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

Forum Jump: 
Reply
 
Thread Tools
#1 of 31 Old 01-09-2007, 04:32 PM - Thread Starter
 
intorainbowz's Avatar
 
Join Date: Aug 2006
Location: Crying into my Diet Coke.
Posts: 3,037
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I’ve organized the responses and grouped them. The only editing I did was to check spelling and grammar. As many different people contributed to this list, sometimes the answers contradict themselves. Please go with what you feel best would help your loved one.

The following members contributed to this list: IntoRainbowz, Zan&Zav, lindberg99, OGirlieMama, sunflowers, splendid, lena1984, Cressida, felix23, Lousli, Amys1st, Aimee21972, tbavrbab, curlymama, nathansmom, alliteration, homewithtwinsmama, onyxravnos, Rachel J., DoubleLove

If you want something added, please either PM me or just add it on. :


Bed rest/High Risk Pregnancy

•Please don't judge me or my choices(this includes my birth choices and choices made in the NICU). This was not my dreamed for pregnancy, and nothing is going the way I want it to.
•There is no one way to "do bed rest" correct.
•Please don't tell me all the horror stories you know about pregnancies gone wrong. It just adds to my worries. My doctor probably has done a very good job educating me about risks and outcomes. Once people knew I was having problems, I heard all about their, their family, their friend’s cousin’s neighbor and their baby who died/was brain damaged/missing an arm etc
•Don't tell a pregnant woman who's baby is failing to grow how slim she looks. Pregnant women are not supposed to be thin. Don't tell someone when you learn they are having a baby the next day that "You don't even look pregnant." Most women probably want to be told they look thin, but not a woman who has fretted over every ounce she has not gained.
•Please lend my videos/books that you have in your libraries. That saved me having to get DH to get them for me. Even if you don't think I would usually read or watch that type of book/movie try me. I got REALLY bored on bed rest, and the John Wayne collection I was lent was very entertaining.
•Unless you are a doctor, please don't give me medical advice, unless I ask for it. (Even if you are a doctor, but not mine, think about this one.) I got really tired of having to explain over and over again to people that were not medical providers why we were doing what we were. If I ask, give me your opinion.
•Please don't tell me how hard the last few months of pregnancy are or complain how horrible it was to be overdue around me.
•Asking me if I am SURE I had my dates right...because she did so well, I MUST have miscalculated. I am sub-fertile (not fertile, not infertile, just takes lightening striking a lottery winner, k?) and I track my cycles like a hawk, there is no way in the world I got my dates wrong...AND the dates were confirmed by SEVERAL first trimester ultrasounds because I have a tendency to miscarry frequently. GOT IT?!
•When hearing about the birth, don't say - "Is she alive?" that's a little blunt and brutal don't you think?? If you are curious about her condition, try something a little more tactful...like "How is she?"
•Don’t tell me about how lucky I am to not have to go thru the last month or two of pregnancy.
•Don’t tell me how a cesarean-section is so much easier and I’m lucky I had to have one.
•Don’t tell me how it’s ‘no big deal’ and everything will be fine because people have preemies all the time and they are just fine.
•Don't compare my preemie baby's death to the death of an older person as no big deal since "you didn't know her anyway".
•Don't tell me how lucky I was to have my babies at the hospital so I could recover and catch up on sleep. There is nothing more in this world I wanted then to have my babies with me at all times. There is absolutely nothing 'lucky' about having babies in the hospital.
•Don’t judge me if I have to go back to work while my baby is in the hospital. I may have used all my leave on bed rest, and have to go back to maintain the health insurance.
•Don’t pressure me to have more children quickly, or to chose a VBAC. I’ve been through something traumatic. My body has failed me at a very primal level to have a preemie. However, if I want a VBAC or more children please don’t tell me that I’m nuts for wanting one, or being sad if I can’t find a doctor to do this. Please support my choices.

General NICU/Medical Questions/Visiting

•Call and ask if I want visitors. I wanted people to come see my baby, but I needed to know so I could be there. Most NICU's have a limited visitor policy, so I need to be able to do some planning.
•Please don't be hurt if I don't want you to visit. I may not have the energy. Please do not expect to hold the baby, as my time holding my baby is very limited and honestly, I can't spare that time with others.
•Please don't continually ask me when my baby will be coming home. I have no idea.
•Please don't compare my baby to other preemies you have known. Maybe I'm the only one but even the positive stories bugged me because I wasn't sure my son was going to be one of them.
•Please tell me how cute my babies are and try not to go overboard on the "look how tiny!" stuff.
•Please take your cues from me and the other people in the NICU and don't freak out at every alarm.
•Research is great. Educating yourself is awesome. Please do not act like you are an expert on the subject because you read something on the internet or know a friend of a friend. Each baby is unique and different, and as such my baby may not fit into what you have read. Please do not attempt to teach me about my baby.
•Please don't ask when my child is finally going to "catch up" with other children. I DON'T KNOW! It has been a year and Lilly still hasn't "caught up". She may always be a little behind and I don't really care, I'm just glad that she is alive. Try to focus on what my child can do, not what they can't.
•I appreciate that you had a close friend or family member with a baby in the NICU and you have seen a NICU baby before. I hate to sound harsh, but if it wasn't your baby you really cannot completely understand how I feel.
•Don’t tell me that your neighbor who was 8 oz is now at Harvard.
•Don’t tell other people when they meet my DD that she was only a pound and look at her now. She is a beautiful happy baby girl not a freak show.
•Don’t compare my child and her development to other preemies. It may give them hope but there will be other things that can happen to that baby that didn’t happen to my baby.
•Don’t expect me to answer your call or return it within the first 4 weeks of my preemie's arrival.
•Don’t expect me for dinner today, Sunday, any upcoming holiday maybe for the next year. Now, because I will spend it w either my family at home or in the nicu. Later because your child may give my baby rsv and it could hospitalize her or kill her. Or maybe she doesn’t like the loud crowd.
•Don’t describe my child as anything but a beautiful baby.
•Don’t use animal words or toys to describe them.
•Don’t ask about doll clothes.
•If I will allow you to visit, meet me at the nicu at the said time. Don’t expect me to pick you up, drive with you whatever.
•Do give me money for the parking I will be ok and besides I can pay for tomorrow's parking.
•PLEASE, PLEASE don't tell me that my baby is so big, and already caught up that couldn't possibly have been in the NICU.
•Don't then ask me why my baby isn't doing such-and-so yet, so-and-so's baby is doing it who was born within days...
•Don't tell me how "lucky" I am to have a small baby...I didn't WANT a small baby...
•Never compare my baby to a runt.
•When you come into the NICU to visit my baby, focus only on my baby...don't peer at anyone else's baby. Privacy is nonexistent in the NICU, so we parents and visitors have to respect others' right to privacy and keep our eyes and ears on our own babies only.
•Ask me questions! There's a lot about preemie care and NICU life that people don't understand, not to mention questions about my baby's condition. Don't be afraid to ask me...most of the time I am willing to answer and explain because talking about it helps me understand it too, and if you understand more then you can be more supportive.
•Even if you had a preemie 10, 20 or 50 years ago, doesn't mean that advice hasn't changed about how to take care of preemies. My step mother kept hers in an oven and chain smoked, according to her. She was offended when I wouldn't let my son over to her smoke filled house.
•Also if I am crying it isn't Post Partum Depression, it's because all my hopes and dreams for a healthy pregnancy, vaginal delivery and healthy baby have blown up. I don't need medication, I need support!
•That said, mommies of Preemies/Nicu babies are at high risk for Post Partum Depression. Please keep an eye on me, without smothering me, and help me get needed support and treatment if PPD does hit me.
•If you made an appointment to visit, please be on time. I may have scheduled a pumping session around your visit, and your being late will mess this up and I could end up engorged and in pain.
•Ignore the tubes and wires and tell me he is beautiful. Because he is.

Illness/germs/After Nicu

•Please let me know if you are sick. If I get sick, I can't see my baby, so I don't want to risk it. If you are sick at all, please do not come and see my baby.
•Please don't tell me I'm being an overprotective first time mom when I won't let you hold baby or bring baby to your party, we spent months in the hospital, and are not eager to return.
•Please don't tell me I'm being ridiculous when I'm fastidious about hand washing and keeping sick people away from my baby, RSV kills little babies like mine.
•I wish that people would respect that just because he is home doesn't mean he is like every other baby.
•We chose not to do the RSV shots (don't flame me) and kept secluded and made everyone who did come swear they were well and wash with soap water and Purell if they came in. Baby was only "family held" for a year as well. But still one "friend" came to bring a meal and walked in with 3 sniveling clearly sick with cold kids into my living room. I retreated to the upstairs and had my husband get her out quickly. Didn't eat the food either! I should have known. This same UA violation of a friend came to my daughter's funeral with her kids in flip-flops and shorts and t-shirts. I was stunned the unfunny joke in the family now is that she said 'hey kids lets stop at a funeral on the way to the pool!' I really can barely talk to her any more.
•Don't tell me how you can't believe how sick my preemies get. Just because you had a child at 36 weeks and/or you know other preemies that don't get sick doesn't mean mine don't get sick. We've battled more then our share of colds and illnesses and to be told we must be making it up because no one else's kids get sick as often as mine is an insult.
•Don't tell me how lucky I am that my babies will take a bottle and pacifier.
•Just because they are now 11 and 12 pounds doesn't mean they are immunologically as strong as term babies at that size.
•Don't even think about touching my babies without using antibacterial hand sanitizer... even if you think it contributes to allergies in our society. My babies are in the middle of RSV season!
•Don't expect to hold a baby when you come over (especially soon after they came home). I may not want them out of my arms.

Emotional Support

•Please don't preach to me. If you have not been here as the mother of a sick baby, you don't know anything about this.
•Please don't "should" on me. I'm doing my best. Please don't tell me how I "should" feel, react, behave. Please don't tell me I "should" live at the NICU, or judge me for staying at the hospital all the time.
•Please understand that while my baby is in the hospital that is where my focus is. Please don't expect me to come to social activities. This is very important when I'm on bed rest.
•Please don't give me parenting advice. I'm not really parenting my baby anyway; I'm doing what the hospital allows. I probably don't have the emotional energy to fight hospital policy.
•I'm still a new mom. I'm hormonal. Please be kind to me, and give me lots of breaks for any bad behavior.
•I'm tired. Please don't say "be glad your baby is in the hospital" or anything like that. I am not sleeping well; I'm either up pumping or worried for my baby.
•Please don’t ask what I did to cause this.
•Please don't ask questions I can’t answer, like will my baby ever be "normal".
•Please ask how I am, I may need a shoulder.
•Don't back away when I cry, it is very emotional to have a baby sick.
•Please don't casually ask "How's the baby doing?" Even a year later... there won't be a short answer unless I'm blowing you off and I hate to feel rude. If you really want to know then I'll usually be happy to share.
•My friends and family were very supportive when we were in the NICU, my mother in law would listen and ask questions. My mom would ask me how is was doing. These two women who like to tell me how it is, took a step back and listened. It was nice.
•PLEASE don't try to tell me that you understand, because unless your child/baby is sick, you truly, honestly DON'T.
•Please don't tell me how you know of this other preemie who's now 18 and 6 feet tall and completely healthy.
•Please don't tell me about another smaller, younger baby who is 'just fine' because every baby is different, has had different circumstances in utero, and frankly, isn't my baby.
•Please don't say clichéd phrases like, "if it was meant to be...", no baby is meant to be born early and sick.
•Please don't tell me "at least you've had this much time with him/her", when my baby's health has been going downhill.
•Please don't tell me a story about your friend's cousin who had a baby so much smaller than mine and tell me what a "good size" my daughter is and how she will be okay. Four pounds isn't a good size to me, it is scary.
•Thank you for the congratulations but please don't pretend that everything is wonderful right now and I should be a glowing new mother.
•It is not easier to be a new parent to a preemie because I'm "resting and letting someone else take care of her." I want to be taking care of her. Waking up every three hours to pump is not restful, and it is much, much harder than waking up next to your sweet newborn baby.
•I'm not "over it" and I might not ever be. Try not to be awkward, change the subject, or roll your eyes if I still get emotional about my daughter's birth and NICU experience 2 years later.
•Please understand that my 3 year-old may not know how she feels, might not be nice to you right now, or talk to you at all, and will not be able to answer the question about how it feels to be a big sister.
•Don't ask when I'm having more children, or if I will try for a boy, or nod knowingly and say 'It is probably for the best" if I say we are done having children.
•Don't disappear off the face of the planet after my baby is born. If you are scared of the hospital, tell me. If you don't know how to deal with me in a fragile state, let me know it is tough for you. But walking away completely...makes me feel that you were never my friend, especially if you try to come back into my life after 6 months of not talking to me.
•Don’t give me a hard time because I didn’t tell you details about whatever was happening. It was hard enough for me to understand and discuss w my dh.
•Unless you have also spent 12 plus weeks in the nicu or picu with your child. Do not tell me what I should do, what I should have done, how I should act or what I should tell you. If you're hurt because I didn’t give you details or blew you off, I have the rest of my life to listen to you and I may not have had that time with my child.
•On the second point, (we were only there 6 weeks), but I want to stress that this goes for mothers, sisters, nurses, social workers. If you have not been there done that, you do not understand. Don't say you do. This applies to the mom of the mom, and MIL too. (Both my mom and MIL had problems with how I "did" the NICU and I had to deal with them as well as a NICU baby.) Very well said!
•Please don't compare my baby to other preemies you have known. Maybe I'm the only one but even the positive stories bugged me because I wasn't sure my son was going to be one of them.
•Not me, I loved every single happy story. We have a cousin who was a 29 week preemie miracle over 40 years ago (guess what the nuns did - kangaroo cared him-moms weren't allowed to hold, just nurse/nuns). I told him he was Kalleigh's role model in the family.
•Don’t keep pestering me for answers. Don’t say- But you said she was doing good. Guess what, that all can change in a second which is why they call it an emotional roller coaster.
•I don’t have the time or emotional energy to deal with your drama. Please keep it to yourself.

Gifts/ Physical needs/Cards

•Don't ask me what I need. I don't know what I need. Give me some suggestions if you want to help. Like "Can I take your laundry home and bring it back?" "Can I come load your dishwasher and wash the pans?" Can I clean out your car?"
•Please congratulate me on my new baby. Please do not act like my baby is dead. Please do not send "thinking of you" or condolence cards. Please send me a congratulations on your new baby card.
•Please bring over food and offer to baby-sit my older children. I have two neighbors who babysat my 2 year old often and this was just the best gift I received.
•Please feed me, even if I say I am not hungry - just leave the food where I can get to it.
•On the food thing, most homes need milk, bread, toilet paper, and laundry soap on a regular basis. If you want to help but don't know what to do, purchase a regularly used household item and drop it by.
•Bringing over dinner, without asking, was a gesture so sweet it brought me to tears.
•Baby gifts, even when my child is in the hospital, are wonderful and give me joy and something to look forward to watching her grow into (and I'm sorry if the thank you notes are late).
•Do bring to my house a hot dinner or something you know I love to eat.
•Do drop off a care package of tabloid magazines, anything you know I like to read or something I like to do to pass time. Pumping rooms are so lonely and need something to read. Besides, the nurses also like tabloids and it takes the edge off sometimes.
•Do offer to clean my house, laundry, dishes, take my children or pay the sitter for me.
•Do give me the cutest preemie outfit you ever saw and say you saw it and thought of my baby.
•Do give me a mama brag book so I can put the babies pics in there to show people.
•Offer to bring me lunch at the hospital while I'm there with my baby, don't expect conversation, but if I seem to need to talk about it, let me even if you've heard it already.
•Please give me granola or health food bars, food I can sneak and eat in the NICU.
•Candy is welcome as well. If you give me wrapped candy, I can pass this on to the nurses.
•I'd love a nice soft shawl or sweater, something small, but easy to remove. It gets very cold in the NICU sometimes.
•It is dry in the NICU, so a nice lip balm or lotion would be nice. Please go easy on any scented products, as one of the ways my baby is comforted is by my scent, and strong perfumes irritate little tiny noses.
•One of the kindest gifts I received was a tabloid left on my office chair with a post-it on it saying, I know you love these, in an ashamed way. It was so very thoughtful. There is only so long you can stare at your baby sleep in an isolette before you get very bored. That gift led to an actually fun discussion with the nurses about is baby Suri real.
•I welcome any offers of watching my older child so my husband and I can be in the NICU with the baby!
•Don’t send me a sympathy card, thoughts and prayers cards and don’t give me the standard BS answer "If there is anything I can do for you, call me." Send me a blue or pink card and say I am thinking of you and your beautiful baby.
•Do stuff that you know I need or want done. I still need a gallon of milk, eggs, stuff for dd1, etc. All the stuff you pick up at the grocery, we need too. If you want to drop it off, please do!
•Don’t tell me, what does your dh or you have to visit EVERYDAY? Well yes, its our child and we will and we don’t need to actually answer that...
•If you just found out and you’re an acquaintance from church, school etc don’t drill me how horrible it is. This happened to me- a couple who went thru out baptism class called me one afternoon as I just walked in. And was going on and on how horrible it was for us. I was on a high for doing Kangaroo care that week for the first time and this weirdo was telling me how "awful and horrible what happened to us". After a minute, I cut her off and said can you call me another time???

Pictures

•Don't pester me to see photos of my baby in the NICU. She is naked and in pain and it hurts her dignity to be stared at and gawked over.
•For me, it was please tolerate me as I email out tons of pictures, accost almost everyone with pictures, ask you to watch videos on the tiny screen on my camcorder, and talk endlessly about my baby. My DD had a diaper on, and was not in pain, just tiny, so this is one of those we are all different things. I loved sharing pictures.

Nursing/Pumping/Breast Feeding/Formula Feeding/Feeding challenges

•Please don't judge me if nursing is not going well. I'm trying. It is very hard to pump. My time is so tight, and pumping is just one more time and emotional demand on me. If I ask for help, please give it. Please don't judge me if I cannot keep up nursing. It is emotionally draining. I'm tired.
•If I ask for help with pumping/nursing and you know the answer, please help me. If you don't than say so. Please don't guess and give me bad advice.
•Please don't talk about how easy it was for you to breastfeed and pump. I tried the best I could; it simply didn't work out for us.
•Don't ask me how I intend to feed that teeny baby with my chest...don't I smother her?? (i.e. for those who can't figure it out, Adara was small, my chest was...is...rather large) (oh I HATED this one - probably because I was terrified of it already!!)
•Also if you are coming during a feeding or an attempt at breast feeding, your visit comes second to my child's schedule.

Suggestions for Medical Providers

•For nurses, especially those who have never had a baby of their own in the NICU and ESPECIALLY for those who don't have children; please remember that although this is your job and you've been trained to care for the specific issues of our children, these are OUR babies and we do have some sense of how to care for and comfort them even if they're very small and fragile.
•For NICU staff, please encourage and empower parents to research and be involved at their own comfort level. It seems too easy for the staff to "just do their jobs" and forget that this is a life changing, traumatic event that involves a mommy, daddy and their baby. (We were told that ds wouldn't do well with the stimulation of touch, at 30 weeks, so of course we didn't want to touch him and negatively affect him. It was over two weeks before I held him because no one told me that it would be okay and I was still too stunned at that point to know any better).
•For NICU staff, occasionally check out recent research in neonatology. The internet is an easy place to find it. It's frustrating as a parent to continually confront "outdated" information with nurses and other staff.
•Never tell me I caused a brady/ desat/ low temperature. Help me touch my baby and manage her over stimulation issues.
•Let me do what I can. Teach me to do what I can, but need to learn. I can change diapers, bathe the baby, change the bedding, take temperature, etc. Please help empower me to be involved with my baby.
intorainbowz is offline  
#2 of 31 Old 01-20-2007, 03:11 PM
 
Valian's Avatar
 
Join Date: Oct 2005
Location: Upstairs where its warm.
Posts: 1,070
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thank you for this!

-The word "ONLY" does not belong in our conversations. There is no, "he was only 6 weeks early." Having a preemie is challenging on many levels, period, regardless of how early or close to term s/he arrived.

- Late pregnancy may be uncomfortable for you, but don't ask me when I think it would be 'safe' to try and induce your baby early. Listening to you contemplate turning your baby into a preemie on purpose, and without cause is heartbreaking for me.

Breastfeeding advice:

- Preemies have different needs and patterns for eating/nursing than full-term babies. Please do not try to pass your experience and advice with full-term babies onto women with preemies. Words like supplementing, pumping, formula, bottles, and schedule are part of our vocabulary for a reason.


I'll probably come back and add more as I think of them.
Valian is offline  
#3 of 31 Old 02-19-2007, 03:46 PM
 
Zan&Zav's Avatar
 
Join Date: Nov 2006
Location: Fantasy Island
Posts: 435
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
DO NOT B#$%H me out and say I am keeping my baby in a bubble in RSV season. Damn straight i'm keeping him in a bubble, cause i'm doing it so we DONT go back to intensive care.
Zan&Zav is offline  
#4 of 31 Old 02-19-2007, 07:32 PM
 
smittel3's Avatar
 
Join Date: Feb 2007
Posts: 13
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
OH MY!! That post was amazing! It was everything I wish I had the emotional energy and wherewithall to tell people when we were in the NICU for 11 weeks after we lost one twin and were scared to death with the other! Well said!
smittel3 is offline  
#5 of 31 Old 10-01-2007, 02:34 PM
 
Clarissa1973's Avatar
 
Join Date: Sep 2007
Posts: 17
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thanks for the post.....I have felt many of those same feelings and really needed to know others have the same feelings as me! well said! Our little one was born 6-weeks early due to membrane rupture.
Clarissa1973 is offline  
#6 of 31 Old 11-05-2007, 11:37 AM
 
LaFlaca1226's Avatar
 
Join Date: Oct 2007
Location: Pennsylvania
Posts: 97
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thank you for this helpful list.

My best friend had her baby at 28 weeks, and he's in the NICU. I have a 3-month-old term baby, and it's hard to know what to say to my friend or how to act. I am so afraid of saying the wrong thing.
LaFlaca1226 is offline  
#7 of 31 Old 01-18-2008, 06:42 PM
 
fairejour's Avatar
 
Join Date: Apr 2004
Posts: 972
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Please don't tell me that now that my DD is "better", you don't want to see the pictures from when she was in the NICU. She was there for her entire newborn period, 6 weeks (long time for a full term otherwise healthy child!) , and yeah we took a lot of pictures of our angel. But no, I will not take them out of the scrapbook because they make you uncomfortable.

Oh and NEVER tell a momma that exclusivly pumping will never work. I don't need to hear that, I need support. And BTW, made it 13 months!
fairejour is offline  
#8 of 31 Old 01-18-2008, 07:00 PM
 
justmama's Avatar
 
Join Date: Dec 2002
Location: beginning anew
Posts: 5,814
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 12 Post(s)
Oh thank you so much for this list!!!! And I want to agree iwth Valian about the word ONLY. My daughters was 34weeks and 33weeks respectively and I get the "oh she was only 6 weeks early. that's not too bad." all the time. It hurts me. It was a horrible experience for 11 days with each of them visiting at least twice a day, pumping around the clock, living sleep deprived. And yes, they were good weights for their gestational ages but NEVER is it normal for a baby to come out weighing 4 or 5lbs. And never is it normal for a mama to leave the hospital without her baby. And it hurts. And it's not easy to just "get over." So don't ask me to. I might not have had the experience that moms of micro's do but I still had a rough time with our nicu experiences and I need to be cut a break!:

treehugger.gifjog.gifgreenthumb.gifknit.gifnamaste.gif

justmama is online now  
#9 of 31 Old 01-29-2008, 02:28 PM
 
catherinewheel74's Avatar
 
Join Date: Jan 2008
Posts: 2
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
What a great thread My son is almost 3 now...born at 29 weeks. I wish I had seen something like this 3 years ago!

I'm probably repeating things that I missed in the list, but i remember a few thoughts from my experience as a preemie parent.

for the medical staff: we LOVED the staff ...they were angels to us. and we put our trust completely in their hands to help our son get through those early days. BUT....once he was nearing discharge, i made a few decisions; i decided i did not want fortifier added to his feedings...i also had concerns about the iron supplement and how much it was upsetting his stomach. i just wwanted to be able to make those decisions without feeling as though i had 'horrified' the staff. i was just trying to do best by my son

for our family/friends: we WANTED people to visit us....we wanted people to see our son. although it was stressful, we were also very proud....we still wanted to show him off we had lots of cards and letters which were wonderful....but i wish people hadn't been so reluctant to visit us.

having a preemie doesn't just mean having a 'small baby'...i think because many people didn't visit us, they really didn't have an understanding of what it meant to have a preemie. the wires, monitors, feeding tubes....infections, IV's , blood transfusions....it's more than just being in hospital to 'gain weight'.

i think we were fairly relaxed parents in terms of having a preemie.... we tried not to 'dramatize' it in any way. but there were times when we were still very protective...especially during that first year. i was frustrated at the slightest indication from someone who thought we were being 'paranoid first-time parents' when we tried to keep him away from other sick kids. a cold for another baby (our nephew) meant bronchitis and 4 weeks of puffers and antibiotics for our baby in his first year. No we were not being over-reactive...we just knew his vulnerabilities.

after DS had been home awhile, ANY comment implying that we were spoiling him, etc.....first of all, we probably did spoil him a bit in the sense that we cherished everything about him and every moment with him. we considered him a miracle to us. but having a preemie also meant that i did EVERYTHING differently than what i would have expected....(this was also a lesson to me to not judge the parenting styles of other parents). i did not 'parent' the way i had expected i would....instead i just tried to follow the cues of my son. that meant smaller feedings, but more often.....he was not a good sleeper at first....he had a tendency to become easily overstimulated......and we co-slept from the beginning because we noticed that his breathing stayed more regular and he slept more soundly. it really frustrated me at the slightest implication that we were doing things 'wrong'----holding him too much, not making him cry it out, etc.....there ARE differences with having a preemie. so just let me do what i need to do....
catherinewheel74 is offline  
#10 of 31 Old 01-30-2008, 12:29 AM
 
tripsmom's Avatar
 
Join Date: Apr 2007
Posts: 2
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thank you! I wish I'd had this kind of forum to go to for support, education, encouragement when my babies were in the NICU 4 years ago. It can feel very isolating when everyone around you (friends/family) has no idea what you are dealing with or how to relate to you.

Danielle
http://mooreboysrus.blogspot.com/
tripsmom is offline  
#11 of 31 Old 04-16-2008, 03:51 PM
 
momtoafireteam's Avatar
 
Join Date: Aug 2007
Posts: 758
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
After they come home:

- Please dont disallow my feelings with something like "well, she is home now, its all over." or "Yes, the birth went badly, but you still got a healthy baby at the end of it." The NICU doesnt end the day you get discharged. It lasts in memories, and precautions, and emotions. My daughter was most likely in NICU because of me. Losing my VBAC, being subjected to a horrific c/s AND THEN having a baby in the NICU who I couldnt hold, touch, even see through all the tubes and masks, that pain lasts. Its real to me, and while I am eternally grateful to have her home, the circumstances of her birth are something I will live with for the rest of my life.

Mama to nine gorgeous babies, with finale #10 due April'14.
momtoafireteam is offline  
#12 of 31 Old 05-06-2008, 12:05 AM
 
Ruthie's momma's Avatar
 
Join Date: May 2008
Location: Monument, Colorado
Posts: 1,268
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by momtoafireteam View Post
After they come home:

- Please dont disallow my feelings with something like "well, she is home now, its all over." or "Yes, the birth went badly, but you still got a healthy baby at the end of it." The NICU doesnt end the day you get discharged. It lasts in memories, and precautions, and emotions. My daughter was most likely in NICU because of me. Losing my VBAC, being subjected to a horrific c/s AND THEN having a baby in the NICU who I couldnt hold, touch, even see through all the tubes and masks, that pain lasts. Its real to me, and while I am eternally grateful to have her home, the circumstances of her birth are something I will live with for the rest of my life.
You have expressed the very same feelings that I have had since my little one was born last June...the pain does last. It's a shock to go from pregnant Earth Momma with a harmonious pregnancy to an emergency ceserean (within 45 minutes of broken meconium stained waters). I never even felt a contraction...

I never imagined the guilt I would feel about the loss of those precious first moments (and days). And, I never anticipated the subsequent effect our traumatice birth experience would have on our breastfeeding relationship. Everyday, I cherish my time with my DD .

Libby blahblah.gif, momma to my precious little girl (6/29/07) 
                        and wonderful little man (12/1/10)

Ruthie's momma is offline  
#13 of 31 Old 08-03-2008, 08:48 PM
 
In Exile's Avatar
 
Join Date: Jan 2007
Location: spooky northeast
Posts: 702
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Don't ever ask if I did something "wrong"- it is hard enough to have a 5 pounds baby at fullterm withouy anybody implying you "did something wrong".
Nope, I didn't smoke and still he was only 5 pounds. Don't tell me, my vegetariansm is the reason he was only 5 pounds.

Don't try to take of clothing of a peacefully sleeping baby- maybe it's the very first time this sick baby is being able to sleep peacefully-and maybe I was hiding a purple arm that had a painful IV to it- don't just go and "do things" with my baby.
In Exile is offline  
#14 of 31 Old 08-04-2008, 11:04 PM
 
momoftinyhayden's Avatar
 
Join Date: Aug 2008
Location: Western, Kentucky
Posts: 43
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I know most of y'all are more experienced with having a preemie in the NICU than I am but here's a few things i didn't see on the list that i personally went thru which might help others.

First i should explain our situation a bit

I went to the doctors for a routine ultrasound. An hour later my doctor comes in and tells me the baby has a Nucal cord (cord around his neck) twice, and because it was quite tight i had to go in for monitoring on tuesdays and fridays until my due date. The first tuesday i went in for monitoring my doctor came in and said I was being air lifted to a hospital 3 hours away which had the means to deliver and care for an early baby. That itself freaked me out. Anyway, I was in the hospital for 2 weeks having ultrasounds every other day. The cord was getting tighter and i did not have enough amniotic fluid to keep the cord loose.. they didn't know where it was going i wasn't leaking or anything.

Anyway Hayden was born at 30 weeks, he weighed 2 lbs 15 oz at birth. A few of the nurses were very supportive and tried to reassure me as much as they could.

Here are a few do's and don'ts for things i had to listen to

* Do not let them tell you "your baby is big for being a preemie" Because to a new mom of a preemie he's tiny and fragile.

* Do not let them talk to you like you are ignorant. Just because you do not understand big medical terms does not mean you are stupid. Ask questions if you don't understand something until you do understand them.

*We had a nurse tell us we should go do something instead of sitting at our baby's bed side all day and most of the night. We simply told her we were not 3 hours from home because we were on vacation. We were there because our child was in the NICU and that's where we needed to be. Most of the nurses were not use to having parents bedside all the time.

* Do not let them tell you they are doing something with your child for example a pic line and act like it's not a big deal.
To a someone who hasn't had a preemie and doesn't know what to expect the smallest things are enormous. They don't understand they do stuff like pic line everyday but to a parent of a preemie it's a first and it's a major thing to us.


I had pumped and taken the breast milk to the hospital everyday for the first 6 weeks. In this time my son had desat'ed and had Brady's everytime they fed him. Finally one of the nurses had stated they were going to do a G Tube on him. This freaked me out and made me angry because there was so many other things they could try before going to that extreme. Anyway, I insisted they switch him to lactose free milk which i'd been stating for weeks I thought he was lactose sensitive like my other child was because they'd told me it runs in families. It took me threatening to have my son transfered to another childrens hospital before they would try the lactose free..... safe to say they switched him and he didn't desat or have anymore brady's.

I was a pain in the butt mom making them explain everything they did or planned to do.

* Do not let anyone minimize what you and your child are going thru, because for you and your little one it's something major.

*Do not let anyone let you feel like you are being over dramatic because you aren't. Your hormones are going insane plus you don't know what's going to happen with your baby. You have the right to cry anytime you wish to cry.

For me it was almost an everyday occurance. Having a child in the NICU is an emotional roller coaster. You can go from being extremely happy because of some major milestone like your child going from CPAP to a regular Nose Cannula one day to crying like a baby the next because your baby has had a set back.
momoftinyhayden is offline  
#15 of 31 Old 09-09-2008, 03:33 AM
 
marcosmom9508's Avatar
 
Join Date: Sep 2008
Posts: 1
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I just became a preemie mom and am starting to hear many of these things from well meaning people. I plan to forward this to my m.i.l. (husbands mom) who thinks she needs to be included in every decision/discussion of what is happening with our son. She is trying to be helpful but does not like when people dont take her advice or do what she suggests. She thinks because she raised 4 kids, she can tell anyone younger with less kids what to do. She also thinks we spoil our 9 y/o daughter because she has been our only child til now and we get her lots of gifts on Christmas and her B-day. Thats how I was raised and she wants me to "ask my mom to stop buying her so much because it leaves other people with no idea what to get her" because she "has everything".
marcosmom9508 is offline  
#16 of 31 Old 09-09-2008, 09:45 AM
 
buckysprplmonkey's Avatar
 
Join Date: May 2006
Location: Pittsburgh, PA
Posts: 604
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Would it be ok for me to excerpt bits of this on my blog? This might be a good way to communicate to friends and family how I'm feeling about things.

And I'd love to add:
Don't tell me at least I'll be able to recover from the cesarean without having the baby at home to take care of.
buckysprplmonkey is offline  
#17 of 31 Old 12-23-2008, 11:41 AM
 
Amys1st's Avatar
 
Join Date: Mar 2003
Posts: 8,449
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
yes! share this with the world! I am so glad this list can help so many people.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
Amys1st is offline  
#18 of 31 Old 12-23-2008, 02:48 PM
 
McNic's Avatar
 
Join Date: Jan 2008
Posts: 26
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I love this list...I wish I had it at my disposal 3 years ago.

Too bad we couldn't just add: "If you have not had a prem, keep your comments, suggestions and critical observations to yourself."

I also like the comment that "The NICU experience doesn't end when you leave the NICU". It wasn't until DS was 2 that I felt we could breathe a sigh of relief about his prognosis. (And I realize that we are fortunate to be able to have done so...there are many prem parents dealing with prem effects 4,5,6 years later.)

Mama to "The Pud" - 4 years.
We both have todder onset Charcot Marie Tooth 1A.
McNic is offline  
#19 of 31 Old 01-05-2009, 09:08 PM
 
jlovesl's Avatar
 
Join Date: Dec 2008
Location: edmonton
Posts: 128
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by intorainbowz View Post
I’ve organized the responses and grouped them. The only editing I did was to check spelling and grammar. As many different people contributed to this list, sometimes the answers contradict themselves. Please go with what you feel best would help your loved one.

The following members contributed to this list: IntoRainbowz, Zan&Zav, lindberg99, OGirlieMama, sunflowers, splendid, lena1984, Cressida, felix23, Lousli, Amys1st, Aimee21972, tbavrbab, curlymama, nathansmom, alliteration, homewithtwinsmama, onyxravnos, Rachel J., DoubleLove

If you want something added, please either PM me or just add it on. :


Bed rest/High Risk Pregnancy

•Please don't judge me or my choices(this includes my birth choices and choices made in the NICU). This was not my dreamed for pregnancy, and nothing is going the way I want it to.
•There is no one way to "do bed rest" correct.
•Please don't tell me all the horror stories you know about pregnancies gone wrong. It just adds to my worries. My doctor probably has done a very good job educating me about risks and outcomes. Once people knew I was having problems, I heard all about their, their family, their friend’s cousin’s neighbor and their baby who died/was brain damaged/missing an arm etc
•Don't tell a pregnant woman who's baby is failing to grow how slim she looks. Pregnant women are not supposed to be thin. Don't tell someone when you learn they are having a baby the next day that "You don't even look pregnant." Most women probably want to be told they look thin, but not a woman who has fretted over every ounce she has not gained.
•Please lend my videos/books that you have in your libraries. That saved me having to get DH to get them for me. Even if you don't think I would usually read or watch that type of book/movie try me. I got REALLY bored on bed rest, and the John Wayne collection I was lent was very entertaining.
•Unless you are a doctor, please don't give me medical advice, unless I ask for it. (Even if you are a doctor, but not mine, think about this one.) I got really tired of having to explain over and over again to people that were not medical providers why we were doing what we were. If I ask, give me your opinion.
•Please don't tell me how hard the last few months of pregnancy are or complain how horrible it was to be overdue around me.
•Asking me if I am SURE I had my dates right...because she did so well, I MUST have miscalculated. I am sub-fertile (not fertile, not infertile, just takes lightening striking a lottery winner, k?) and I track my cycles like a hawk, there is no way in the world I got my dates wrong...AND the dates were confirmed by SEVERAL first trimester ultrasounds because I have a tendency to miscarry frequently. GOT IT?!
•When hearing about the birth, don't say - "Is she alive?" that's a little blunt and brutal don't you think?? If you are curious about her condition, try something a little more tactful...like "How is she?"
•Don’t tell me about how lucky I am to not have to go thru the last month or two of pregnancy.
•Don’t tell me how a cesarean-section is so much easier and I’m lucky I had to have one.
•Don’t tell me how it’s ‘no big deal’ and everything will be fine because people have preemies all the time and they are just fine.
•Don't compare my preemie baby's death to the death of an older person as no big deal since "you didn't know her anyway".
•Don't tell me how lucky I was to have my babies at the hospital so I could recover and catch up on sleep. There is nothing more in this world I wanted then to have my babies with me at all times. There is absolutely nothing 'lucky' about having babies in the hospital.
•Don’t judge me if I have to go back to work while my baby is in the hospital. I may have used all my leave on bed rest, and have to go back to maintain the health insurance.
•Don’t pressure me to have more children quickly, or to chose a VBAC. I’ve been through something traumatic. My body has failed me at a very primal level to have a preemie. However, if I want a VBAC or more children please don’t tell me that I’m nuts for wanting one, or being sad if I can’t find a doctor to do this. Please support my choices.

General NICU/Medical Questions/Visiting

•Call and ask if I want visitors. I wanted people to come see my baby, but I needed to know so I could be there. Most NICU's have a limited visitor policy, so I need to be able to do some planning.
•Please don't be hurt if I don't want you to visit. I may not have the energy. Please do not expect to hold the baby, as my time holding my baby is very limited and honestly, I can't spare that time with others.
•Please don't continually ask me when my baby will be coming home. I have no idea.
•Please don't compare my baby to other preemies you have known. Maybe I'm the only one but even the positive stories bugged me because I wasn't sure my son was going to be one of them.
•Please tell me how cute my babies are and try not to go overboard on the "look how tiny!" stuff.
•Please take your cues from me and the other people in the NICU and don't freak out at every alarm.
•Research is great. Educating yourself is awesome. Please do not act like you are an expert on the subject because you read something on the internet or know a friend of a friend. Each baby is unique and different, and as such my baby may not fit into what you have read. Please do not attempt to teach me about my baby.
•Please don't ask when my child is finally going to "catch up" with other children. I DON'T KNOW! It has been a year and Lilly still hasn't "caught up". She may always be a little behind and I don't really care, I'm just glad that she is alive. Try to focus on what my child can do, not what they can't.
•I appreciate that you had a close friend or family member with a baby in the NICU and you have seen a NICU baby before. I hate to sound harsh, but if it wasn't your baby you really cannot completely understand how I feel.
•Don’t tell me that your neighbor who was 8 oz is now at Harvard.
•Don’t tell other people when they meet my DD that she was only a pound and look at her now. She is a beautiful happy baby girl not a freak show.
•Don’t compare my child and her development to other preemies. It may give them hope but there will be other things that can happen to that baby that didn’t happen to my baby.
•Don’t expect me to answer your call or return it within the first 4 weeks of my preemie's arrival.
•Don’t expect me for dinner today, Sunday, any upcoming holiday maybe for the next year. Now, because I will spend it w either my family at home or in the nicu. Later because your child may give my baby rsv and it could hospitalize her or kill her. Or maybe she doesn’t like the loud crowd.
•Don’t describe my child as anything but a beautiful baby.
•Don’t use animal words or toys to describe them.
•Don’t ask about doll clothes.
•If I will allow you to visit, meet me at the nicu at the said time. Don’t expect me to pick you up, drive with you whatever.
•Do give me money for the parking I will be ok and besides I can pay for tomorrow's parking.
•PLEASE, PLEASE don't tell me that my baby is so big, and already caught up that couldn't possibly have been in the NICU.
•Don't then ask me why my baby isn't doing such-and-so yet, so-and-so's baby is doing it who was born within days...
•Don't tell me how "lucky" I am to have a small baby...I didn't WANT a small baby...
•Never compare my baby to a runt.
•When you come into the NICU to visit my baby, focus only on my baby...don't peer at anyone else's baby. Privacy is nonexistent in the NICU, so we parents and visitors have to respect others' right to privacy and keep our eyes and ears on our own babies only.
•Ask me questions! There's a lot about preemie care and NICU life that people don't understand, not to mention questions about my baby's condition. Don't be afraid to ask me...most of the time I am willing to answer and explain because talking about it helps me understand it too, and if you understand more then you can be more supportive.
•Even if you had a preemie 10, 20 or 50 years ago, doesn't mean that advice hasn't changed about how to take care of preemies. My step mother kept hers in an oven and chain smoked, according to her. She was offended when I wouldn't let my son over to her smoke filled house.
•Also if I am crying it isn't Post Partum Depression, it's because all my hopes and dreams for a healthy pregnancy, vaginal delivery and healthy baby have blown up. I don't need medication, I need support!
•That said, mommies of Preemies/Nicu babies are at high risk for Post Partum Depression. Please keep an eye on me, without smothering me, and help me get needed support and treatment if PPD does hit me.
•If you made an appointment to visit, please be on time. I may have scheduled a pumping session around your visit, and your being late will mess this up and I could end up engorged and in pain.
•Ignore the tubes and wires and tell me he is beautiful. Because he is.

Illness/germs/After Nicu

•Please let me know if you are sick. If I get sick, I can't see my baby, so I don't want to risk it. If you are sick at all, please do not come and see my baby.
•Please don't tell me I'm being an overprotective first time mom when I won't let you hold baby or bring baby to your party, we spent months in the hospital, and are not eager to return.
•Please don't tell me I'm being ridiculous when I'm fastidious about hand washing and keeping sick people away from my baby, RSV kills little babies like mine.
•I wish that people would respect that just because he is home doesn't mean he is like every other baby.
•We chose not to do the RSV shots (don't flame me) and kept secluded and made everyone who did come swear they were well and wash with soap water and Purell if they came in. Baby was only "family held" for a year as well. But still one "friend" came to bring a meal and walked in with 3 sniveling clearly sick with cold kids into my living room. I retreated to the upstairs and had my husband get her out quickly. Didn't eat the food either! I should have known. This same UA violation of a friend came to my daughter's funeral with her kids in flip-flops and shorts and t-shirts. I was stunned the unfunny joke in the family now is that she said 'hey kids lets stop at a funeral on the way to the pool!' I really can barely talk to her any more.
•Don't tell me how you can't believe how sick my preemies get. Just because you had a child at 36 weeks and/or you know other preemies that don't get sick doesn't mean mine don't get sick. We've battled more then our share of colds and illnesses and to be told we must be making it up because no one else's kids get sick as often as mine is an insult.
•Don't tell me how lucky I am that my babies will take a bottle and pacifier.
•Just because they are now 11 and 12 pounds doesn't mean they are immunologically as strong as term babies at that size.
•Don't even think about touching my babies without using antibacterial hand sanitizer... even if you think it contributes to allergies in our society. My babies are in the middle of RSV season!
•Don't expect to hold a baby when you come over (especially soon after they came home). I may not want them out of my arms.

Emotional Support

•Please don't preach to me. If you have not been here as the mother of a sick baby, you don't know anything about this.
•Please don't "should" on me. I'm doing my best. Please don't tell me how I "should" feel, react, behave. Please don't tell me I "should" live at the NICU, or judge me for staying at the hospital all the time.
•Please understand that while my baby is in the hospital that is where my focus is. Please don't expect me to come to social activities. This is very important when I'm on bed rest.
•Please don't give me parenting advice. I'm not really parenting my baby anyway; I'm doing what the hospital allows. I probably don't have the emotional energy to fight hospital policy.
•I'm still a new mom. I'm hormonal. Please be kind to me, and give me lots of breaks for any bad behavior.
•I'm tired. Please don't say "be glad your baby is in the hospital" or anything like that. I am not sleeping well; I'm either up pumping or worried for my baby.
•Please don’t ask what I did to cause this.
•Please don't ask questions I can’t answer, like will my baby ever be "normal".
•Please ask how I am, I may need a shoulder.
•Don't back away when I cry, it is very emotional to have a baby sick.
•Please don't casually ask "How's the baby doing?" Even a year later... there won't be a short answer unless I'm blowing you off and I hate to feel rude. If you really want to know then I'll usually be happy to share.
•My friends and family were very supportive when we were in the NICU, my mother in law would listen and ask questions. My mom would ask me how is was doing. These two women who like to tell me how it is, took a step back and listened. It was nice.
•PLEASE don't try to tell me that you understand, because unless your child/baby is sick, you truly, honestly DON'T.
•Please don't tell me how you know of this other preemie who's now 18 and 6 feet tall and completely healthy.
•Please don't tell me about another smaller, younger baby who is 'just fine' because every baby is different, has had different circumstances in utero, and frankly, isn't my baby.
•Please don't say clichéd phrases like, "if it was meant to be...", no baby is meant to be born early and sick.
•Please don't tell me "at least you've had this much time with him/her", when my baby's health has been going downhill.
•Please don't tell me a story about your friend's cousin who had a baby so much smaller than mine and tell me what a "good size" my daughter is and how she will be okay. Four pounds isn't a good size to me, it is scary.
•Thank you for the congratulations but please don't pretend that everything is wonderful right now and I should be a glowing new mother.
•It is not easier to be a new parent to a preemie because I'm "resting and letting someone else take care of her." I want to be taking care of her. Waking up every three hours to pump is not restful, and it is much, much harder than waking up next to your sweet newborn baby.
•I'm not "over it" and I might not ever be. Try not to be awkward, change the subject, or roll your eyes if I still get emotional about my daughter's birth and NICU experience 2 years later.
•Please understand that my 3 year-old may not know how she feels, might not be nice to you right now, or talk to you at all, and will not be able to answer the question about how it feels to be a big sister.
•Don't ask when I'm having more children, or if I will try for a boy, or nod knowingly and say 'It is probably for the best" if I say we are done having children.
•Don't disappear off the face of the planet after my baby is born. If you are scared of the hospital, tell me. If you don't know how to deal with me in a fragile state, let me know it is tough for you. But walking away completely...makes me feel that you were never my friend, especially if you try to come back into my life after 6 months of not talking to me.
•Don’t give me a hard time because I didn’t tell you details about whatever was happening. It was hard enough for me to understand and discuss w my dh.
•Unless you have also spent 12 plus weeks in the nicu or picu with your child. Do not tell me what I should do, what I should have done, how I should act or what I should tell you. If you're hurt because I didn’t give you details or blew you off, I have the rest of my life to listen to you and I may not have had that time with my child.
•On the second point, (we were only there 6 weeks), but I want to stress that this goes for mothers, sisters, nurses, social workers. If you have not been there done that, you do not understand. Don't say you do. This applies to the mom of the mom, and MIL too. (Both my mom and MIL had problems with how I "did" the NICU and I had to deal with them as well as a NICU baby.) Very well said!
•Please don't compare my baby to other preemies you have known. Maybe I'm the only one but even the positive stories bugged me because I wasn't sure my son was going to be one of them.
•Not me, I loved every single happy story. We have a cousin who was a 29 week preemie miracle over 40 years ago (guess what the nuns did - kangaroo cared him-moms weren't allowed to hold, just nurse/nuns). I told him he was Kalleigh's role model in the family.
•Don’t keep pestering me for answers. Don’t say- But you said she was doing good. Guess what, that all can change in a second which is why they call it an emotional roller coaster.
•I don’t have the time or emotional energy to deal with your drama. Please keep it to yourself.

Gifts/ Physical needs/Cards

•Don't ask me what I need. I don't know what I need. Give me some suggestions if you want to help. Like "Can I take your laundry home and bring it back?" "Can I come load your dishwasher and wash the pans?" Can I clean out your car?"
•Please congratulate me on my new baby. Please do not act like my baby is dead. Please do not send "thinking of you" or condolence cards. Please send me a congratulations on your new baby card.
•Please bring over food and offer to baby-sit my older children. I have two neighbors who babysat my 2 year old often and this was just the best gift I received.
•Please feed me, even if I say I am not hungry - just leave the food where I can get to it.
•On the food thing, most homes need milk, bread, toilet paper, and laundry soap on a regular basis. If you want to help but don't know what to do, purchase a regularly used household item and drop it by.
•Bringing over dinner, without asking, was a gesture so sweet it brought me to tears.
•Baby gifts, even when my child is in the hospital, are wonderful and give me joy and something to look forward to watching her grow into (and I'm sorry if the thank you notes are late).
•Do bring to my house a hot dinner or something you know I love to eat.
•Do drop off a care package of tabloid magazines, anything you know I like to read or something I like to do to pass time. Pumping rooms are so lonely and need something to read. Besides, the nurses also like tabloids and it takes the edge off sometimes.
•Do offer to clean my house, laundry, dishes, take my children or pay the sitter for me.
•Do give me the cutest preemie outfit you ever saw and say you saw it and thought of my baby.
•Do give me a mama brag book so I can put the babies pics in there to show people.
•Offer to bring me lunch at the hospital while I'm there with my baby, don't expect conversation, but if I seem to need to talk about it, let me even if you've heard it already.
•Please give me granola or health food bars, food I can sneak and eat in the NICU.
•Candy is welcome as well. If you give me wrapped candy, I can pass this on to the nurses.
•I'd love a nice soft shawl or sweater, something small, but easy to remove. It gets very cold in the NICU sometimes.
•It is dry in the NICU, so a nice lip balm or lotion would be nice. Please go easy on any scented products, as one of the ways my baby is comforted is by my scent, and strong perfumes irritate little tiny noses.
•One of the kindest gifts I received was a tabloid left on my office chair with a post-it on it saying, I know you love these, in an ashamed way. It was so very thoughtful. There is only so long you can stare at your baby sleep in an isolette before you get very bored. That gift led to an actually fun discussion with the nurses about is baby Suri real.
•I welcome any offers of watching my older child so my husband and I can be in the NICU with the baby!
•Don’t send me a sympathy card, thoughts and prayers cards and don’t give me the standard BS answer "If there is anything I can do for you, call me." Send me a blue or pink card and say I am thinking of you and your beautiful baby.
•Do stuff that you know I need or want done. I still need a gallon of milk, eggs, stuff for dd1, etc. All the stuff you pick up at the grocery, we need too. If you want to drop it off, please do!
•Don’t tell me, what does your dh or you have to visit EVERYDAY? Well yes, its our child and we will and we don’t need to actually answer that...
•If you just found out and you’re an acquaintance from church, school etc don’t drill me how horrible it is. This happened to me- a couple who went thru out baptism class called me one afternoon as I just walked in. And was going on and on how horrible it was for us. I was on a high for doing Kangaroo care that week for the first time and this weirdo was telling me how "awful and horrible what happened to us". After a minute, I cut her off and said can you call me another time???

Pictures

•Don't pester me to see photos of my baby in the NICU. She is naked and in pain and it hurts her dignity to be stared at and gawked over.
•For me, it was please tolerate me as I email out tons of pictures, accost almost everyone with pictures, ask you to watch videos on the tiny screen on my camcorder, and talk endlessly about my baby. My DD had a diaper on, and was not in pain, just tiny, so this is one of those we are all different things. I loved sharing pictures.

Nursing/Pumping/Breast Feeding/Formula Feeding/Feeding challenges

•Please don't judge me if nursing is not going well. I'm trying. It is very hard to pump. My time is so tight, and pumping is just one more time and emotional demand on me. If I ask for help, please give it. Please don't judge me if I cannot keep up nursing. It is emotionally draining. I'm tired.
•If I ask for help with pumping/nursing and you know the answer, please help me. If you don't than say so. Please don't guess and give me bad advice.
•Please don't talk about how easy it was for you to breastfeed and pump. I tried the best I could; it simply didn't work out for us.
•Don't ask me how I intend to feed that teeny baby with my chest...don't I smother her?? (i.e. for those who can't figure it out, Adara was small, my chest was...is...rather large) (oh I HATED this one - probably because I was terrified of it already!!)
•Also if you are coming during a feeding or an attempt at breast feeding, your visit comes second to my child's schedule.

Suggestions for Medical Providers

•For nurses, especially those who have never had a baby of their own in the NICU and ESPECIALLY for those who don't have children; please remember that although this is your job and you've been trained to care for the specific issues of our children, these are OUR babies and we do have some sense of how to care for and comfort them even if they're very small and fragile.
•For NICU staff, please encourage and empower parents to research and be involved at their own comfort level. It seems too easy for the staff to "just do their jobs" and forget that this is a life changing, traumatic event that involves a mommy, daddy and their baby. (We were told that ds wouldn't do well with the stimulation of touch, at 30 weeks, so of course we didn't want to touch him and negatively affect him. It was over two weeks before I held him because no one told me that it would be okay and I was still too stunned at that point to know any better).
•For NICU staff, occasionally check out recent research in neonatology. The internet is an easy place to find it. It's frustrating as a parent to continually confront "outdated" information with nurses and other staff.
•Never tell me I caused a brady/ desat/ low temperature. Help me touch my baby and manage her over stimulation issues.
•Let me do what I can. Teach me to do what I can, but need to learn. I can change diapers, bathe the baby, change the bedding, take temperature, etc. Please help empower me to be involved with my baby.
All I have to say is this is AWSOME!!!... Every last one is so true.
jlovesl is offline  
#20 of 31 Old 01-08-2009, 01:32 PM
 
KeLs 37's Avatar
 
Join Date: Jan 2009
Location: Philadelphia, PA
Posts: 8
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by momoftinyhayden View Post
* Do not let anyone minimize what you and your child are going thru, because for you and your little one it's something major.

*Do not let anyone let you feel like you are being over dramatic because you aren't. Your hormones are going insane plus you don't know what's going to happen with your baby. You have the right to cry anytime you wish to cry.
I really like these two also...

I'm new to this board, and a new preemie mom- my daughter was born 10/21. It has been a definite emotional ride and no one else but a preemie mom could possibly understand. I know everyone means well, but I think sometimes it just makes it worse for us emotional wise. One point I’d like to add to the list is:

*Please do not ask me every 5 minutes if I’m okay, obviously you can see I’m upset and constantly asking this question just makes it worse because I will tell you “I’m ok” when I’m not just to shut you up and because I don’t want you to be uncomfortable when I want to say “no, I’m not okay”.

The past week has been just about the roughest for me, my daughter and my fiancé. Amelia was diagnosed with Stage 3 ROP on Monday and had to have laser eye surgery yesterday. Docs said she will have tunnel vision for the rest of her life and may be nearsighted on top of that. Not to mention, we are not 100% positive that this laser procedure has even worked to prevent retinal detachment and possible blindness. Everyone keeps saying, she’ll be fine, she wont notice the tunnel vision- but ya know what? It’s still devastating to me as a mother to have to hear this about my child. I feel helpless because I cant ease her pain or help with her problems.

On top of all the eye problems, she is also scheduled for exploratory bowel surgery tomorrow, they know she has a blockage from NEC but not sure how extensive or where.

Ugh, if this experience doesn’t scare you into not having more babies, then I don’t know what will.
KeLs 37 is offline  
#21 of 31 Old 01-17-2009, 11:46 PM
 
Amys1st's Avatar
 
Join Date: Mar 2003
Posts: 8,449
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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!

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
Amys1st is offline  
#22 of 31 Old 01-22-2009, 04:41 PM
 
waldenmommy's Avatar
 
Join Date: May 2005
Posts: 57
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
waldenmommy is offline  
#23 of 31 Old 04-03-2009, 11:19 PM
 
teapot's Avatar
 
Join Date: Jun 2008
Posts: 1
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
teapot is offline  
#24 of 31 Old 05-02-2009, 10:22 PM
 
BellaRose0212's Avatar
 
Join Date: Apr 2009
Posts: 84
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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!
BellaRose0212 is offline  
#25 of 31 Old 05-03-2009, 07:56 PM
 
Amys1st's Avatar
 
Join Date: Mar 2003
Posts: 8,449
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by BellaRose0212 View Post
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.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
Amys1st is offline  
#26 of 31 Old 05-09-2009, 12:49 AM
 
Lindsay1234's Avatar
 
Join Date: Dec 2005
Posts: 1,552
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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!!!

wife. dd1 : dd2
Lindsay1234 is offline  
#27 of 31 Old 05-20-2009, 10:20 PM
 
musiclady's Avatar
 
Join Date: Jul 2008
Location: SC
Posts: 1,490
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Lindsay1234 View Post
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....

Married to my best friend, expecting #1 6/09. Little angel came early- 4/10/09, 2lbs 5oz. Lilah Grace:
musiclady is offline  
#28 of 31 Old 06-17-2009, 12:35 PM
 
19spitfire's Avatar
 
Join Date: Dec 2007
Location: northern California
Posts: 425
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thank you for the list of do's and don'ts. I needed this list today.

Wife to James mom to dd(1999) ds1(2001)and ds2(7/08)
: * : * * : * * :
19spitfire is offline  
#29 of 31 Old 01-29-2012, 07:58 AM
 
teenybaby's Avatar
 
Join Date: Jan 2012
Posts: 1
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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.

 

 

teenybaby is offline  
#30 of 31 Old 01-29-2012, 01:26 PM
 
maryeliz's Avatar
 
Join Date: Oct 2005
Posts: 370
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)


Quote:
Originally Posted by teenybaby View Post

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.
 

 


Blogging at http://chronicladybug.blogspot.com

maryeliz is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off