Could we get some clarification here regarding what this forum is for? - Page 3

[sehbub]

Carrie, you're a preemie mama, no matter how old your preemie is now! You've been through the gamut just like the rest of us. Feel free to de-lurk now.

And yes, the Neo and NICU nurses were present in the delivery room to whisk DD out to the "intermediate" station and stabilize her before sealing her in her isolette, showing her to me in the doorway, and rushing her to the NICU. DH followed, and said that they did, in fact, RUN through the halls in order to get her in and safe.

Rooming in is not an option at the hospital in which DD was born, as once the mother is discharged (48hrs max) she is no longer a patient, i.e. no longer entitled to a private room, not to mention that they don't have time to train parents how to care for their preemies who are unable to eat or breath and can't afford to hire enough nurses for a 1:1 so that all preemies may room in with their parents in private rooms. I envy you, MITB, if you were in such a place that enabled you to have a private room, private nurse, and to stay with your child full time. Leaving at the end of the day is like ripping open a wound every day.

[PMolly]

Can I join in? I lurk here sometimes, too. DS was born at 35 weeks and was in NICU for 23 days. However, sometimes I just don't feel like I belong because he didn't have a lot of the traditional problems. He was on room air after 24 hrs, no lung/heart complications, etc. He just wouldn't eat! I still have guilt about that. Like, maybe if we had tried....(fill in the blank) he would've been able to come home earlier.

The PTSD thread had me in tears. I think I still need to deal with some of my feelings from when he was in the hospital. I get upset when I read/hear birth stories where the babe is delivered and put to mamas breast right away. I didn't even get to hold DS for 3.5 hrs. after he was born. : . But, I know that there are some mamas here that would've loved to hold there babes that soon, so sometimes I feel like I shouldn't be here. (but I'll be lurking....)

[sehbub]

Welcome, Molly. Considering that your 35wk son was in the NICU at all, you belong here just like the rest of us NICU parents.

And Doodlebug is my DD2's nickname, although most of the time she ends up just being Doodle.

[ksera05]

Originally Posted by PMolly

Can I join in? I lurk here sometimes, too. DS was born at 35 weeks and was in NICU for 23 days. However, sometimes I just don't feel like I belong because he didn't have a lot of the traditional problems. He was on room air after 24 hrs, no lung/heart complications, etc. He just wouldn't eat! I still have guilt about that. Like, maybe if we had tried....(fill in the blank) he would've been able to come home earlier.

The PTSD thread had me in tears. I think I still need to deal with some of my feelings from when he was in the hospital. I get upset when I read/hear birth stories where the babe is delivered and put to mamas breast right away. I didn't even get to hold DS for 3.5 hrs. after he was born. : . But, I know that there are some mamas here that would've loved to hold there babes that soon, so sometimes I feel like I shouldn't be here. (but I'll be lurking....)

23 days is a long time. welcome!!

[BundleFishMama]

Originally Posted by Amys1st

off topic

bundlefish- my parents are from philly but moved out to Chicago 35 years ago (while my mom was carrying me) so its neat to hear you speak of the different hospitals. They lived in Upper Darby. They just spent the last month of Aug/Sept at Sea Isle City at the shore while their house is being built here. We would have joined them but Maggie cannot fly for a few more years (nicu related).

My OT response to your OT post :

Wow, Upper Darby is not far from us, about 25 minutes. It's a nice area - we're from D.C. originally and moved here to PA two years ago, so it's just starting to feel like home. I like Philly a lot, it's a cool city, even thought I'm still homesick for Washington. We're in the process of selling our house and moving a little farther out from the city just to get a better deal (getting a bigger house, a single family - right now we're in a townhouse with no property!) Anyway we'll have to meet IRL sometime even if you won't be out this way - you're in Chicago right? We'll be there in July for the LLL 50th! And to visit my younger brother, he lives in downtown Chicago.

OK here's the semi-on-topic part: I'm just curious, why can a preemie not fly for years? I would have figured they shouldn't fly for a while because of the germs recirculating and the changes in air pressure and things that might be hard on their lungs, etc., but I wouldn't have guessed it would be for more than the first year or so. Enlighten me!

[BundleFishMama]

Originally Posted by sehbub

bfm - one of my best friends works at Pennsy as a nuclear medicine tech, and her brother is a neuroscientist, and her SIL is also a doc there. She lives in Center City. I love visiting her! And I'm so sorry so many people gave you a hard time about Andrew. Just listening to you talk in our DDC, it's so obvious how much you love and care about your kids, and how hard you work to make sure you provide the best for them at all times. You're such an awesome mama!

Aw, thank you Sarah!!! That is the sweetest thing anyone has said to me in a while and it couldn't come at a more needed time, actually! I was just feeling like a pretty rotten mother - I've been really stressed lately for a variety of reasons and I'm afraid I've been taking it out on the kids And also, I have to say, I love talking to you all and it really helps to hear about other NICU experiences...but somehow, I don't know if this makes sense....it kind of makes it all real again, and then I have to deal with the guilt I still feel. For various reasons/choices I believe the whole GBS thing was kind of my fault. But since ds's only lasting issues are fairly basic GI stuff, I go through periods of time, even weeks, where I don't really think about and it's as if it never even happened. But then I'll have a period of a few days where it's ALL I think about. Is that normal? I kinda get obsessed with thinking about it and talking about it all of a sudden, and no one understands - my DH is like, "He's totally fine now, what's the problem, why are you 'torturing yourself' again?" He wasn't there for a lot of it so I don't think he gets it - he (and most other people I know IRL) are just like, OK, he's totally healthy now, doing great, so why am I "dwelling" on 10 days that happened in the past?

Anyway Sarah it looks like we'll get to meet finally for our northern MD/southern PA June ddc get together!

ETA: Ksera05 I noticed you're from NoVa, where we were from (we lived in Fairfax, actually the Oakton area, after we moved out of NW D.C. when our 2nd was born) so I just checked out your most recent pics and I had to say, Sydney is absolutely gorgeous!!!

[Amys1st]

Originally Posted by BundleFishMama

My OT response to your OT post :

Anyway we'll have to meet IRL sometime even if you won't be out this way - you're in Chicago right? We'll be there in July for the LLL 50th! And to visit my younger brother, he lives in downtown Chicago.


OK here's the semi-on-topic part: I'm just curious, why can a preemie not fly for years?

OK more OT,

Will be at the LLL in downtown as well. I am thinking of having a backyard bbq for mdc LLL attendees! More to follow...

Maggie cannot fly for another 18 mos becuase of her BPD status. She may have issues with the O2 in the cabin and pressure plus the germs floating around.

Or as DH said- we cant fly becuase the Dr said we cannot fly, end of discussion.

[OGirlieMama]

Amys1st, can I ask did the doctors volunteer that information about flying or did you ask and they told you no way? I'm asking because they've never said anything to me about either of my girls not being able to fly, and I want to make sure it wasn't an oversight, if you know what I mean. Lilly only barely meets the technical definition of BPD, but Kate was on O2 for nearly 4 months, including 2 at home. We're seeing her pulmo next week and I will definitely ask about flying regardless.

[Nathan1097]

Going to finish the rest of this thread after I take the kids to school, but want to say to BundleFish:

Ignore those people! I had someone like that while I was on bedrest the first time. Sent me emails all on the evils of bedrest and why didn't I just get up and do whatever I wanted?

I was Group B Strep + during my last pregnancy. I found out at 5 mos along when I had a UTI that they couldn't pick up with just a dipstick so I insisted they send it to the lab. You can be sure during premature labor AND eventually when I delivered, I was given ampicillin in my IV. And, we stayed an extra 12 hours or 24 hours after birth or something so they could keep checking on him in our little private room there, instead of leaving and checking him into the nursery.

[Amys1st]

I was told by my ped/former neo do not fly.

[sunnysideup]

Originally Posted by BundleFishMama

I have to deal with the guilt I still feel. For various reasons/choices I believe the whole GBS thing was kind of my fault.

My first dd was born septic from GSB. The infection had spread to her heart, so it was barely functioning. Her first night was touch and go. She spent a week in the NICU, and recovered well--no lasting effects of the disease. The whole experience was very hard on all of us. I had feelings of guilt just like you describe--I really did blame myself. I think that is totally normal. It's a nutural response when you go through something this horrible and beyond all control to try to blame yourself. We do it because it's easier than believing there was no way we could have protected our baby. It's a hard fact to face that sometimes bad stuff happens and there's nothing you can do about it--it's easier to think if I would have just done this or that differently I could have protected my baby.

I don't normally post in this forum. My NICU experience was almost 14 years ago--I can't believe it's been that long. It was the most difficult experience I've ever been through. It changes you.

[RubyV]

I lurk because I know someone who posts here and I like to check to see how they are doing (Hey Bear and cubs!).

I also lurk cause I was a preemie backi n the days when my mom had to fight to touch me, scream and kick to stay in the hospital with me, and is eternally grateful to the old nurses who snuck her in after midnight while she herself was still admitted to see me. Her milk was immediately dried up, and is still traumatized by the experience of being 19 with a very sick baby. I"m in awe of the changes over the last 30 years.

[BundleFishMama]

Originally Posted by sunnysideup

It's a nutural response when you go through something this horrible and beyond all control to try to blame yourself. We do it because it's easier than believing there was no way we could have protected our baby. It's a hard fact to face that sometimes bad stuff happens and there's nothing you can do about it--it's easier to think if I would have just done this or that differently I could have protected my baby.

I know that's true but in my case I really do think there ARE things I could have done differently to prevent it and in fact I almost did. My DH was scheduled to go overseas for a major business obligation he couldn't get out of, a couple days after my due date. Everyone, and I mean, EVERYONE kept assuming I was going to request to be induced before he left. I kept insisting, no, it's bad for the baby, blah blah blah, no inductions, I want to let him come when he's ready even if it means DH misses the birth, I'm not chancing baby's health by forcing him out before he's ready, I want to have a natural birth with midwives and no interventions so it's healthier for baby, less chance of complications, etc. When I went late people were like, your husband is leaving in 2 days, are you REALLY not going to get induced?? Even some of my normally crunchy friends couldn't believe I was being so 'stubborn'. And I still insisted no, I'm waiting for baby to come out when he's ready because that is better for him.

Even though my DH was SO sad about missing the birth he told me it was my choice, he said I'm the one with the mothering instincts, so ask for induction or wait to go naturally, whatever felt right to me and he would be OK with it. So I refused to be induced even at nearly a week late when he left for his trip (of course he changed his flight twice to buy more time and still, I went into labor about 12 hours after he finally left!) I did try castor oil the day before he left and all it did was make me horribly sick for a few hours (and later I found out that there are studies linking use of castor oil to the baby passing meconium in utero which Andrew had tons of, his fluid was all dark green and brown and he had to be deep-suctioned right after birth, so of course I think that is my fault too for drinking half a bottle of castor oil! )

Anyway when I finally did go into labor on my owm, I waited forever to go to the hospital, again thinking that's better for the baby - everyone always says labor as much as you can at home or walk, etc. so you're not stuck in bed on your back with interventions pushed on you, right? So I was in early labor all day and it was Sunday, I went to church with my parents, took the kids to the playground and out to lunch, went shopping to keep walking and keep labor going (OK anyone who knows me IRL is like, yeah, that's you, "hey I'm only in labor, you don't think I'd miss this sale at the mall, do you?" I thought it was funny but now I don't, now I think maybe I was negligent. The contractions had been coming all day and were regular but not painful yet so I thought I was doing the right thing waiting. Finally when they got more intense and my water broke we went to the hospital. The midwife told me I should have come sooner, that DS was not tolerating labor well, his heart rate was erratic, etc. I didn't even think about that - my first two pregnancies and labors were textbook normal. His heart rate went super low (like 60 I think) and they put me on oxygen, then his heart rate shot way, way high (over 200) when I was pushing and were talking about c-section if he didn't come quickly then which fortunately he did after that. But they hadn't started the abx for gbs in time, I had the dose but it didn't have long enough to work before he was born.

So the bottom line is, all my choices regarding the birth were made trying to do the best thing for my baby, and they all ended up hurting him more. If I had just listened to everyone and gotten induced a day or two after my due date, I am 99% sure all this would not have happened! There would have been minimal risk to Andrew and I would have been in the hospital from the moment labor started so there would have been plenty of time for multiple doses of abx - they would have started them right when they started pitocin, and chances are very good that all this would not have happened. (And I would not have had to give birth alone!) Heck, even if I hadn't gotten induced but had chosen to go to the hospital earlier in the day once I was in labor, they'd have started the abx sooner and again, chances are he would have been fine. Maybe he wouldn't have gotten in a position where he was compressing his cord (which is why they think his heart rate was so erratic).

So I know it sounds like I'm just blaming myself out of guilt but I honestly do believe that in my case, choices I made contributed directly to DS being sick and in NICU. The other thing with gbs is that because it comes from your body, you almost can't help but feel guilty. My MIL even implied that it's my fault for having it, like it's a friggin STD or something! (Not that someone who has an STD would be to blame either, but YKWIM.) She also implied it was my mw's fault - she is very mainstream medical in all things and kept saying I shouldn't have switched from an OB to a MW. : I know in my head that 30% of women just happen to be colonized with this bacteria but still, in my heart I feel like, something I have in my body caused him to get sick.

OK sorry for this long rambling post, you all are going to think twice about having invited me to post here

[ksera05]

Originally Posted by BundleFishMama

ETA: Ksera05 I noticed you're from NoVa, where we were from (we lived in Fairfax, actually the Oakton area, after we moved out of NW D.C. when our 2nd was born) so I just checked out your most recent pics and I had to say, Sydney is absolutely gorgeous!!!

That's so funny! We're about 15 minutes north of Oakton. Small world!! LOL

And thank you...I agree that she's gorgeous but I'm biased

[ksera05]

to Bundlefishmama

I think your birth story sounds like you did everything "right" as you would be told by about anyone here over in the birth forums...and then you were just one of those horrid statistics where doing things "right" went completely and totally wrong. I think one of the things a lot of us NICU moms have to work through is that our bodies failed us. I know I personally blame myself for the fact that I didn't go to the hospital sooner. I had Sydney because of pre-eclampsia and looking back if I'd gone to the hospital when I first started feeling sick, she might have made it a little while longer inside me. Instead, by the time I walked in it was an emergency "get this baby out STAT" situation. They didn't even make it through a 24 hour urine collection

I am so sorry that you had to go through that. Trust me, there is no blame from anyone here. Just sympathy and commiseration

[BundleFishMama]

Originally Posted by ksera05

That's so funny! We're about 15 minutes north of Oakton. Small world!! LOL

And thank you...I agree that she's gorgeous but I'm biased

Yeah I like the Philly area but I still miss D.C. a lot. I went to Georgetown and worked in the District for years after that and I love love loved it, lots of friends and family there still so at least we visit a lot! We couldn't afford it there anymore though, house prices were getting so insane so when DH got this offer up here, to make more money AND in an area where 250k can actually get you a starter home instead of a condo We're going down tomorrow in fact, to Leesburg for a baptism on Sat., DH's niece just had her first babe and we're going to be the godparents

Thanks for your kind words in your other post. And yes, Sydney is just adorable and she looks like you - love the hair!

[sunnysideup]

Originally Posted by BundleFishMama

So I know it sounds like I'm just blaming myself out of guilt but I honestly do believe that in my case, choices I made contributed directly to DS being sick and in NICU.

There are moms who choose to be induced, and then run into complications from that. You just can't know in advance what problems life will throw your way. You made the choices you thought best at the time. Even if you had made all the "right" choices your baby might have still gotten sick. I was induced with my dd and it didn't keep her from getting infected with GBS.

[Amys1st]

I could not have spent all waking moments in the nicu with MAggie even if I could stay there. I have an older dd, my dh has to have a job, there are many things I have to do in my life to keep it moving.

So I was discharged less than 48 hours after my c section. I was at another hospital, I wanted to see my dd. I would have gone nuts in the hospital while dh was going between both hospitals plus taking care of our older dd. We did have a lot of help but it happened so fast, we had to pick up some of our life or sink. Also I had to be there for dd1 as well.

I had some guilt for a while that we were out of town when I started to have complications. I dont know if it would have changed anything if we were here....never will know so I cannot dwell but love my 2 dds.

But I can see how many mamas will go over it in their head what they could have done different and blame themselves.

[ksera05]

Originally Posted by twins10705

I have heard of some NICUs that have parent rooms nearby(I wish our hospital had something like this). We were in the NICU for 52 days...and I was discharged on day 4...it just doesn't seem plausible if your baby has to be in NICU more than 4 days.

I wish ours did too. When Sydney got really sick the last time around, we ended up going outside and sleeping in our car for awhile : There was just no where else for us to go - we lived far enough away we didn't feel comfortable leaving, but near enough that we didn't qualify for the Ronald McDonald house. Our nurse later found a couch that we could have hidden away on in a corner of the NICU but by that time we were comfortable with going home.

[sehbub]

Originally Posted by RubyV

I lurk because I know someone who posts here and I like to check to see how they are doing (Hey Bear and cubs!).

I also lurk cause I was a preemie backi n the days when my mom had to fight to touch me, scream and kick to stay in the hospital with me, and is eternally grateful to the old nurses who snuck her in after midnight while she herself was still admitted to see me. Her milk was immediately dried up, and is still traumatized by the experience of being 19 with a very sick baby. I"m in awe of the changes over the last 30 years.

*gasp* RUBY!! I have my first internet stalker...I feel so loved. It's nice to know you're keeping an eye on me (us). :

BFM: I am SO excited for our get together! I have to check the chat thread and see if we're any closer to figuring out when/where. And while I totally understand the guilt of an unpleasant birth and the ramifications for your baby, I do hope that you are able soon to realize that you did everything right for your darling babe. As I said before, you're an awesome mama!

ksera: I'm only about an hour from you in Southwestern MD. We're half an hour from picking up 270 in Frederick, which is how we always get in to DC.

OT: Keep fingers crossed for me this afternoon please, ladies. I'm 19wks today, and heading in for an u/s this afternoon to measure my cervix. Apparently my OB wants measurements every 2-4 weeks to rule out shortening and funneling.

And of course, as it is Thursday, I get my loverly shot in the tush. Blech. Conveniently, tonight is Mom's Night Out for my local playgroup, so I may be in pain, but I'll be eating Mexican food, and that's all that matter!