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If you knew you would have a preemie/nicu baby

post #1 of 23
Thread Starter 
I'm forum crashing
I don't know exactly what I'm looking for, advice or opinions?
I know at the end of the day, I have to make my own decisions, but I wondered if anyone here had faced a similar circumstance?

I have lost 3 babies (2 first tri, and 1 early second tri). I have no LC.
At this stage, we are looking into the possibility of trying a final time.

I have a congenital uterine abnormality. In simple terms boils down to basically being half a uterus.
If (heaven forbid) I can maintain a successful pregnancy, the chances that I will end up with a preemie/nicu baby are very high.
I anticipate that it will not be an easy pregnancy by any terms, and my doctors understand this also, and I will be managed by a neonatologist from the word go. I'm willing to do whatever is necessary, bed rest, etc to be successful.

I've suffered a lot of guilt over my miscarriages, knowing that each of them were perfectly healthy and growing bubs, and my body was the cause of their deaths. I worry alot about the preemie issue, and the guilt that I would feel over that. I hate to think that my body could be the cause of pain to my child.

We really want children. Really. I cannot imagine my life without a child. But is it irresponsible of me to go ahead with a pregnancy? Do mamas of preemies think that wannabe mamas like me should get over themselves?
And if I was successful, but did have a preemie... would others think it was my fault?

TIA ladies
post #2 of 23
This is a very good question. My uterus has a checkered history, (bicornuate uterus, 2 LC - one preemie, 2 1st tri m/c, 1 2nd tri m/c), so it was something we took into consideration with this last pregnancy. And then, at 12 weeks, we learned that she has a birth defect that would definitely mean a lot of medical stuff and hospital stays and surgeries, etc. The whole pregnancy was rough, both physically and emotionally, and we got to 38 weeks, with the help of meds and bedrest, and had a medically very necessary c/s.

So would I do it again? (we really want(ed) one more). I don't think so. If I had this one to do over, with foreknowledge? That gets into a very grey area, where you start saying, well, I could sure do without all the medical awfulness, but would she be the same kid? So I think I can't answer it, no matter how much of a sci-fi geek I am. But I can tell you, I have a Mirena IUD, and no plans to get it taken out. It's rough having a medically needy kid.

However, if you're talking about having a 35-weeker or a 30-weeker or a 25-weeker, you're talking VERY different things, as far as long-term effects on your life and your child's life, as well as the short-term of the initial stuff. I had a 34-weeker with my first DD, and I really don't ever feel I have anything of value to contribute to preemie parenting discussions, as she was and is super crazy healthy. But my friend who has a micropreemie will probably not have ANY of the normal first year baby issues.

If you're looking at definitely having a pre-35 week preemie, you might want to read some experiences of preemies' families, and talk with your partner and perhaps a neonatologist or pediatrician, and almost certainly a therapist and a NICU social worker, to get an idea of what you're going to face and to build a game plan for how to get through it with your sanity (mostly) intact and your family together.
post #3 of 23
I feel your pain. That is a difficult situation to be in. Not fair to be in it. Is there anyway you could use a surrogate?
post #4 of 23
Thread Starter 
Surrogacy - we've considered it. Selfishly, I really want this for myself.
It seems so unfair that I don't get to grow and bond with a baby like everyone else. I want to have the belly, and feel the kicks, and go through the 'rite of passage.
It may come to that though.

Yes, I plan to have a consult with neonatologist before we TTC.
post #5 of 23
i don't know. i had a 35 weeker, so i barely even qualify! as corasmama said, there is a world of difference between a 35 and 25 week preemie. i totally get the urge to do it yourself, but i think it's similar to someone being a genetic carrier for a serious condition. if you knew you were a carrier, would you risk passing that on to your kids? i think, for myself, i probably wouldn't. i would do my best to grieve, move on, and have babies through adoption. that is my own preference, yours may be different.

i think you need more information though. are your chances pretty good for 30 weeks at least? anything less than that, and you are really rolling the dice for serious complications due to prematurity that aren't going to end with the months long NICU stay.
post #6 of 23
Hmmm, interesting discussion, and one I have been thinking about too. We adopted our 29 weeker when he was 4 weeks old. Now, at 10 months, he is in great health, and showing no signs of developmental delays. Also, since we adopted, we missed the whole 1st few weeks of tube feeding, spending all our time in the NICU etc. But, we also had the choice....we were contacted right after he was born, asking if we wanted to be considered for the adoption. It took some soul searching, but we decided to be considered. Of course, this was the right decision at the time. We didnt find out we had been chosen until he was 4 weeks old (we only spent 1 week in the NICU with him).

All that said, if it came down to adopting another baby born that early, we probably would not do it. Here are my reasons: Now that we have a preemie, I read alot on preemies, and we are a very lucky family-many preemie's born that early are not as healthy as ours. ALso, having a child and spending lots of time in the NICU with another one, would be a huge challenge.

Just some thoughts...good luck with your decision, sounds like a tough one!
post #7 of 23
Thread Starter 
Thanks for the insights so far. It's not easy subject matter.
As far as gestation... that's something I will have to question the neonatologist about more specifically. I would say that the odds of making it to at least 30 weeks are good, and I know that some women with this condition do make it close to term. I guess I'm just sort of preparing a worst case scenario...

I know someone mentioned adoption vs surrogacy - I just wanted to say that both are on our list of possible options, should it come to that. However,both would involve a 5+ year wait.
post #8 of 23
oh, i also wanted to add... if i knew you in real life, i would absolutely support you 100% in any route you decided to take to add children to your life. i don't think that deciding to have a biological child even with a high chance of prematurity makes you a bad person. i might not make a similar choice for myself, but i can completely understand and support your decision in that. as for the people who actually do know you in real life, how much of your condition do you need to share? if you keep the details private, then you don't run the risk of hurtful or misinformed comments from your friends and family.
post #9 of 23
Quote:
Originally Posted by SilverFish View Post
oh, i also wanted to add... if i knew you in real life, i would absolutely support you 100% in any route you decided to take to add children to your life. i don't think that deciding to have a biological child even with a high chance of prematurity makes you a bad person.
I agree!
post #10 of 23
Thread Starter 
Quote:
Originally Posted by SilverFish View Post
oh, i also wanted to add... if i knew you in real life, i would absolutely support you 100% in any route you decided to take to add children to your life. i don't think that deciding to have a biological child even with a high chance of prematurity makes you a bad person. .
Thank you both. It makes me feel a little better.
post #11 of 23
Like most others, I think it depends on how premature the risk is. If there is a good chance you will get close to 32weeks, it might be worth the risk.

If it is a greater chance that you will deliver at the edge of viability, I, personally, wouldn't do it. The risks of long term physical or mental disability are very high and I couldn't, in good conscience, take that risk.

My babies first minutes on this earth were being pulled suddenly out of me, tubes shoved in their throats, needles in their veins. I couldn't even see them until they were 2 days old. Their first month of life was spent in a hospital with other people taking care of them. It was not peaceful or a good bonding time.

As far as having that bonding time during pregnancy, I know the idea of missing out on that is hard. But you miss out on having the bonding time after birth with a preemie. You can go weeks without being able to touch your child. You are not their primary caregiver. You pass that job to the nurses until the baby is more stable.

I spent almost 8 hours a day at the hospital until B&E came home, but I didn't really start to feel like a mom until they were home and I was taking care of them myself.

If you did look at a surrogate and had a full term baby, you could bring baby home and begin the bonding process immediately. You could give the first bath, diaper change, feeding, etc... Instead of a nurse. It's just another way of bonding.

I'm not trying to push you one way or another, but simply to give you another viewpoint. I am sure you will be an incredible mom however you decide to bring children into your family.
post #12 of 23
I had a 27 weeker for my first baby. And I knew that when I got pregnant the second time, there was a possibility I would have another early baby, even though I didn't really know why my first was a preemie. After it became evident I had an incompetent cervix and the OB had me on bed rest and warned me that if I wanted more children, I would need to get the cerclage, I decided that if M was early too, I would be done. It didn't work out that way since DH's vasectomy didn't exactly take and now I'm having baby #3. Which I am extremely happy about since I wanted 6 kids. But this is defintely the last baby. Every baby is worth whatever you have to go through to get them here... But since I wanted so desperately to have a normal, natural pregnancy and birth... And after ALL the time I've spent in the NICU with tiny babies... I can't do it again. I can't do the surgery, the bed rest, the worrying about whether my children will live or be normal... It's just not fair. I am not saying don't do it... But be aware and informed. And maybe just do it once. And think strongly about surrogacy for subsequent babies, once you've had the experience. Good luck to you.
post #13 of 23
Quote:
Originally Posted by skybluepink02 View Post
Like most others, I think it depends on how premature the risk is. If there is a good chance you will get close to 32weeks, it might be worth the risk.

If it is a greater chance that you will deliver at the edge of viability, I, personally, wouldn't do it. The risks of long term physical or mental disability are very high and I couldn't, in good conscience, take that risk.

My babies first minutes on this earth were being pulled suddenly out of me, tubes shoved in their throats, needles in their veins. I couldn't even see them until they were 2 days old. Their first month of life was spent in a hospital with other people taking care of them. It was not peaceful or a good bonding time.

As far as having that bonding time during pregnancy, I know the idea of missing out on that is hard. But you miss out on having the bonding time after birth with a preemie. You can go weeks without being able to touch your child. You are not their primary caregiver. You pass that job to the nurses until the baby is more stable.

I spent almost 8 hours a day at the hospital until B&E came home, but I didn't really start to feel like a mom until they were home and I was taking care of them myself.

If you did look at a surrogate and had a full term baby, you could bring baby home and begin the bonding process immediately. You could give the first bath, diaper change, feeding, etc... Instead of a nurse. It's just another way of bonding.

I'm not trying to push you one way or another, but simply to give you another viewpoint. I am sure you will be an incredible mom however you decide to bring children into your family.
post #14 of 23
Thread Starter 
Just wanted to update and let you ladies know that I am off to see the neonatologist on Monday.
All your inputs have given me much to think about, and I am writing a list of questions to ask when I see her.
If anyone wants to jump in with any questions I should ask, I'm all ears!
post #15 of 23
Just wanted to throw in a bit...

No one should blame you for wanting to have your own baby and own experience. If they do, your situation probably pushed a button for them...or they are just incredibly judgemental.

My husband and I had 8 miscarriages. With our first baby that made it past 12 weeks I went into preterm labor at 27 weeks, 11 weeks on bedrest, 14 visits to the hospital...she got stuck at the end and has mild cerebral palsy.

With my second baby that went past 12 weeks I had a perfectly normal and uneventful pregnancy...he still ended up with health issues the first 7 years of his life, and will forever have to deal with the reprecussions. Despite that, he's a really cool kid and very typically developing.

I had pelvic inflammatory disease that put me in the hospital for 8 days, and was told that the chances of ever conceiving again were very low. My husband's long term medical conditions got worse, and we decided to make the "no more babies" decision permanent, and I was pregnant at the time of the consult!

So we have a third child, who we never expected to have, and I had preterm labor from 23 weeks on. He was a 35 weeker with respiratory distress, feeding issues, and now hearing loss, GERD, dysphagia...but physically and cognitively "normal".

My husband has a genetic issue that only got passed onto the oldest.

We probably should never have had any children, but with many Blessings they have survived, thrived, and continue to amaze me every day.

Believe in miracles, hope for the best possible scenario, and know that you can do whatever you need to do.

I hope the visit with the neonatologist goes well.
post #16 of 23

To be fair I have a 3 year old full term daughter.  I do not think I would have had a second child if I knew it would be this way.  She was born at 28 weeks due to severe anemia caused by me being sensitized to the anti Kell antigen that both she and her sister and dad carry.  She is still currently in the hospital she is 36 weeks gestation now.  She has good lungs, heart, no brain bleed, no long term effects that we can see right now. (Could be developmental or learning disabilities later.)  I love her I have bonded with her I do not have PPD.  But honestly I think about the pain I have put her through because I selfishly wanted to provide my first child with a sibling. My little Preemie has been through so much and if someone was to do all the things that they have done to her to an animal they would be arrested.  It is just sickening to see what these preemies go through.  The moms on this forum and other forums often gloss over how bad it is. I do not want to be cruel. But when my daughter was born she could only lay there spread eagle, her skin was so thin that it was sticky, if I touched her is caused her pain, she looked like a skinny purple frog. I went through fertility treatments to have each of my girls.  I chose to do this I know what it feels like to long for your own flesh and blood.  But sometimes even before you become a mom you have to think like a mom.  This is not about you it is about the baby that is yet to be.  Asking would you do it again is not a fair question.  I would do anything for my baby I do not want her to disappear, but would I choose for her to go through they pain and aggony of being a preemie no I would not.

post #17 of 23

I didn't have a preemie so you can fully discount my opinion here, but we plan to adopt at least 2 kids even though we can have our own bio kids. I have never seen adopting as "not your baby". A lot of people in my family are adopted, and all accepted as any blood relative. I think adoption is beautiful. I don't think I would adopt a newborn though, probably a toddler or a little older, but who knows.

 

Good luck on your journey!

post #18 of 23

If I had known in advance what the first month of my daughter's life would be like, I'm not at all sure I'd have had the courage to do it.

 

If I had known in advance what my daughter would be like, there would have been no way to stop me.

 

Good luck with the neonatalogist on Monday - I hope they have good news and a set of strategies for you.  If they think they can get you to 28 or 30 weeks, I would go for it.

post #19 of 23

Beautifully put!  Having a preemie is rough.  I had a 35 weeker who was quite healthy and it was still difficult (but very worth it!).

I would talk to the doctors, including a high risk pregnancy specialist.  If your odds are good for going close to term, go for it.  Anyone can have problems and end up with a preemie.  

I would also say that you should find out about other potential issues during the pregnancy - ie bedrest.   

post #20 of 23

if you feel guilty now, and you're likely to have a preemie under 29 weeks, then i would avoid it because you will probably hate yourself watching him/ her/ them go through all the intervention and daily grind of nicu. if you're likely to get over 29 weeks the pain and suffering will most likely be worth it for you in the end.....

 

it's such an odds thing isn't it. who can say what will happen to any pregnancy at the end of the day. if women with your body make up can go to term, then you're not gambling more than any other woman who expects to go to full term.

 

forget what other people say though - it's more about what you can live with iyswim.

 

so if definitely facing a very premature infant, i wouldn't choose it, but biologically i might still go for it love.gif

 

so that's really clarified things hasn't it dizzy.gif orngbiggrin.gif

 

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