What NOT to say to parents of NICU babies

blairdavis99

Hi all! Recent new mom here of preemie twins born at 34 weeks on 4/16. I have gotten a tremendous amount of love and support and am so grateful the babies are overall doing well.

BUT.....if one more person says "well at least you get to go home and get some rest before the babies come home", I will probably punch them. First off, leaving the hospital after a tremendously difficult labor experience without the beautiful babies that were born from that experience results in a different kind of pain and loneliness that I wouldn't wish on my worst enemy. There is no "at least" in this situation. Second, I am not at home resting like you all think. I pump milk 8 times per day. By the time I clean up supplies and package milk, that leaves a little over 2 hours before I have to do it all over again. Then I have to bring the milk to the hospital every day, which is a two hour roundtrip drive. And then while I am there, I hold, feed, change, take temperatures, and do anything else I possibly can to bond with my babies that are being cared for by wonderful strangers around the clock. Third, the feelings of guilt and not being able to see them enough and worrying about their health overwhelm my brain. I dart straight up from sleep in the middle of the night sometimes because of worry. (Not so fun with healing c sec scar by the way). So, no, at least I am not getting any rest at home.

Thanks for hearing me out. I needed to say this soooo bad. Anyone else out there with good -intentioned people just saying the wrong things to you?

KutiePebbles

Hi- mom of a 29 wker here. I didn't get too many comments but one I always remember is "I don't know how you do it." I would look at people who would say that and respond with "what?!" I do it because this is what a mother does. I do it because there is no other option. I just do it because I need to and my son needs me now more than ever. I would wonder if people think we nicu moms go home and recover in peace with no trauma and just wait for a call from the nicu to say, "hey your baby is ready." Nope!

I am a volunteer at my nicu now so I hear a lot of preemie stories. Trust me when I say it does get easier. I was in the same boat as you almost a year ago. Pumping 8-10 times per day. Transporting the milk on each trip. Going to NYC to visit my baby when I lived in NJ. Waking up from horrific anxiety and worry out of a dead sleep (if I could actually sleep). Feeling horrible guilt and failure- you name it. Feeling resentment towards preggo ladies and term babies. We spent 76 days in the nicu and he is now a crazy cruising happy as heck, almost one yr old. It will get better. Stay positive and do exactly what you are doing-being a mommy at the baby hotel until they come home. Kangaroo as much as you can and sing to them. Music is great therapy.

For now join preemie support and awareness, life after nicu, preemie babies 101, and nicu ptsd on Facebook. You will receive tons of info and support, plus hear some amazing stories of little miracles. Topics like yours come up a lot, so it will feel like home.

People who have never had a premature birth or a nicu experience will never understand. Things that seems "okay" to say to someone, might not be okay to say to a preemie or nicu baby mom. Just keep up the good work because your doing everything right.

Message me if you want to chat some more.

blairdavis99

@KutiePebbles - thank you, thank you, thank you. It means a lot to be heard and to have support out there in the preemie world. It also is so wonderful to hear that it does get easier and to just keep on trucking. It's true we don't have a choice - it's just what mothers do. But that doesn't make it easy!

allymas

I hear ya!! My preemie girls were born at 32 weeks on 3/1/15. People say the most ridiculous things. I got the "at least you can rest now" comment. And the "you're lucky they'll be on a schedule when they come home" comment. Never ending "I don't know how you do it." My technical due date was 4/24 (2 days ago) so they are still really little. The doc says I still shouldn't be taking them out much and they are too easily over stimulated. While they are doing wonderfully, it's still a challenge...I have 2 other friends with newborns (term babies) and they are out and about with them. I am now getting the "crazy" and "overprotective" comments because I am not bringing them out much. It's not worth the endless overstimulation hiccups and messed up feeds. It will end soon enough!!!
Hang in there though. I feel your pain so badly. It was by far the hardest thing I ever had to go through! Nobody will ever understand unless they've been through it....

DrD30

Hello, I'm new here. My twins were born 6 days ago at 35/3. My runty girl did great and my boy had tachypnea needing CPAP and now issues with feeding. I've gotten comments like "at least you got to bring one home" or comments about them being separated. You can't spend the night in our NICU and leaving him behind every day is the HARDEST thing I've ever had to do.

I also hate "maybe he'll come home tomorrow" or "why don't you just pop him into the diaper beg and bring him home". Those make cry instantaneously.

blairdavis99

@DrD30 - I'm sorry! I feel your pain. My girl was sent home earlier than my boy. Taking care of a newborn preemie on oxygen, a 10 yo & 3 dogs made me exhausted. I tried to get to the hospital as often as I could to see my little guy but never felt like it was enough. I felt like my family was not full until he could come home. The separation was very hard an I got several "at least" comments too. I just wish people would say "I'm sorry. That sounds incredibly tough." Now he is home an it is WAY better. Good luck to you for a speedy NICU stay!

DrD30

We made it out. 12 days for my boy and baby girl ended up being admitted for jaundice. We brought them both home today

apbauer0615

I feel your pain! I had twin boys at 27weeks. Horrible dielvery, first time mom, very emotional. I got tons of stupid comments! "Oh this is the easy part you have nurses taking care of them, just wait til they come home" "this is kind of cool, you get to watch how they grow in your womb" what my mother in law said right before my csection takes the cake-"oh yay I get to see my grandkids" I know it's frustrating but for the most part people are just trying to make you feel better they just don't know what to say. After 73 days in the Nicu i got to take both my boys home on March 30. There is a light at the end of the tunnel. Hang in there

nicolemarie666

I know exactly what you mean!! My little guy was born at 34 weeks and we spend 20 days in the NICU. Between driving back and forth to the hospital, pumping 8-10 times a day, and taking care of the baby during touch time there was no room for rest. My husband finally had to force me to miss at least one touch time a day to go home and sleep because I was so exhausted. I talked myself into it since most newborn moms "sleep when the baby sleeps" and my milk supply was dipping since I was so stress. I remember crying every time I left and was and still am dealing with depression. We've been home a month now and it does get easier. I still pump 8-10 times a day and juggling that with household duties, taking care of the baby, dogs, etc but just being home with your little one is the best thing ever. Hang in there mama!!

jentrapse

I used to hate when people would say, don't worry she is in good hands. It used to make me bawl! Yes, I know she is in good hands and the safest place possible for her, but it wasn't my hands. It wasn't me comforting her, feeding her, or holding her in the middle of the night. I felt like I was abandoning her at night, but I had a son at home. When I would explain that, I would hear she doesn't know any better and you need to rest. But I knew, and if my son was in the hospital would I leave him alone at night? No, so why was everyone ok that I was leaving her alone at night.