What we wish our family and friends knew about having a preemie/NICU/sick infant. - Page 2

[Amys1st]

I guess we have a great list, I found it on another site and actaully Dads also posted! So from what I gather, the people there were happy to have it and added their own as well. Someone suggested posting it on all entrances to nicus!

[waldenmommy]

I love this list!

Medical staff:
Don't tell me my baby isn't sick. No, compared to those 24 weekers down the hall, he isn't sick. But how many babies come to a Level 3 NICU for FUN?!

Don't ask me about my prenatal history or an infection BEFORE I know how my baby is doing.

Don't tell me I "shouldn't be here" and that my dr discharged me too early. You are here to treat my baby, not me. (And it was our family practice dr who got me discharged, not my OB!)

Clergy:
If I ask you to, please baptize my baby. I know my stuff. I know how and why we baptize. Don't tell me he isn't sick enough for baptism. He is. He is in the hospital. I can't hold him and I can't touch him without gloves. He NEEDS baptism and don't make me do it myself cause I WOULD! (Oh, and they did do it! )

Family:
Please, do not send me a card stating, "We understand you were upset because the baby was sent to another hospital without you. It's all for the best." Nope, I am upset because he is in the hospital unable to breathe, thanksbye!

Please understand I need to mourn. It is never right to leave the hospital without your child in your arms.

Friends:
Don't judge me when I make choices that I have never made or had to make before. I chose to give more/less/different medical care to a child who needs special medical care. Unless you are in my shoes, you never know what you would do.

Please tell me how wonderful and special my baby is- because he is!

If you don't know what to say or do, admit it. But a shoulder to cry on is always needed.

[teapot]

Never had a baby in NICU myself, but my grandchildren were born at 31w6d. DGS did well (relatively-speaking, thanks to prenatal steroids)--spent 22 days in the NICU and is the joy of all our lives.

Our granddaughter lived 97 minutes, in her parents' arms, surrounded by love the entire time.

The most thoughtless comment I received was something along the lines of "well, she (our daughter) still has one. He'll keep her so busy, she won't have time to think about the one she lost."

The main thing I would suggest to add to the main list is that any sentence that contains the words "at least" probably doesn't need to be said. Things like, At least you have other children, at least you can have another one, at least you were in a hospital with a NICU, at least they have such great care these days, on & on & on.....

My : from someone who hasn't been there.

[BellaRose0212]

Wow

I don't know anyone with a preemie but I read the list anyway, in case I know someone in the future. Some of the things on the list astound me, I cannot believe people would act that way. I should have realized though, from some of the insensitive things I heard during my normal healthy pregnancy and newborn stage. People are incredible!

Other things on the list surprised me. I don't know if I would say this, but I was surprised that a comment like "So and so was a preemie and now they are a healthy child," would be offensive. From an outsider's point of view, I admit that it seems like it would be reassuring.

I think everyone who has a preemie in their family should read this list. For those friends and family who haven't read the list though, consider cutting the ones with the milder comments a break. I had to do the same thing when grieving for my deceased brother and later for my best friend. People don't know what to say and they have no way of relating to you. Most of them are well-intentioned.

For some of the other things, like the mention of the friend who brought her sick kids and later was disrespectful at the funeral, there is no excuse!

[Amys1st]

Originally Posted by BellaRose0212

Other things on the list surprised me. I don't know if I would say this, but I was surprised that a comment like "So and so was a preemie and now they are a healthy child," would be offensive. From an outsider's point of view, I admit that it seems like it would be reassuring.

Thanks for reading!

I understand how it would seem reassuring, but in preemie time, you dont know sometimes day to day what is happening and that is all you can think of. When you hear something like this, it makes the parent feel that they are crazy for being out of their mind worried and in pain because, hey in the end, all will be good (and it might not). Sometimes put in that perspective it makes more sense.

[Lindsay1234]

Im a new mom of a NICU baby, full term but with a heart problem. This list is amazing.

My suggestion: Dont call and text me several times a day asking for updates and ask when you and your fam can come see the baby in the hospital. One, when Im ready to talk to you, I will and two, coming to see my sick baby in the NICU isnt a family fun event for everyone!

I actually am routing all my calls to my parents and inlaws, Im sick of all the calls!!!

[musiclady]

Originally Posted by Lindsay1234

Im a new mom of a NICU baby, full term but with a heart problem. This list is amazing.

My suggestion: Dont call and text me several times a day asking for updates and ask when you and your fam can come see the baby in the hospital. One, when Im ready to talk to you, I will and two, coming to see my sick baby in the NICU isnt a family fun event for everyone!

I actually am routing all my calls to my parents and inlaws, Im sick of all the calls!!!

Yep, I route all my calls through DH. And I try to send out email updates as I pump. It's one way to keep people off my back, and another way to entertain myself while I am pumping....

[19spitfire]

Thank you for the list of do's and don'ts. I needed this list today.

[teenybaby]

What you are basically saying is....

.....there is nothing anyone can say that will be correct

......there is nothing anyone can do that will be correct

......I do not want anyone near me or my baby

,.....I am emotionally unstable at this point in my life and absolutely everythinng will be perceived as intrusive and not meant with good will.

......I do not realize that other people are just genuinely concerned and care about me and my baby.

....everyone just needs to stay away until I am more emotionally stable....

What human person could meet all the criteria on your list???

period.

[maryeliz]

Originally Posted by teenybaby 

What you are basically saying is....

.....there is nothing anyone can say that will be correct

......there is nothing anyone can do that will be correct

......I do not want anyone near me or my baby

,.....I am emotionally unstable at this point in my life and absolutely everythinng will be perceived as intrusive and not meant with good will.

......I do not realize that other people are just genuinely concerned and care about me and my baby.

....everyone just needs to stay away until I am more emotionally stable....

What human person could meet all the criteria on your list???

period.

Yeah that pretty much covers it.  If I could say two things to my friends and family those things would be:

-I know you love us, but nothing you can do or say can make this situation better because it sucks.

-When in doubt, say less.
 

[MadelinesMama]

Originally Posted by teenybaby 

What you are basically saying is....

.....there is nothing anyone can say that will be correct

......there is nothing anyone can do that will be correct

......I do not want anyone near me or my baby

,.....I am emotionally unstable at this point in my life and absolutely everythinng will be perceived as intrusive and not meant with good will.

......I do not realize that other people are just genuinely concerned and care about me and my baby.

....everyone just needs to stay away until I am more emotionally stable....

What human person could meet all the criteria on your list???

period.

Sometimes there was absolutely no politeness left in me after spending the day with my very sick baby.  You may think by asking me when he's coming home you are being supportive and showing interest, but you sure as hell weren't the only person asking that.  It's pretty frustrating to be asked the same question repeatedly.  If I tell you that it's going to be several more months, don't ask me the same question in a week.  If something miraculous happened you can bet I would be telling EVERYONE I know about it.  Often we just wanted to be left alone.  We didn't feel like answering the phone.  We didn't feel like answering emails.  We just wanted to be with our baby and somehow have a normal home life for our daughter.