Does it still hit you like a ton of bricks? The NICU experience still lingers
Posted 21 August 2010 - 01:02 AM
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.
Posted 21 August 2010 - 07:21 AM
Posted 21 August 2010 - 07:30 AM
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
Posted 21 August 2010 - 08:44 AM
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.
Moderator Health Issues/Special Needs & 5-11 Forum
Josie 1-06-00 (36 weeks)
Jack 1-02-03 (36 weeks)
Mitchell & McKenna 4-25-05 (28 weeks)
Babies B&C always in my heart (1-04-05)
Posted 21 August 2010 - 09:51 PM
I hope everyone finds peace with their experience and I'm sure we all became stronger people and parents as a result.
Posted 21 August 2010 - 10:29 PM
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.
Posted 21 August 2010 - 11:55 PM
Posted 22 August 2010 - 09:07 PM
1 Year! Jazz 21lbs 4oz Jess 17lbs 4oz
2 Years Jazz 29lbs 35 1/2 in Jess 24lbs 33 1/2 in
4 years jazz 36lbs Jessy 30lbs
Jessy's Open Heart Suregery to correct ASD 1/7/10(2/15/10 went back to school)
RIP "Pa" Troy Lee Dooley 1/9/10
Posted 23 August 2010 - 06:02 PM
Posted 26 August 2010 - 01:27 PM
Posted 27 August 2010 - 12:15 AM
Posted 29 August 2010 - 01:25 AM
Posted 29 August 2010 - 08:16 AM
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.
Posted 29 August 2010 - 10:06 AM
Posted 30 August 2010 - 05:57 AM
Posted 30 August 2010 - 09:00 AM
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:
Posted 30 August 2010 - 12:55 PM
This post has been edited by Anneke: 30 August 2010 - 12:59 PM
Posted 01 September 2010 - 02:20 PM
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.
ID twins born at 34 wks + 2 days via c-section
Baby A's water broke at 12:30am and 2 1/2 hours later we had babies! They were transported 2 hours after birth to larger hospital 90 mi away
Hannah Michelle - 4/16/09 2:59am; 4lb 1oz; 17 in; breech; 23 days in NICU
Mary LeeAnn - 4/16/09 3:00am; 4lb 10oz; 19in; 20 days in NICU
Update @ 3 yrs: Hannah - 30.5 lb and 37.75in Mary - 31 lb and 38in
Posted 01 September 2010 - 05:50 PM
proud mom to Jacob and Samantha 3/31/04 (born at 24 w, 3 d; 1 lb 7 oz, 1 lb 9 oz)
This is our 6th year participating in the March for Babies to raise money for the March of Dimes. Please visit our website to see a video montage of our miracles; March for Babies website
Posted 02 September 2010 - 07:30 PM
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.