it was Beckwith) and I had massive bleeding after the 2nd baby and had to be put under, almost had to have a hysterctomy and had to have blood transfusions. It was not a good day. We felt immense guilt as we looked back the first couple of years about not being able to spend as much time in the NICU as other NICU parents (because we also had a newborn at home). So for us it was a combination of shell shock of the birth, finding out we had a child with this syndrome and then a 6 week bumpy nicu stay. We had alot to deal with that first year and we also found out that Brooke had the same syndrome, but fast forward 5 years and the girls just started kindergarten and everybody is really good. So it takes time, but I think I just have learned to live and grow with it now because I can't change it and I've always thought the nicu experience has made me a stronger individual. We won't be having any other kids so no we won't be having the "Baby Story" kind of birth story and yes that makes me upset but not so much as a couple of years ago.

[ArizonaTwins]

It didn't until just a minute ago when the husband of a friend who is 36 weeks pregnant with twins just texted "T - 3 hrs." I am suddenly a ball of nervous energy. At her last US her twins were only measuring 4+ pounds each. My girls were 4 pounds when born at 34 weeks 5 days and we spent 3 weeks in the NICU. I say "we" because I never really did leave. I spent probably less than 24 hours combined total away from the girls while they were there. I admit, I even slept in the car during shift changes because I couldn't bear to be away. Now I am praying that our friend doesn't have to go through what we went through and wishing I could offer some sage advice... but, despite having survived the NICU, I wouldn't even begin to know what to say. Here's the funny part. I read this thread earlier today and thought, "Hm. I'm completely over our NICU experience. I hardly recall it at all." I guess I just blocked it out and it wasn't really gone after all.

[happychck]

just the other day i was talking to a twin mom i'd just met. she said hers were born at 32 weeks and was thankful all was ok. i told her mine were 27 weekers and all was great w/us, as well...... said that through tears. it still gets me, after all this time. i'm sure it always will, in some way.

[dlong83]

I guess it depends on the person really. For me, it still hasn't left me. My girls spend 54 and 60 days in the NICU 2 hours from home. I don't feel angry but like others have said, I did feel sort of robbed. I didn't get to experience holding my babies for the first time until they were over a week old, I didn't even see them when they were delivered because I had to be put under since it was such an emergency situation and they had to hurry. I had been so anxious over the idea of having a c-section and what it would be like to be awake and then didn't even experience it. DH missed the delivery because he didn't make it to the hospital in time (he tried, but they were too fast for him). I wasn't even able to visit the NICU until almost 12 hours after they were born. I just feel like I "missed" a lot of having a "normal" pregnancy and delivery. Like someone else said, I don't know if I would put it down as the happiest day of my life. Scariest, yes. I was in the hospital on monitoring and the idea was that we would not deliver for another 3 weeks. I would say the happiest is when they both came home from the NICU.

I still tear up thinking about the whole experience. My entire pregnancy seemed like one big worry, and while I tried not to focus on that, it was hard not to (mono/mono twins). People sometimes ask me how we did it and I honestly don't know. We just took one day at a time and did a lot of praying.

[lovelylily]

Yes absolutely! My twins were born in an awesome hospital with a really nice NICU. The only thing I wish they would have had available to parents was some sort of therapist/social worker who could identify the emotions and possibly assist us with seeking help. I swear I had PTSD and never dealt with it. Now I seem to have permanent issues. I am trying so hard not to be a helicopter mom, but the simplest conversation with another mom can leave me in tears. Most of the moms I'm around just have no idea what it's like to almost lose your babies. I'm trying to work through all these issues, but wish I could afford counseling or something. Ethan gets really wheezy whenever he gets a respiratory illness and watching him struggle for breath just brings it all back everytime. I don't think I will ever forget my first glimpse of them trying so hard to survive when they were just too early. :(

[Anneke]

I am still struggling with it too. Mine were born at 34w2d and stayed in PICU for five weeks. I went to ICU for more than two long nights and days and wasn't able to see them all that time. Although my girls were doing great, I felt horrible. Nobody understood my feelings of guilt (unnecessary, my gyn said) and regret (about not having had a normal birthing experience and having empty cribs for the first few weeks), so I told myself to be strong and move on. When E&N came home they began crying and they didn't stop until about their sixth or seventh month. I'm not even sure anymore, it's all just a blur to me.

[miss_bossy18]

Anneke, on 30 August 2010 - 04:57 AM, said:

I am still struggling with it too. Mine were born at 34w2d and stayed in PICU for five weeks. I went to ICU for more than two long nights and days and wasn't able to see them all that time. Although my girls were doing great, I felt horrible. Nobody understood my feelings of guilt (unnecessary, my gyn said) and regret (about not having had a normal birthing experience and having empty cribs for the first few weeks), so I told myself to be strong and move on. When E&N came home they began crying and they didn't stop until about their sixth or seventh month. I'm not even sure anymore, it's all just a blur to me.

this really, really gets my goat! i wish people (general) would just acknowledge that what you feel is what you feel, logical or otherwise, and there's nothing you can do to change it - when you are given permission to grieve (both by yourself AND by others), the process is usually much more straight forward & often completed sooner, because you do what you need to do to process it. when people brush off what you're feeling or otherwise invalidate it (even if they mean well), it shuts the whole process down.

:hug: i'm so sorry that people were not understanding of how you felt. :hug:

[Anneke]

Yeah, I think it's a cultural thing. In Flanders people don't really talk about how they feel. We are expected to move on and try to stay strong. Whenever I brought/bring it up, I only got/get something like "Oh, but they're healthy now, aren't they?", implicating I have nothing to be whining about, even back when they were crying almost around the clock.

This post has been edited by Anneke: 30 August 2010 - 12:59 PM

[scrappycindy]

My girls only did about 3 weeks in the NICU. I still think about it and have sad feelings. For me it's mostly that our birth experience was not normal. I remember laying in my hospital bed while my husband was gone to visit our girls in the NICU 90mi away and asking the nurse if my babies would remember me. I stayed strong until that night... then when I was actually released. I fell apart at the doors of the NICU. I wish like everything I'd have put up a royal fuss to get to hold them before they were sent away. They were not in distress... just grower/feeders. I saw them swaddled up right after birht, then when they were strapped in their transport carriers. I can never have those moments back. Then in the NICU, I felt like I had to beg to hold them and only was allowed to kangaroo one of them once. Once they got out of the isolets, it was better... I just got them out myself and snuggled them... but they would not let me hold both of them together. It was 23 days this Mommy of twins, who carried them in pregnancy, wondering and wishing, got to hold both of her tiny babies at the same time. 23 days was too long. (we were given the reason for infection risk)

See, I'm lamenting... I am truely thankful that their NICU stays were basically uneventful, but every time I'd pass the "normal" nursery with walls made of glass so everyone could see in... I was reminded how my situation was not normal as I walked by empty armed.

They are healthy, happy 16 mo olds now...but yes, I still get sad when I think of it all.

[wondertwinsma]

Wow! I'm tearing up right now! I don't think about it regularly. It has been over 6 years since they were in the NICU. But my 24 weekers spent 122 days in the hospital. We had the most amazing NICU team who not only took wonderful care of our babies, but also helped us figure out how to take care of ourselves at the same time. But I do have moments when I remember and I cry...usually by myself. We participate in the March for Babies every year and listening to people tell their stories is really hard because it brings back so much of what we went through. I never felt a lot of guilt for my kiddos being born early, but I do feel like I missed out on the joy of birth. And I won't ever get that back! I grieve for that. I don't think I'll ever have a time when thinking about the whole experience doesn't bring tears. People ask all the time how we did it. I always tell them I did what I had to do and it became my job as a mom to be at the NICU. And going home without my babies was the worst and the hardest day of my life. I'm pretty sure that will never change.

[frostyfamilytwins]

Wow. It's really great to hear from so many folks who went through and still go through the same emotions I do from time to time. I know it never really leaves, but I guess it does get better in the fact that it doesn't happen as often. But when the emotions come flooding back, watch out. And I am right there with all of you in the guilt and grieving. From day one, I had a very stressful pregnancy. I thought that I had miscarried at 8 weeks, and then found out at 9 weeks that I was have having twins!

Though I was overjoyed with the knowledge that we were going to have two little ones soon, I was also spun into a world of stress and uncertainty when my OB and the ultrasound tech said that the babies were most likely mono/mono twins. I had never heard of such a thing, but I soon became an expert on mono/mono twins, twin-to-twin transfusion and IUGR babies. All I ever wanted was a nice, normal, relatively drama-free pregnancy where I may get occasional morning sickness and swollen feet, but I would be able to walk around with my growing belly and be able to leisurely talk about with friends and casually shop for baby things every few weeks. I never had any of that. I was told almost every week about something else that could be wrong with one or both of my babies. At 13 weeks, we were finally able to rest easy about the mono/mono thing as they were finally able to see a paper-thin membrane, but then at the same ultrasound our perinatalogist told us that it looked like we may be facing twin-to-twin transfusion problems since baby B (Will) wasn't growing as well as baby A (Andy). So for weeks and weeks, we were on pins and needles. I had to go for ultrasounds at least twice a week until shortly before delivering when I was going about every other day for an ultrasound and doppler readings. I couldn't shop for baby things because I wasn't sure if they were both going to even make it! I never got to go to a cute little baby boutique and hold up little outfits and daydream about how cute my little boys would be in them because I was always so consumed with worry for my little guys. Two days before Christmas my perinatalogist told me that baby B was not doing so well and to prepare for the possibility of him 'succumbing' over the holiday (succumbing were her exact words, I will never ever forget that), but to go ahead and have a great Christmas :headbang: Thankfully twin-to-twin transfusion was never their problem, Will was just an IUGR baby, but that didn't make the situation any less serious. We could have lost him or both of them at any moment. I lived with that thought for 28 weeks, and STILL felt guilty about delivering them so early, though I know they couldn't have made it any longer without something happening.

So it really hacks me off to have anyone tell me that I shouldn't feel so emotional about it all because of how well they are doing today. Anyone that hasn't been through any of this just has no clue whatsoever. Their reality is that you get pregnant, you enjoy it, you shop for baby things, you get a nursery ready, you have baby showers, you deliver your full term happy baby and spend a few days at the most in the hospital with your new baby in the room with you or in the nursery where you can pass by and wave, you load your bundle of joy in the car seat and go home. Their reality doesn't include almost daily ultrasounds, doppler readings for heartbeats, ultrasounds to make sure your baby doesn't have that heart defect they may have picked up at your OB office, being told to prepare for the worst, being told to go home and crawl in bed and not move for weeks on end only to end up on hospital bedrest a few days later anyway, and then having the staff OB who you don't know from anyone come in and tell you that your peri said that the babies have to deliver tonight. WHAT? I'm only 28 weeks, how can this happen? How big are they? Will they make it? What kind of problems will we face? How long will they have to stay here if they even make it? Will they be on oxygen? Will they have all those tubes? I don't even have their nursery ready...I don't even have cribs! I haven't had any baby showers because I've been telling the folks who want to give me baby showers to wait to make sure things go okay. AHHHHH :gah: Oh, and add all the NICU stress on top of all of that after they're born...

It feels so therapeutic to write about all of this and to read all of your experiences. I'll always carry the strong emotions with me in some way, but all of this helps alot. As I said before, those that haven't been through this, love their babies just as much as we do, but I do feel that you gain a somewhat different perspective on parenthood, priorities, etc. when you go through even one day of having your little one in the NICU.