Grieving the last few weeks of "what could have been"

[LeytonsMom10]

Anyone else experiencing or experienced the grieving process of the final weeks of what would have been your pregnancy after having a preemie?

My son was born at 30 weeks and 3 days, 2 weeks ago. He is in the NICU and will be there for a while. I feel like everything is breaking down now. The joy of having a new baby, no matter where he is, is no gone and the pain of the situation has started to set in.

I have tried to talk to other people about this but they don't understand. I wonder how much of this is grief and how much might be the start of ppd. What helped you though this.... if you went though it?

[MeepyCat]

Yup.

People kept congratulating me when my daughter was born, and I just kept feeling like I wanted to explain - it was not a joyful moment. Or alternatively, I wanted to scream. She was in a plastic box in the hospital with tubes up her nose, when she was supposed to be in my belly, kicking me in the ribs and learning to breathe. What part of that is good?

There is some real grief.

I also think that parents of preemies face different stresses than parents of full-term, healthy infants, and are more likely, over time, to find that they are exhausted and depressed. That's what prolonged anxiety does to us - it wears us out and wears us down. And then there's the thing where you spend what would have been your third trimester (you know, the time when you were supposed to make all the lasagna in the world, clean your house, and get your best friend to throw you a party) doing whatever you can, so that you can then come home... with what is, for all practical purposes, a newborn. It felt like being on a treadmill, like didn't we do all this newborn stuff in the hospital? Why aren't we on to the socially interactive baby part yet?

The NICU I was at had a social worker on the floor, who was very helpful. There are some NICU parent support groups - check at the nurse's station for flyers and activities and info.

[Bokonon]

Originally Posted by MeepyCat

Yup.

People kept congratulating me when my daughter was born, and I just kept feeling like I wanted to explain - it was not a joyful moment. Or alternatively, I wanted to scream. She was in a plastic box in the hospital with tubes up her nose, when she was supposed to be in my belly, kicking me in the ribs and learning to breathe. What part of that is good?

There is some real grief.

I also think that parents of preemies face different stresses than parents of full-term, healthy infants, and are more likely, over time, to find that they are exhausted and depressed. That's what prolonged anxiety does to us - it wears us out and wears us down. And then there's the thing where you spend what would have been your third trimester (you know, the time when you were supposed to make all the lasagna in the world, clean your house, and get your best friend to throw you a party) doing whatever you can, so that you can then come home... with what is, for all practical purposes, a newborn. It felt like being on a treadmill, like didn't we do all this newborn stuff in the hospital? Why aren't we on to the socially interactive baby part yet?

The NICU I was at had a social worker on the floor, who was very helpful. There are some NICU parent support groups - check at the nurse's station for flyers and activities and info.

ITA with this.

I found it so odd when I was congratulated when my first was born at 32 weeks. I didn't feel like congratulations were in order, but now I know they were.

But there was a special and unique phenomenon about DS's due date. He was home, in my arms, healthy, thriving, and we already knew each other SO well. He was still very much a newborn, despite being almost 2 months old, but he had been home for a couple of weeks and we had a groove going. It wasn't perfect, and it wasn't how I imagined it or would have wanted it, but it was just so wonderful having him home after 6 weeks that his due date was more sweet than bitter.

I can't call it a gift. Even with my second, who was 34 weeks and only spent 10 days in the NICU - having a preemie sucks, no doubt about it. But there really is something special about it. Your baby will be a newborn longer than most. You will know your baby before you even expected him to be born. When he comes home, caring for him will be a piece of cake.

I know it feels like the NICU is forever. It's not, I promise. Many first-time moms have no idea what to do with their baby when they get home from the hospital, but you will. Bringing my son home was a joyous occasion, and I had no doubts that I could handle it by that point. But when he was a couple of weeks old, even a month old - I was terrified.

Hang in there. Talk to your partner about your fears. Keep a journal to have a better idea of your mood over time. Don't be afraid to ask for help.

[aramat]

I had a hard time looking at my full-length reflection and also with not putting my hands on my abdomen... The baby was supposed to still be there, or at least with me. My preemie is 10 months now, and I still remember that helpless sadness, frustration, and shock. ... I really couldn't talk to anyone as we are in Brasil and my Portuguese was very weak. Other NICU parents would probably be your best bet, and a therapist. Exercise is a very good idea. My hospital was in walking distance from home, and those walks back and forth every day probably saved my sanity. Try to eat well, and just focus on what you can do, like pumping milk, reading about preemie care and your rights in the hospital... Keeping a journal or a blog may be helpful, too.

It is a hard, terrifying time, and those who haven't been through it just cannot begin to understand. Hugs to you!

[MeepyCat]

ITA with Aramat, except that if you had a surgical delivery you should be careful with the exercise. Maybe go sit outside sometimes. Don't plan for walking to be your major means of transportation for anything much longer than a city block.

I seriously overdid some things about a month after my c-section, and wound up in terrible pain.

[justKate]

I'm one of the "lucky" NICU mams, if you can call it that--my DD was full term but landed in the NICU for other reasons. I grieved the loss of our first weeks together for a long time. That was supposed to be OUR time, spent cuddling in bed together. Instead she spent it alone in a box with tubes and wires everywhere. I was afraid to touch her because those damn machines...

The longer you're there, it seems like the more people expect you to start being "normal" and you really can't because your baby isn't with you.

For me, there was a lot of sadness and crying, but after 20 months of reflection, I think it was more like PTSD than PPD. (Flashbacks to the birth, that sort of numb, movie-like feeling....)

Take care mama. It WILL get better.

[aikigypsy]

I was disoriented for his first couple of weeks in the NICU, when he was in an incubator and hooked up to an IV and gavage tube, then just the gavage tube.

I'm angrier about the 5 weeks of almost-ready, when he was in the intermediate/step-down part of the nicu. He was basically in for occasional, mild, mostly self-resolving apnea spells that whole time. I could have done everything at home. He got a little yeast infection on his groin from all the time in disposable diapers. I really felt like he would have been better off at home... but I couldn't persuade anyone else around me that that was the case.

He came home very late, 41 weeks, not the 38-or-so I'd been told to expect. Now that he's here, he's the size of a regular, full-term newborn. Sometimes, in the weeks when he was in the nicu, I'd be half asleep and have gas, which would feel like the baby kicking inside me. Those phantom kicks made me feel like I was still pregnant, almost.

[SilverFish]

dd was only in the hospital for 2 weeks, and i still know that feeling. i was supposed to have a homebirth! we were supposed to spend our first two weeks cuddling in bed and learning to breastfeed. i was supposed to have the last 1-2 months of her gestation to clean my house and fill my freezer and buy baby clothes. instead we were rushing to the hospital with a dirty bathroom and an empty fridge and barely any baby supplies at all. and i spent the first 2 weeks of my babymoon driving back and forth to the hospital and straining my stitches (i had to get them fixed at 3 weeks) climbing the stairs of my apartment building and sitting in hard chairs in the NICU.

it was really hard to get over that feeling of loss and pain. and i definitely feel a tinge of sadness for the 3 or 4 friends who've been pregnant longer than me since then, and when i see really pregnant people walking around. and i have a stronger drive to "do it over" than i think i would otherwise.

one thing that really helped was thinking about the extra few weeks she's been born as a gift. i get to know her for a whole 6 extra weeks. it doesn't really cure the pain of the hospital experience, but it does help to refocus the feeling of disappointment over losing out on the rest of the newborn experience.

[beth144]

you will probably go through a whole range of emotions several times over as the the next few weeks to years go by my little 28 weeker just turned 3 and i have another baby who is 2mo (born healthy at home at 38wks). the birth of dd3 has been very healing in that respect if this is your first child things will probably be a little easier is some ways for you. i spent a year in and out of ppd and those first few weeks home were actually harder than in the hospital because i had a super active 2.5 yo to take care of. please dont be afraid to ask for help you start suffering from ppd, i didn't get help when i probably should have.

[ShanaV]

I also really missed having a third trimester. I didn't get 9 months of pregnancy, only 6.5. It sucks. It was over way too fast. It took a good 4 months for me to show, and then it was over and done with 2.5 months later. I only got a tiny bit of time to even look pregnant and show it off. Damn! I also really wish that my babies could have developed all the chub they would have gotten in that third trimester instead of coming out with their arms and legs the size of my fingers.

My babies were born at the same gestational age as yours: 30+5. It's awful.

[CGsMom]

I felt that way when my 27 weeker was still in the hospital (11 week NICU stay). I think some of the guilt came from feeling like it was my fault for putting my family through all of it. My DD is now 10 months actual and I still have pangs of grief over that missed time, especially when pregnant friends ask for advice about that time or want to talk about pregnancy. No doubt about it, you were cheated out of a great time for your pregnancy and most people will never understand that.

I had a hard time talking to anyone about it, even my closet confidants like my mother and older sister. I spent so much time at the NICU that I became really close with several nurses. If you are open, they can be a great source of support.

It is really important to find someone. Your mate, a best friend, a nurse, a social worker....anyone that you feel comfortable talking with about these issues. Don't bottle it up.

Hang in there. It gets better.

[Amys1st]

Welcome!

The day I delivered my 24 week baby I was told that day I was starting to look prgnt. It was sad I fit into my normal clothes so quiclkly. After I got home from the hospital and dd2 was stilll there (for 3 more months) I found my order to have the diabetic test done at 26-28 weeks.

DH and I suffered PTSD for many months. Maggie is now 4 1/2 and totally fine, but reading these posts, it really brings you back.

[Phoenix~Mama]

I'm there now. For some reason it took 3 weeks for the anger and loss to really set in. I think I was just so releived that DS and I were alive that it took awhile for the loss to kick in. And this is week 36... I would have had my home visit for my homebirth on Monday. And it just sank in that I'm severely exhausted, but not the happy exhausted of having a snuggle newborn all nestled next to me in bed nursing all night... no, this is the crazy anxiety filled exhausted from running to and back from the hospital every day and instead of snoozing through midnight nursings, I have to get up and pump, which is impossible to snooze through.

Everyone keeps telling me, "Oh, he'll be home before you know it." And I lost it yesterday when the 500th person told me that. People have been telling me that for the last three weeks and the last three weeks have been the longest of my life and the most depressing. I have to keep leaving one of my children to go be with the other, and I HATE it.

Meh... yeah sorry... really not in a good place right now. I have called my therapist and will see her on Tuesday. I guess we just keep hanging in there.

[Amys1st]

Originally Posted by Phoenix~Mama

I have to keep leaving one of my children to go be with the other, and I HATE it.

I can totally relate to this thought. Hang in there mama. Feel free to pm.

[LeytonsMom10]

Thanks everyone for all the responses. Every day is getting better. When my son has a good day, I have a good day but the days that he has issues it breaks my heart and sets me back. Today was the 1st day he could wear clothes and I almost lost it when I was holding him thinking it has taken us 24 days before he could wear clothes!!!!! Also, we just started to work on BF and it took 20 something days to do that where as I changed dr 25 weeks into my pregnancy because my dr was not as supportive with the natural birthing process and BF right after birth. That was the one thing I wanted more than anything and now we are lucky if my son dosent have a Brady while he tries to feed and can only go a few min at a time.

Sometimes out of no where I just think to myself.... "it shouldnt be THIS hard!" but this is what was delt to us and we are thankful for our son and that he is growing and alive.

I understand the exhaustion... I keep telling my boyfriend I am TIRED at the end of the day and his response is "how are you tired from sitting in the NICU all day?" I want to say to him, " well I wake up at 5am to pump for 20 min, spend 5 min cleaning up after pumping, go back to bed, wake up at 7 am to pump and clean then get ready for the day, call NICU to see how babys night was, take the dogs out, feed them, find something to eat, drive to hospital that is 30 min away, park and walk in takes 10 min, wash my hands a bizzillion times, pump again, clean pump again, wash hands again, see baby, take babys temp, change diaper, take baby out of box, try to BF, put baby back in box, pump, clean pump, wash hands again, take back milk to nurse, find something to eat, and have a break time! then its back to pump again, wash pump, wash hands, take milk back to nurse, take babys temp, diaper, out of box, attempt BF, kangeroo for 3 hours, baby back in box, pump, wash pump, take milk back to nurse, mommy break, find a snack, pump again, change baby diaper, check temp, take baby out of box attempt bf, baby back in box, wait for him to settle down then leave for the night. get home, pump, wash pump, eat dinner,get ready for the next day, call to check on son, pump again, wash pump, watch tv, pump again, go to bed. I am tired of pumping, I am tired of washing my hands, I am tired of the breast pump parts to clean, I am just TIRED".

Thats the first time I have really analyzed my day in the NICU. Not to mention the 24 hours I spend worrying, stressing and thinking about my baby... like that dosen't lead to exhaustion!

With all of that said, I really don't have a place to bitch and complain. There are 2 babies in our pod that were born at 24 weeks, one of them is 3 weeks old and one of them is 38 weeks old. They both have some serious issues and when I hear them having problems and I look at my son who just needs time to grow I am thankful that he is where he is and feel lucky that we didn't have him sooner.

Thanks for letting me vent. =)

[MeepyCat]

LeytonsMom, good gawdamighty, you are ALLOWED to complain! Whine, vent, kvetch, sob, shriek, rage and the injustice of it all, any time you like. We do what we need to do.

When my DD was born, a friend of mine offered me her notes from a lecture on the breastfeeding protocols in use at the NICU at Rush Presbyterian Hospital. The hospital has worked to increase breast feeding rates for NICU patients by decreasing barriers and offering assistance and support to mothers. (Totally awesome work.) One of the things that helped me *immensely* was this piece of advice (emphasis mine):

"Do not have moms set an alarm for a night-time pumping; many moms with premies in the hospital already struggle with anxiety and insomnia. Moms are encouraged that if they happen to wake up, they should go ahead and pump, call the hospital to check on their baby, and go back to sleep; if they don’t happen to wake up, just pump first thing in the morning."

It's highly possible to quibble with this advice for all sorts of reasons, but for me, not getting up in the middle of the night was a godsend.

Also - we don't have babies early just for fun, y'know? When babes are born so much before term, the reason generally has some serious impact on the mother. After my daughter's birth, I had to recover from major surgery and some nasty blood loss - I was occasionally literally asleep on my feet. I was terrible at keeping ahead of the pain with medication, too, and pain is tiring. My daughter's birth and the series of medical crises that followed were traumatizing - trauma is also tiring.

At this particular stage, you could probably lie in bed all day and still be tired. For really good reasons. Go easy on yourself, and tell your boyfriend to go easy on you too.

[Phoenix~Mama]

Originally Posted by LeytonsMom10

I understand the exhaustion... I keep telling my boyfriend I am TIRED at the end of the day and his response is "how are you tired from sitting in the NICU all day?" I want to say to him, " well I wake up at 5am to pump for 20 min, spend 5 min cleaning up after pumping, go back to bed, wake up at 7 am to pump and clean then get ready for the day, call NICU to see how babys night was, take the dogs out, feed them, find something to eat, drive to hospital that is 30 min away, park and walk in takes 10 min, wash my hands a bizzillion times, pump again, clean pump again, wash hands again, see baby, take babys temp, change diaper, take baby out of box, try to BF, put baby back in box, pump, clean pump, wash hands again, take back milk to nurse, find something to eat, and have a break time! then its back to pump again, wash pump, wash hands, take milk back to nurse, take babys temp, diaper, out of box, attempt BF, kangeroo for 3 hours, baby back in box, pump, wash pump, take milk back to nurse, mommy break, find a snack, pump again, change baby diaper, check temp, take baby out of box attempt bf, baby back in box, wait for him to settle down then leave for the night. get home, pump, wash pump, eat dinner,get ready for the next day, call to check on son, pump again, wash pump, watch tv, pump again, go to bed. I am tired of pumping, I am tired of washing my hands, I am tired of the breast pump parts to clean, I am just TIRED".

OMG!!! YES!! That is my day too! Except sometimes I forget to eat because I'm so bloody stressed and anxious and substitute the dogs for my DD.



YES! It is tiring. And I find myself snipping at everyone, especially my Father who can't figure out why I'm so tired and irritable. Hmm, gee, I don't know...

You are so not alone honey.

I wish more NICU Moms were open to talking. I try to talk to some of them in the waiting room during our short breaks between cares and pumping, but most seem not up to it. Maybe I'm strange, that talking about all this helps me?

pumping now bye the way. lol

[1mommy]

Oh yes. I kept on getting my weekly pregnancy updates. When my baby was home and 6 weeks old I would get emails about being overdue etc. It was the hardest worst time in my life having my baby early and in nicu. We live about 2 hours away and have another child and it was HELL having to be way from one to see the other. It felt like a piece of my heart ripped out and staying there. I'm so glad it's over, I don't know how much more I could handle. I totally relate to each reply and post on here.

[Amys1st]

Originally Posted by MeepyCat

LeytonsMom, good gawdamighty, you are ALLOWED to complain! Whine, vent, kvetch, sob, shriek, rage and the injustice of it all, any time you like. We do what we need to do.

When my DD was born, a friend of mine offered me her notes from a lecture on the breastfeeding protocols in use at the NICU at Rush Presbyterian Hospital. The hospital has worked to increase breast feeding rates for NICU patients by decreasing barriers and offering assistance and support to mothers. (Totally awesome work.) One of the things that helped me *immensely* was this piece of advice (emphasis mine):

"Do not have moms set an alarm for a night-time pumping; many moms with premies in the hospital already struggle with anxiety and insomnia. Moms are encouraged that if they happen to wake up, they should go ahead and pump, call the hospital to check on their baby, and go back to sleep; if they don’t happen to wake up, just pump first thing in the morning."

It's highly possible to quibble with this advice for all sorts of reasons, but for me, not getting up in the middle of the night was a godsend.

Also - we don't have babies early just for fun, y'know? When babes are born so much before term, the reason generally has some serious impact on the mother. After my daughter's birth, I had to recover from major surgery and some nasty blood loss - I was occasionally literally asleep on my feet. I was terrible at keeping ahead of the pain with medication, too, and pain is tiring. My daughter's birth and the series of medical crises that followed were traumatizing - trauma is also tiring.

At this particular stage, you could probably lie in bed all day and still be tired. For really good reasons. Go easy on yourself, and tell your boyfriend to go easy on you too.

Rush is in Chicago which is near us. I heard this lady who started this program speak at the LLL conference in 2007. Actually, several of us from this forum met up and heard it together. I think you should give yourself a break and rest. You might notice a big difference. Pump in the morning, but make sure you mark that milk AM first thing. It will not be as calorie ridden as your more in the day milk. Mainly because its been sitting all night in your breasts. hang in there! Also complain away!

[jillybeans]

OH hugs mamas! We are a unique crew, and it's so nice to see the outpouring of those nasty emotions! My baby is now 14 months, but the memories are still fresh.

Some things I learned.
Believe in the future. Find comfort in the experience...you will be able to help others someday.
Do NOT be afraid to ask for help. You will want to do more than you should because you feel you you're doing something...anything...for your baby.
The loss of what could have been is a real loss. Work it out, talk about it, allow youself to grieve. It took me months to move past it all.
Don't be afraid of those feelings you feel when you first bring baby home. We lost that biologically important bonding time with our babies, and sometimes it doesn't feel "normal" I often felt I was taking care of someone else's baby, and I'm an extremely touchy feely lovey dovey mama! This was devastating.
Do look into help for PPD. Most NICU moms I have talked with have had it.

I do admit the biggest struggle of all was the pull between my older children and my baby. The older girls were 3.5 and 18 months. They NEEDED me, and I couldn't be with them all day. Plus, we were in a new city in a foreign house. Poor bears.