...but we wish it did! All of us have heard comments like, "Well, s/he's home now - isn't it great to have life back to normal?" Except anyone who's had a full term baby (or no baby at all!) have no idea how different it is being a preemie parent. Sure, their weights are up and they're starting to look normal by your standards but behind the scenes we're rushing them to more specialist appointments than most adults have had in their lifetimes, speaking in codes and doing math in mLs, and frequently still responding to alarms. Even after equipment is gone we're on a totally different timeline - a preemie alter-universe - so please respect that.

Here is what some of our moms wanted to share. Please feel free to add your thoughts on this topic in the comments below.

First of all I would say..once you're a NICU mom.. you're ALWAYS a NICU mom.. I talk in ML's (vs. oz's) when I'm talking about how much my baby eats; I always feel like I'm educating people on why she's smaller, why she eats differently, e...tc. etc. NICU moms are in a cult all their own.. :). I would ask for full-term baby mom's to consider our feelings when they talk about 'nesting' or 'getting the baby's room ready'..for most of us didn't get to do that. My baby wears oxygen for a little 'help' .. I'd like to explain to every one that looks at us cock-eyed.. that my baby won't be on O2 forever.. that she was actually off of it for 35+ days in the NICU then she had surgery for something ..and got back on it. Instead of throwing us the 'oh no poor baby' daggers.. ASK! OR.. MYOB! :)

I'm a new preemie mom (5 days, my twins were born Friday at 34w2d, daughter had IUGR so she is small for her gestation).

I'm already annoyed at how many people think they "can just come home". Also, the, "I want to see pictures". My kids had CPAPs on and you cannot even see their faces well. Another question asked immediately is, "when will they come home". Which of course we don't know. I don't know if I'm just hormonal but it's definitely annoying to me. I do have a medical background (not a nurse but work in cord blood donation and collect cord blood for use in transplants) and the funny thing is is some of the friends asking also do too. I would think they "would know".




Party planning, visitors, outings, etc. Especially in the 1st year... Keeping them "cooped up" is a life saver, not something that is harmful to them or a disservice. It's for their protection, building immunity is a fine line for these preemies.

I also wish I had the answers about "when" this will happen or that will happen or "why". Oh and another thing I'd add, that preemies to qualify and "need" certain things that FT babies don't (such as therapy, and in a lot of cases additional health benefits), we aren't "taking advantage" of things, its because our children actually NEED these.



Being a preemie parent makes it very complicated to come up with an answer to "How old is your baby?"



The whole sickness thing. Yes, they look big and healthy, but their lungs are not the same as if they were born term. Therefore, I still need to be diligent about something as minor as a cold, even if she weighs 12 lbs.



I wish I could explain how difficult it is to remain on lockdown through RSV season and not be able to take my DD to baby yoga, mommy and me groups, or just to go go out to Target, the grocery store or out for dinner with my husband and DD. Even though my DD is growing like a weed and is 4 months old now, we still can't take her out due to the RSV risk. It is a pain in the a**** when I have to ask 'are you healthy' whenever I want to go to my mom's house for a visit. Also, PTSD from having a preemie is real and you don't just 'get over it' once you take you baby home from the hospital - the mental effects of having a preemie in the NICU don't go away once you come home from the hospital; I still have a hard time hearing about full-term baby mom complaints and the inaccuracies presented on Grey's Anatomy regarding preemies.


My DD was born at 34 weeks. She spent a week in the NICU, and a typical 34 weeker spends more time there, but she did very well, so she was able to be released at 35 weeks. It has been really hard to deal with parents of fullterm babies...they think that things will work for a preemie just like they worked for their full termer. It just isn't so. I am trying desperately to BF, but with LO being in the NICU, even with pumping, my supply really stinks. LO also got formula in the NICU, so I have had to battle with nipple confusion. A close friend of mine keeps offering her breast feeding advice, which is so nice, but has no correlation to my child. Her child was able to be with her in the hospital and be released home with her. we have an uphill battle due to the NICU stay. Other moms also think that LO is just like their baby, just a little smaller. I have found that just like advice given when I was pregnant, I just have to take it in stride and remember to focus on me and my LO. Only I know what's best for her, and even if it is difficult to hear the advice bc it is frustrating when others don't understand our situation, I am trying to do the best I can!!!

I think it's hard for FT moms to understand how our whole first year (and more) are so different. Especially for those of us who are quarentined. Constant vigilance about germs, countless visits to specialists, and not doing "normal" things... like playgroups. Also, preemie moms expect and even welcome therapy. We watch closely for any sign of delay and overanalyze it to death. We live in a constant balance of anxiety and justified worry. And birthdays are both cause for celebration as well as a day to remember trauma.

The restricting visitors/being overprotective/staying home during rsv season...a lot of family members and friends just didn't get it. We got a lot of slack from some family members in Pittsburgh when we didn't make the 5 hour trip to visit... for Christmas this year. My cousin said these words on Christmas eve to the rest of my family "my friend has twins and she doesn't keep them cooped up in the house all of the time. I can't believe they didn't even come for christmas". There is a reason the twins get rsv shots every month, why we avoid public places other than the doctors office, why we won't let anyone in the house if they've been around someone who's been sick, why we have hand sanitizer in every room and make sure everyone uses it before touching the kids. It's not to be mean, to be hermits, or to be "crazy" parents. Even though they look like "normal" babies, their immune systems and lungs aren't just yet. I wish people could get this.

One more: not all preemies are equal. Your friend's 2lber who was on breathing treatments for 4weeks probably needs more "lockdown" than my 2lber who wasn't on any breathing treatments after the first few hours. Trust that both your friend and I have discussed post nicu care with our team of specialists and are following accordingly.

I am just starting my nicu journey and am already annoyed mothers of full term babies. Nora was due the day after mothers day, and one of my sisters were up at the nicu yesterday and I said something about if she is discharged before mothe...rs day that I guess my first mothers day would be a quiet one. And she didn't understand why if she was discharged she couldn't be with our family that day... I tried nicely to explain that her being a premie is a whole different world than my sisters born at full term...yeah she still didn't get it.

(This was written several months ago as part of our personal NICU blog for friends and family but I think its appropriate to share again here.)

This is one of the first questions we get when people see Cora. Of course we don't get out much so this comes mostly from people at the doctors' office or people we meet on our nightly walks in the neighborhood.

The answer to "how old" is a tricky one. For at least the first year of her life, Cora has two ages. Her actual age-the amount of time that has passed since her birthday. And her adjusted age-the amount of time that has passed since her due date. For most things she is caught in between the two ages.

In some ways, Cora is a 3 month old baby. She's been eating, breathing, experiencing the world for that long. As parents, we've had all that time to get to know her and learn to interpret her cues. But in most ways, Cora's development is tied to her adjusted age. She will hit most major milestones based on her gestational age not her real age. This means she will be about 3 months behind her peers on a lot of developmental issues. Her pediatrician watches her growth on a special preemie chart (Cora is almost in the 50th percentile!) rather than one based on her age since she wouldn't even be on the chart at all.


To help Cora catch up, she is enrolled in a program called Early Childhood Development. ECI is a team of specialists who work with low birth weight babies for the first three years of their lives to help them catch up to their peers. Right now Cora has an Occupational Therapist and a Nutritionist who visit our house regularly. Her OT comes every other week and works on developing muscle tone and cognitive behaviors such as making eye contact. The nutritionist comes every other month to help make sure Cora is gaining weight and growing appropriately. Both give us homework after every visit so that we can work with her daily.

So we have a 3-month-old-newborn who will do things at her own pace. Right now she is working on head and neck control, grasping things with her hands, and focusing on toys with her eyes. We've seen her make big leaps in each of these areas in the last week and celebrate every tiny milestone, just as we have since her birthday (real or adjusted!).

Moms frequently wonder if other babies make little (or big!) grunting noises. Yes! Term make these noises, too, but preemies make them for much longer. They will go away eventually - though not for a couple of months. Try to capture the moment on video so you won't forget those squeaks and squawks.

I waited 50 days to have this picture taken!

This is, of course, the biggest question on our minds while LO is in NICU. We dream about it all day and night. We walk around our homes getting things ready, or tucking them in corners “just in case” as I chose to do. We ask our doctors and nurses questions to get clues.

What can I do to help?

When someone you care about has a premature baby it’s natural to want to help out. Often their baby came unexpectedly so the new parents may not know how to answer that question. Chances are they are feeling overwhelmed and scared. The NICU veterans on TB gathered together a list of ideas and suggestions to give you direction. Perhaps you are the new preemie mom – here are some ideas for when people ask. During this time you should be concentrating on your LO and your SO (and don’t forget yourself!). When someone wants to help, allow them. You won’t regret it!
















Things to say/not to say:

Instead of, "Oh, he's so tiny!" try "Oh, what a beautiful baby!" NICU is intimidating – tune it all out. Your friend needs you to be strong.

Please don’t ask, "So does this mean he'll have health problems later on?"



One of our least favorite lines: "When can I come visit you and bring my 2 germy toddlers who are sick? I really want to see the baby!" You get the point! Instead say, "I'd love to visit when you are up for it. I'll be sure to leave my kids at home and make sure my hands are washed."

Compliment them on their adorable babies! Tell them how great they look in all those FB pictures. If you don’t see many give some gentle encouragement. Maybe she’s worried she’ll frighten others.

Weeks later don't admit that you were worried their baby was going to have the "alien preemie look" and how glad you were they wound up looking "normal."

Tell us about YOU – we want to be distracted!

However not all moms do. Again, tread lightly and assess her mood. One mom wrote, “Don’t assume since my baby is in the NICU that means I want to get out and have coffee and girl time. All I want to do is be with my baby. Offer to bring coffee to me, but don't think this is a great time to catch up after weeks of bedrest since I "don't have to worry about bringing the baby out."

Remember that it's not just mom going through this, it's DH too. Please, please remember dad!  Volunteer to take on some of his "man tasks" like mowing the lawn; he’s scared and overwhelmed, too.

Is she crafty? Bring supplies! or maybe she’d like a crochet lesson from you!



We hope this helps you help them or you help yourselves…………..you know what I mean! NICU is an abyss. It’s hard. It’s tiring. It will end. It doesn’t feel like it will, but it does, and you’ll even have some fond memories. Remember to save your baby’s first diaper! You’ll be amazed when you see it down the line.

Love,

The Preemie Moms