what not to say to preemie parents-

i'm a member of several message boards online... thebump.com, babycenter.com, etc. (i would recommend hooking up with these ladies if you're a new preemie mommy- they have been SUPER helpful!) anyway, on these message boards mommies often vent about things that are said to them. oftentimes things meant with love, but words that still sting. so i decided to compile a list of phrases, condolences and encouragements for all of you term-baby-experience-havers to never say to a preemie-baby-experience-haver. below is a list of all the things that the message board mommies have listed...
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.


Betsy in ar said...

FYI, I love you, I'm here if you ever need

Trish said...

Great post!

Samantha Strusz said...

I'm copying and pasting this from my babycenter.com account. I would just like to send this to you because you seem very experienced in the matter of preemies, NICU stays, and maybe about how to handle the way doctors are talking to us.

"My little one, William, was born a week ago today, gestational age of 23 weeks and 6 days. There were a very scary couple of days when he first went into the NICU. His blood pressure was dangerously low, even with the help of dopamine. He wasn't absorbing oxygen and was needing 100% from the oscillating ventilator. And the most scary thing was that he was diagnosed as having a grade 4 bleed in his brain. (On one side, on the other it is a grade 3.)

One of his doctors has been very realistic with us. He is very concerned and is doing everything he can to help keep him alive. There is another doctor working with him, however, who is acting like the grim reaper.

William stabilizes more every day. He still needs dopamine, but with it his blood pressure is fine. He's absorbing plenty of oxygen, and only needs 30% from the ventilator. In spite of this, the female doctor working with him is constantly pressuring the father and I to take him off of life support and let nature take its course. As far as I can tell, this isn't because she doesn't think he won't survive. She thinks that if he does, his quality of life will not be good because the brain bleeds have the potential to seriously handicap him. All the research I've done on the subject has told me that he can be blind, lose his hearing, or in the worst case, have Cerebral Palsy.

I don't know what to do at this point. I've made it very clear to this doctor that I do not want to give up on my son, handicap in the future or not. But occasionally at my lowest, I start wondering if maybe she is right. Will his handicap really be so bad that his life won't be worth living?

I am an 18 year old college student, predicting the introduction of a happy healthy baby at the beginning of May. Instead, my little miracle came 4 months early, and I'm hanging onto every ounce of hope I can muster. The prayers and support of the people around me have been all that has kept the baby's father and I going."

wrensmommy said...

dearest samantha... i am so sorry for you and the baby's father.. and for poor little william.. fighting so hard.

in these matters, i don't even know where to begin. so i think i will just have to pick a starting place.

since i am not a doctor, and possibly don't know all the intricacies of williams nicu stay... i will tell a story that one of the neos we respect most told us. it's the story of a little girl. a girl that was born with all manner of problems. if it could go wrong it did. including, what the doctor called "a wicked brain bleed". i believe this was a grade 4 IVH. (though it may have been a 3. usually she reserved "wicked" for the worst though.) regardless... this little girl had all sorts of illnesses. she was on the oscillator, had to take steroids to get off of that (which can cause developmental problems as well)... then on to the vent for a bit..etc. a PDA requiring surgery....bouts with NEC... and ROP requiring surgery.

when the doc told us this story, her eyes misted.. her voice wavered.

the story goes on.. the little girl came back to visit at age 6 or 7... wearing glasses...needing a math tutor... and just having a little tightness in her walk. a sign of CP that she said only a doctor would notice.

i tell you this story as a story of great hope!! but also one of caution. when she spoke of all the things that were wrong with the little girl she said "we all thought... what had we done? to what end have we saved this little girl?". she fully expected that little one to have a life of hardship and pain because they saved her life.

i, nor anyone, should ever tell you how to handle your sweet baby's life. that includes the doctors. i can't tell you what to do- i can't even tell you what i (or we) would do... all i can suggest is to exhaust every avenue, read every medical journal report, talk to the doctors with seemingly conflicting reports, talk to people who have been through similar situations... do as much research as you can to make a decision. and then, when you guys make that decision.. don't look back. don't second guess. we all can only do the best we can with the information and situations we've been given. your little one could grow up near perfect... but he also could have debilitating handicaps. it sounds like you all are ready to deal with whatever life brings. i would ask for a family meeting, with all the doctors/nurses that treat him... and you and his father make a statement. "this is our choice_________. and this is what we want_______. and we would not like to be told ________ again."

rely on supportive family and friends... and lean on the lord. remember, this life is not everything... this life is nothing compared with eternity. know that although your william may have an imperfect body here, in this life.. he will be perfect someday... no matter when that is. all of the hardship we face here is just temporary. that doesn't lessen the pain... but it does give our lives perspective.
i pray that you all will have the peace of God.. the peace that transcends all understanding.. during this time of unbelievable stress and heartache.

Samantha Strusz said...

It's been nearly eight months since I left you the post about what was going on with my son William. I apologize for never replying to it... It was a very stressful time in my life and it was very hard to keep track of everything I had started online in an effort to deal with the situation.

It makes me very sad to tell you that William didn't make it. January 30th, after he'd gone through several surgeries in order to repair his intestines and the brain bleed developed into massive Grade 4 on both sides, the father and I came to the conclusion that he was suffering way too much, and removed him from life support.

I wanted to tell you that I am now 31 weeks pregnant with a baby girl. It was not intentional, but I have to say that it was possibly the biggest blessing I could have asked for to become pregnant again after losing William. Now that I have made it to a relatively safe point in the pregnancy, I went back and read a lot of the things I posted online while William was fighting for his life. I came across your response again, and I just felt the need to thank you for your kind words of wisdom. I remember how it made me feel the first time I read it, and how it brought me a sense of calm that no one else had been able to give me at that time. You really are an amazing person. Thank you so much for helping guide me, just a stranger on the Internet, through a time of crisis.

I have faith now that William is in a better place. It was very hard losing him, especially under the circumstances that his life was quite literally in my hands, and I had to let him go. But everything happens for a reason, and around Thanksgiving, I'll have a beautiful little girl, and that truly is something to be thankful for.

Thank you again,


Danielle said...

I liked your post. It reminds me a lot of the things that I heard while Lily was in the NICU for 97 days (just over three months).

However, my daughter is not a preemie, and in spite of that, is facing many of the same issues that preemies and micro-preemies deal with. She's 5 months old, has such low muscle tone that she's got the head control of a 5 week old, and can't eat anything by mouth. She also had open heart surgery at 7 weeks old and has hearing problems.

One of the most helpful things anyone ever said was "I've been meaning to call, but it just seems like you're so busy with Lily." It showed interest in my and my trials, willingness to talk about it, and respect for my time.

I know this blog is intended for preemies, so I don't take it personal, but please remember that not all NICU babies were born premature and often those term babies have some big issues. We feel really alone because there are even fewer who can relate to us.

wrensmommy said...

i hear you danielle... i really do. as a preemie parent i was surprised everytime i saw a termie in the NICU. shocked really. after talking to some of my friends who were nurses i learned of some, just a tiny fraction, of the serious issues termies can face.
i'm sorry for any NICU time you and your famiy had to endure.
while this site is specifically intended for preemies i would love to host a guest blog post if you would like to write one... something along the lines of "NICUS: not just for preemies" or something like that.
if you're interested feel free to contact me at the email address listed on the blog.
thank you for sharing a bit about your story- and i really appreciated the comment by your friend as well... it really does show care and concern.