Post your question here about Life after the NICU

[Amys1st]

Yay we are here!!

I have been talking to a bunch of you for months about the nicu and a lot of us have been out for a few weeks, months, years, and a few just this week.

We have had Maggie home 9 weeks now. We are now getting back to normal. Normal in between meds, appts, life etc. We can now say we love just staring at our new dd and are relaxed like we were w dd1 at this point.

We as a couple went thru a post trauma stress disorder. I think we still have it and it gets better everyday. Anyone else and what did you do to feel better?

[Lousli]

I'm not sure if I had/have PTSD, but definitely was extremely depressed after the birth of my daughter. Unfortunately, I didn't really realize how bad it was until about March of this year (when she was 15 months old!) and started therapy in April. We've talked about all kinds of things going on in my life, but a huge amount of what we talked about is Hazel's birth and her NICU time. Her birth was very traumatic for me, especially since I had an epidural with my first birth and viewed my second pregnancy as a chance to gat a "do-over" and make all the right choices. I planned to do hynobirthing, but ended up with a ton of complications and interventions instead.

[sweetpeasmom]

Well we've been out for 18 mths now. I was pretty messed up after her birth. First few weeks i felt totally alienated from her, like it wasn't even my baby, I barely went and saw her. I did end up seeing a physchologist during this time, she focused on moms in these situations so that helped big time. I felt a whole range of things, guilt, saddness, denial, anger. Once I began to be able to hold her, I started to get better.
I'd say I'm ok now. I still have "issues" I am for one very sad that i'll never have a normal pregnancy, this is our last one for sure. My first wasn't normal either. I never got to enjoy the third trimester. I see pregnant women and sorta feel a bit jealous and sad.
I'm also having some dreams at night still. Like the other night I dreamt I gave birth to Megan all over again, same weight but thing is she came out acting like a 18 mth old even though she was so tiny. I've been having some bad dreams also. One dream she died in, that really disturbed me.

[mimid]

I want to know when the greif over "what could have been" lessens to the point where I can think about or talk about their birth without crying. They've been home for 2 1/2 months now and we are so blessed that they were just in the NICU becuase of their size and to learn to suck better. No monitors, meds, therapy, no signs that they were preemies except for their size and that they aren't doing al the things a 3 month old does. (Though they are catching up quickly and are more like a 2 monther than a 6 weeker.)

But seriously, do you ever get over not being able to see much less hold your babies for 2 days? And the anger at dh for not being there for me as much as I needed or of letting other people see my children before me. What do you do about that? I've told him and he just says that he didn't realize and that it is too late to do anything. But it doesn't help.

I'm trying to focus on what is and what will be with our future kids. No more thoughts about trying to convince dh to have a HBVAC. I AM having one. No more "I think I might homeschool" conversations. I am through at least 1st grade. Too bad dh. I'm doing it and I'm already planning it!

[fireant]

I still battle the NICU demons. Now I think that all the trauma from the birth is even affecting me sexually. I have absolutely no interest dtd since the birth because it reminds me of the horrors of that hospital.

[Amys1st]

Originally Posted by mimid

But seriously, do you ever get over not being able to see much less hold your babies for 2 days? And the anger at dh for not being there for me as much as I needed or of letting other people see my children before me. What do you do about that? I've told him and he just says that he didn't realize and that it is too late to do anything. But it doesn't help.

I can relate. I did not get to see Maggie for two hours after the birth and then it was to say good bye as she was transported to the other hospital. After she came out, I told DH to go with her so I was alone after that which was fine. My concern was the baby. They showed me a pic but it was only a minute or so that I saw her. I didnt see her until two days later when I was released. We were not able to hold her for a month. I was not able to breastfeed her for 7 weeks. Not being able to be w/ her 24/7 was also hard.
The worst part was seeing my dh and dds suffer. For dd1 not having the "take the baby home etc" that most older sibs have. And then not seeing her sister for 3-4 weeks after. For DH seeing him in pain over the birth, his wife in pain etc and then the trauma/drama of the nicu. And of course everything MAggie had to go thru. For me seeing my family suffer is worse than anything I went thru.

For a long time I was angry at people trying to see us or talk w us the following weeks. Some people were determind to speak to us. We would not speak to anyone since we could not have a conversation w/out breaking down for several days much less take a phone call. Also questions people would ask were a bit much. We both felt like people invaded our privacy but now we are over that.

[ApplePieBaby]

Originally Posted by mimid

But seriously, do you ever get over not being able to see much less hold your babies for 2 days?

I haven't held Elora yet- well for a few seconds while they changed the linen out from under her I got to lift her up- but I haven't been able to hold or kiss or cuddle her yet- and she's 4 weeks old today.

My friends saw her before I did too... but at least DH had brought me a picture & I guess I had actually kissed her on her way out of the operating room- but I don't remember that thanks to the narcotics they had me on.

[jkpmomtoboys]

My preemie was born at 29 weeks six years ago.

I didn't see ds for at least a day and didn't hold him for 5 days, and didn't hold him for more than a few minutes with LOTS of tubes for weeks.

You know what--you prioritize and you get over it. No, you don't get over having a preemie, but you do get over those little things. Eventually you are able to move on and enjoy what you did get.

I get pissed because my son was both sets of parents' first grandchild and what a sh&tty way to hold your first grandchild. Tubes and wires and sh&t everywhere. But that's just the way it is. And we all came out of the situation stronger and more appreciative of everything.

So you lose some things but you gain a whole lot more, intangible, things when you have a preemie. It's just really hard to believe that when you're in the thick of things...

[Amys1st]

Originally Posted by ApplePieBaby

I haven't held Elora yet- well for a few seconds while they changed the linen out from under her I got to lift her up- but I haven't been able to hold or kiss or cuddle her yet- and she's 4 weeks old today.
.

We did that too. While our nurse changed the sheets in the isolette Dh held her in his hands. I took a pic and his hands look huge. I then did the same for her weigh in.

pic:
http://img.photobucket.com/albums/v6...t/DSCF0021.jpg

[sweetpeasmom]

Originally Posted by mimid

But seriously, do you ever get over not being able to see much less hold your babies for 2 days? And the anger at dh for not being there for me as much as I needed or of letting other people see my children before me. What do you do about that? I've told him and he just says that he didn't realize and that it is too late to do anything. But it doesn't help.

I'm trying to focus on what is and what will be with our future kids. No more thoughts about trying to convince dh to have a HBVAC. I AM having one. No more "I think I might homeschool" conversations. I am through at least 1st grade. Too bad dh. I'm doing it and I'm already planning it!

No you don't get over it but like you said you focus on what is at the present. I didn't see her for almost 24 hrs, didn't get to hold her until 3 wks later. It was heart breaking, it was difficult, it hurt my bonding issues I had in the beginning. I am healing, we are definitely bonded thats whats important now. I'm not over it, never will be but I do know I got one healthy beautiful daughter that I love so very much (well I got 2 dd's acutally that I love very much

[Amys1st]

Its true you may never get over it. Dh and I say we got cheated this time around. But its all behind us and now we just want to focus on this baby and her sister.

[munkeesmama]

I think we're pretty much in a routine however I find that my preemie is my HARDEST newborn. All she does is cry. She doesn't cry if she's held/ She likes the sling ok. but even then fusses. I have 2 older children so i can't hold her the whole time. she has been seen by the ped who says medically nothing is wrong. I'm wondering if excessive crying is normal in preemies? I love my daughter to pieces but there are definitely times i don't feel very bonded to her. Part of me says this could be normal, another part feels horribly guilty. I am on meds for depressiona nd starting therapy soon.

[fireant]

Originally Posted by munkeesmama

I think we're pretty much in a routine however I find that my preemie is my HARDEST newborn. All she does is cry. She doesn't cry if she's held/ She likes the sling ok. but even then fusses. I have 2 older children so i can't hold her the whole time. she has been seen by the ped who says medically nothing is wrong. I'm wondering if excessive crying is normal in preemies? I love my daughter to pieces but there are definitely times i don't feel very bonded to her. Part of me says this could be normal, another part feels horribly guilty. I am on meds for depressiona nd starting therapy soon.

Marlow cries a lot too. Her ped also gave her a clean bill of health. It's so frustrating not being able to calm her down.

[sehbub]

Sam does the crying thing too. Doing it right now, actually.

And I completely relate to the concern for your family over yourself that Amy mentioned. I missed DSD2's birthday because I was in the hospital, then I missed Easter with my family, and then when Sam finally was born, it was several days before the girls got to see their baby sister. Not as long as some, but difficult to explain why we had a baby they couldn't see or touch. Because to a 4 year old, that's "not okay, mama. I want my sissy."

Sam is 14 wks old today, so we've been out of the NICU for 10wks. Sometimes it seems like yesterday that I brought her home, shaking the whole way, and other times it feels like she's been here forever.

Also, Sam is one month old adjusted today. She's just now starting to look right at us and track our faces with her eyes. Is that normal? Or should she be further along?

[boscopup]

On the crying thing... Have you checked them for reflux? Joshua used to cry whenever I laid him down, but he was fine if I was holding him upright. It was worse at night. He also spit up *alot*, which is what tipped off the ped about the reflux, but babies can also have "silent reflux" where they don't spit up. The crying didn't really start until he was about 4 weeks old, and that happens to be right around when reflux damage starts to really get painful. We started Zantac, and later switched to Prevacid (it was *flavored*), and both did wonders for the crying. I had to sleep with him on my chest in the recliner for about a month, because he couldn't lay down on his back without being in pain. His cry was also a painful cry, btw.

Something to think about, as preemies tend to be more prone to reflux issues early on. Joshua was off the meds by 6 months, thankfully. The Zantac didn't cause any side effects for him. The Prevacid gave him slightly runny BMs.

[munkeesmama]

Originally Posted by Marlow's mom to be

Marlow cries a lot too. Her ped also gave her a clean bill of health. It's so frustrating not being able to calm her down.

Glad to know i'm not the only one. It just seems like irt is constant. I hear her whimper and can totally feel my blood pressure rise. It's hard for me to decipher weather i'm mad or just scared. Ya know? I feel guilty at times, but I think I'm starting to tune some of it out. I means the crying is incessant!

[munkeesmama]

"Also, Sam is one month old adjusted today. She's just now starting to look right at us and track our faces with her eyes. Is that normal? Or should she be further along?"

Sounds like she is just where she should be. tracking and focusing starts around 1-2 months. My daughter isn't tracking at all or focusing. She had surgery for rop and while the rop has regressed i think there was damage that can't be fixed (at least for a long time). So i think all of that is very normal.

[munkeesmama]

Emma had a ph probe done twice both times nothing really showed up that would indicate it. Her doctor started her on zantac since she sit up a bit. It has stopped the spitting upo but not the crying. And we don't notice a difference in her sitting up or lying flat.

[jkpmomtoboys]

I just want to say that the day we had the ph probe done was the worst day in the entire NICU stay. Ds desatted and had to be bagged every 5 minutes for 24 hours. Horrific....and it turned out we had severe reflux (duh). So I suspect you guys don't have reflux....uggh so sorry...

[Amys1st]

I do remember the drs saying most of the babies in the nicu- esp the preemies leave w reflex of some sort. Some have the gerd too. Maggie has a slight touch. Never spits up, but if we a few more hours between the zantac, she notices.

Maggie did that crying for about a week after she came home. I held her constantly for about a month after the fact. I am now just getting where we can lay her down for a nap and also put her in a seat at meal time to watch us. She also grunts - a lot! The neos told me this is normal.