as a sidenote, i should point out that thadd and i have heard many of these things as well. we know we are loved and never felt hard feelings about any of these things being said to us. i know people are always trying to show compassion... hopefully this list will point people in the right direction on how to effectively do that.
1. "you're so lucky to be able to sleep through the night"- of course, it is nice to sleep... but thadd and i talked about it, and we decided not having a baby in the neonatal intensive care unit for 3 months would probably be more restful overall.
2."at least you have time to heal from your c-section"- again, all of us emergency section mommies would much rather hobble around at home to the sound of our babies crying, than convalesce in the peace and emptiness of a baby-less house in baby related pain.
3. "you'll look back at this and ______" - we don't really know what we'll think. as mommies and daddies we're so scared that something terrible could happen that in the back of our minds we're thinking "i may look back on this as one of the great tragedies of our lives".
4. "isn't it neat to watch her grow outside (rather than in the belly)?"- no. well, sort of. but i'd do it the proper way over the nicu way any day! (also, they grow much better inside.)along with this one is "you're so lucky to get to spend this extra time with her", and "he just wanted to meet you early". all said to be encouraging, but so not true.
5. "she's so tiny"- just say she's adorable, cute, amazingly charming. anything else could be construed as negative by self-conscious parents. let's face it, preemies look weird!
6. "oh, so he's not_____"- no, he's not______, and probably won't for a few more months. preemies go by an adjusted age based on their due date. developmentally they hit milestones based on the adjusted rather than the chronological age. please don't mention the fact that our little ones are "behind". even though they really aren't, it still hurts. with this comes "but, he's not a preemie anymore". even when they get on the growth chart, they're still dealing with being a preemie. it's something that doesn't go away with size.
7. "it just seems like a long time"- yes, it does. logically all parents know that 3 months (or less) isn't that long... the nicu time will end.... but preemies can face difficulties their whole lives depending on incidents they have in those first few months. that's what preemie parents are afraid of... all that time dealing with the side-effects of preemie-ness.
8. "he's going to be fine"- this was a big one... lots of mommies listed this as one of the hardest things to hear. whether it's because we can't bear to let ourselves trust it, or because it seems so presumptuous. i, personally, find this ok to hear from some people...thadd doesn't. the mommies i've talked to listed it hands down as the most common encouraging phrase they heard that didn't encourage. pretty much, if you're not a doctor, you shouldn't assure them their baby is going to be fine... because there is always the off chance that something could go wrong. it almost invalidates the fears that we have as parents to say that they're unnecessary because "everything's going to be fine". does that make sense? a close relative to that one is "____ had a preemie and they turned out perfectly healthy". my husband hears this one all the time at work. our baby is not so-and-so's baby, our experience is not theirs.
8. "you could ______ to avoid having a preemie next time"- that may be true. but we're really guilt ridden already, and possibly not thinking about next time (yet). please keep that advice to yourself.
9. "so, are you thinking about trying again?" or "are you going to try to have another?"... this is usually said with a look of uncomfortable interest. this is a really hard subject for most preemie parents. one that they are honestly probably not consciously thinking about if they're currently going through a nicu experience, or dealing with a little preemie. as this question bounces back and forth in our minds, it's one that we weigh with great care and terrible distress. (most of us anyway.) we'll decide about this, and let you know when we think we can deal with it.
10. "he doesn't look that small"- preemies are going to be small, they just are. (remember that "they grow better inside" comment above?) they have feeding, and weight gaining issues for the first several years of life at least. saying they aren't doesn't make them bigger, it makes the parents feel like you think they're crazy. (they might be, but it's rude to rub it in. :)
11. "your c-section was easier than _____"- please don't make light of our experiences in childbearing. i know that i didn't want to have a section- in a perfect world i would have delivered a term baby in a tub with a midwife and some olive oil. :) but that plan, and my hopes and expectations of bringing a child into the world were cut away in the vertical incision on my uterus. (now i can never have kiddos the good old fashioned way- if i choose to try again, that is.) most of the mommies i've met, online or in person, were definitely not planning on having a c-section. now that i've had one, i can say hands down i would never choose one over vaginal birth. the pain was excruciating. i remember, and i think i blogged about, the first day i could shower without sobbing. SOBBING. that is some pain folks. anyway, in some ways it is easier, but debating the merits of c-section vs. vaginal birth are best left for mommies who had a choice in the matter.
12. "things could always be worse"- this is one that i don't need reminding of. maybe that's why it's on the list. i definitely know how much worse it could be for our little bird...and know that we are so blessed that things have gone as well as they have. but unless you're a doctor a comparison of 'how well baby is doing' to 'how well baby could be doing' is probably not going to be well received. there's also the chance that perhaps the effects of what the baby has been through are not known to you, or even the parents. for instance, do you know the effects of a grade 4 IVH? (that is what wren's attending would call a "wicked brain bleed".) be sure you know what exactly is going on if you're going to risk the "it could be worse" talk.
13. "he'll eat if he gets hungry enough"- preemies often have severe reflux issues and food aversions (not to mention failure to thrive issues, and other general feeding problems.). several of the mommies commented on unsolicited feeding advice. again, so few people understand about preemie issues enough to even give advice on the issue. related to this was "she's big enough to____" and "he's probably just not hungry", or "try feeding him_____".
so, in order to be productive below is a list of things that you should say to preemie parents that will comfort them:
well i suppose i'm being a little overdramatic. but, the best thing to do is lend a hand and offer an ear. we go through so much that there's really no right thing to say, or soothing words to be had. when we're in the midst of the stress and hurt it's often too hard to explain what we're going through... or step out of the situation and think about it logically. don't try to relate, don't try to "one up" the situation, and you don't need to come up with anything profound to comfort us.... just listen. ask us how we're doing and just listen.
thank you to everyone who reads this. i hope that it will help in knowing what to say should you be faced with parents in this situation. if you're a preemie parent feel free to add to either list. we'd love to know what was said to you during your nicu time or the following years.
11. "your c-section was easier than _____"- please don't make light of our experiences in childbearing. i know that i didn't want to have a section- in a perfect world i would have delivered a term baby in a tub with a midwife and some olive oil. :) but that plan, and my hopes and expectations of bringing a child into the world were cut away in the vertical incision on my uterus. (now i can never have kiddos the good old fashioned way- if i choose to try again, that is.) most of the mommies i've met, online or in person, were definitely not planning on having a c-section. now that i've had one, i can say hands down i would never choose one over vaginal birth. the pain was excruciating. i remember, and i think i blogged about, the first day i could shower without sobbing. SOBBING. that is some pain folks. anyway, in some ways it is easier, but debating the merits of c-section vs. vaginal birth are best left for mommies who had a choice in the matter.
12. "things could always be worse"- this is one that i don't need reminding of. maybe that's why it's on the list. i definitely know how much worse it could be for our little bird...and know that we are so blessed that things have gone as well as they have. but unless you're a doctor a comparison of 'how well baby is doing' to 'how well baby could be doing' is probably not going to be well received. there's also the chance that perhaps the effects of what the baby has been through are not known to you, or even the parents. for instance, do you know the effects of a grade 4 IVH? (that is what wren's attending would call a "wicked brain bleed".) be sure you know what exactly is going on if you're going to risk the "it could be worse" talk.
13. "he'll eat if he gets hungry enough"- preemies often have severe reflux issues and food aversions (not to mention failure to thrive issues, and other general feeding problems.). several of the mommies commented on unsolicited feeding advice. again, so few people understand about preemie issues enough to even give advice on the issue. related to this was "she's big enough to____" and "he's probably just not hungry", or "try feeding him_____".
so, in order to be productive below is a list of things that you should say to preemie parents that will comfort them:
well i suppose i'm being a little overdramatic. but, the best thing to do is lend a hand and offer an ear. we go through so much that there's really no right thing to say, or soothing words to be had. when we're in the midst of the stress and hurt it's often too hard to explain what we're going through... or step out of the situation and think about it logically. don't try to relate, don't try to "one up" the situation, and you don't need to come up with anything profound to comfort us.... just listen. ask us how we're doing and just listen.
thank you to everyone who reads this. i hope that it will help in knowing what to say should you be faced with parents in this situation. if you're a preemie parent feel free to add to either list. we'd love to know what was said to you during your nicu time or the following years.
