What You Should Know If You Have a Preterm Baby

I think this is list is a great post to tuck in your mind just in case you pull the premie card. PLEASE add any insight, resources or suggestions to help other parents that may be going through this – I always appreciate it!

 

If you have just had a preterm baby, welcome.  Welcome to the exclusive club you never wanted to join.  I welcome you because you are my sister now.  Initiation is a bitch, but I promise you at the end of this you will find strength in yourself you never knew you had.  I am not going to tell you everything will be alright – that would only be dismissive of the totally legit worry you have.  This is hard, hard stuff.  But I can tell you that you can do this.  You are strong.


A few things I wish someone would have told me when I became the mother of a premature baby:


1.  

Take all the help you can get.  When people ask if they can help – refer them to the list below.

2.  

Be aware you might not make as much breast milk as a full term mommy for a variety of reasons (your body didn’t have as much time to start making milk, you may have had a traumatic birth, your placenta may not have come all the way out on its own, you were probably separated from your babe shortly after delivery, etc).  Lots of people in those first days will tell you it’s your job to make milk for the baby and then your body may not cooperate.  It is one of life’s cruel jokes and it’s not your fault!

3.  

Did you hear me when I said “it’s not your fault”.  I want to repeat this again – none of this is your fault.  There are drug addicts that have perfectly healthy full term babies so it is not your fault, or your body’s fault.  There are a million reasons you can go into premature labor and bad luck is one of them.  Treat yourself nicely and get help if like me you felt insanely guilty over something that you logically know wasn’t your fault.

4.  

On the other end of the spectrum you may not be feeling guilty.  You may be PISSED!  Pissed at your doctor, pissed at the hospital, pissed at your higher power, pissed at the freaking world.  Why did this happen to your baby!?!?!?  Feel free to get angry – just try and channel it in the right way.  Like try not to focus it ALL on the NICU nurses, they are good peeps and they work hard (that is not to say that you can’t complain to the Charge Nurse if it is warranted).

5.  

Don’t feel like every mom but you is with the baby 24/7.  They aren’t, or if they are they will pay for it later. Go home and get some sleep.  As the NICU Nurses love to say “You have the most expensive babysitters in the world” – use them!  You aren’t going to make it through this marathon if you run at full speed the whole time.  Pace yourself.

6.  

Don’t feel bad if you don’t think your baby is cute.  Seriously, it is hard sometimes to see past the tubes and wires to that cute little earthling underneath. They look different than you are expecting, see through skin and fur were off-putting to me at first and then I felt guilty for not thinking he was the cutest thing in the world (yeah I had a lot of guilt)

7.  

Take lots of pictures and journal – you are in shock -you may not remember anything later and may want to know what the heck just happened.

8.  

On that note – take whatever “memorabilia” you can from the hospital – their first pacifier, first diaper (not the ACTUAL first diaper because that is disgusting, but one of the leftovers when they move up a size), anything that will show their tiny size and will help get through to all the people that might want to visit when they go home just how fragile they are.

9.  

Decide whether you want to go public on social media or keep things private.  Even if you are keeping it just family and close friends you may want to designate one person to keep everyone updated so you aren’t constantly sending updates.  Sites like caringbridge.com can help you disseminate information or email and Facebook work as well.

10. 

NICU moms are more prone to Post Partum Depression (see guilt and anger above).  If you even think that this might be happening then go talk to someone.  Your OB, the NICU Social Worker, a therapist.  Just start talking.

11.

Make some premie parent friends.  No one can understand the emotional roller coaster like another parent of a premie.  Although, one word of caution – steer clear of the parent that tries to play the “my baby is getting better faster than your baby” or “my baby is sicker than your baby” game.  All our babies are in the NICU for a reason and we all need support in our lives. I found my tribe through the preemie baby board on inspire.com, handtohold.org and through the NICU social worker who introduced me to other premie parents.

Things to help a premie parent:

1.   There are a lot of people who will tell you what to say and not say to a premie parent and lots of people would disagree with those people but here is one that almost never fails:  “Congratulations, your baby is beautiful.  I am so sorry they are in the NICU.  How are you doing?”  And then listen.

2.   If you want to help, here are some ideas:

  • Send a care package with snacks, a water bottle, hand sanitizer, nice lotion, gift card for e-books or paper books
  • Send money for gas, restaurants or lodging if the person lives far away from the NICU so they can see their baby
  • Offer to babysit their other children, watch their dog, water plants, clean their house etc
  • Tell them that they and their baby are in your thoughts and/or prayers as appropriate.  Even though I am not religious, the idea of hundreds of people sending positive energy to our family felt amazing.
  • Offer to bring a meal over – bring it in a disposable container and preferably food that can be frozen and easily reheated. Or better yet, offer to organize all the people who want to help by using a site like www.takethemameal.com
  • Once baby is home, don’t be pushy about visiting. The smallest cold for an adult can be life threatening to a premie.  Trust me, they would love to see you and introduce you to the baby.  And they will as soon as they recover from the trauma and feel comfortable.  If they are ready for visitors, be prepared to sanitize yourself before going near that baby.

I am 14 months out from this life changing event and I still don’t have my head fully wrappe d around it.  I am sure I missed a ton of great resources and advice for a premie parent, so please feel free to share yours in the comments.  I am always looking for new ways to support my friends who are parents of premies.

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73 Comments

  • My wife and I have 2 premature kids and just finally had 1 full term. The doctors didn’t know why our first daughter came early (35 weeks) spending 1 week in the NICU. My wife became a little distant and just wanted to be left alone with her music. She kept asking why and she thought it was her fault. It took her 6 months to finally come back to being herself. I kept telling her that it wasn’t her fault. People kept asking well did she have the date right and why wasn’t your child full term. After we found out we were having our second child they were pretty sure that it would come early too. We did everything from prenatal and multivitamins to the pregnancy tea and staying off her feet but that didn’t help. Our second daughter came at 32 weeks. She was rushed right to children’s hospital for a few days then transported back to the hospital she was born at to spend the rest of her 4 weeks there. My wife was able to go home the next day after having her cause everything was perfect and our daughter wasn’t coming back to the hospital that day so she suggested we have some fun and to try not to think of our daughter being in Boston and not being able to see her for 2 days cause we had no way out there. Once we found out that we were expecting again her doctor said we had a 60% chance of another premie md recommended Makena. Our third daughter came 3 days before her due date. We did everything the way we did for our second with this one plus the shots weekly. Going from premie parents to full term was very different. It was very weird having both of them coming home at the same time. We have now have experience from both sides of childbirth. We couldn’t have said thank you enough to the NICU nurses for our first 2 daughters for looking after them while they stayed there. Now the oldest is 4 the middle is 3 and our newest one is 6 weeks.

  • Just wanted to say a quick thank you for this post and all the comments. You’ve really settled my anxiety about this. I’m currently pregnant with twins and am aware that a lot of multiples end up being born prem and spend some time on special baby units. Even though it’s not a certainty I feel like it’s better to be prepared for this eventuality. Thank you for making one soon-to-be-mummy a little bit less stressed xxx

  • I had my 27 weeker almost two years ago. I highly recommend the "My Preemie" app for anyone in the NICU. It was a lifesaver for us, and such a fun way to document everything.

    And just because you had a preemie doesn’t necessarily mean you’ll have another one. I had a 41 weeker just recently, thanks to progesterone injections! 🙂

    Great post, I enjoyed reading it, even though it’s been a while since I’ve been in the NICU.

  • I always worry that my preemie is not adequately developed and we’re going to discover some problem that will make her life more difficult. She’s currently 15 months and doing well (except for not saying any words at all so far). It took her seven months to laugh for the first time (compared to 3 months with my first). I constantly worry, even though there’s nothing to be done if there is an issue. And yes, I blame myself, even though I shouldn’t. This wasn’t helped by my midwife asking if I thought I overdid it in the hours before my water broke.

  • NICU mom to twins here!! Born at 31 weeks 1 day, mine were considered very large- 4 lbs, 7oz and 3 lbs, 12 oz.

    These were great points!! I want to add for twins- they may not come home the same day. Mine came home 2 days apart. But NICU won’t let you bring siblings up. Make sure you have help or a plan how to work it out.

    Also, be kind to the nurses! They are there to help.

    Great article!!

  • Great article. I wish I had read this 2 months ago when I had my preemie. I really needed to hear someone tell me that my low milk supply wasn’t my fault and that it was all ok.

  • Karleen adds: "one thing I would add is find a sister/mom/friend who you can delegate to send out email updates; it saves you from reliving whatever traumatic info you’re sharing 100 times or just saved you time from having to email pics to 100 people. You send it to them, they send it to the masses. I even had my sister fielding questions because I was so overwhelmed with Franklin’s, ehem, shenanigans in the early days. And because in between pumping, driving to the NICU, being in the NiCU, pumping, pumping and pumping, and stressing, and ugly crying all the way home from the NICU, there is not a lot of spare time!!"

  • I absolutely love this article, and I wish I would have found it prior to having a preemie. It’s funny how it never enters your mind that something like that can happen. Our baby was born at 34 weeks, and so much of this resonated with me – especially the feelings of guilt, wondering what I did to "cause" him to be born early, what could I have done differently, etc. Also, breastfeeding was a huge challenge because the baby was swept away and taken to NICU immediately after birth – I didn’t see him again for over 24 hours. The lactation consultants at our hospital were absolute trolls. Pumping went well for about 7 weeks, and then it didn’t. Another huge wave of guilt hit me for not being able to provide him with "the best."

    In the midst of having a baby born 6 weeks early, my husband relocated us out of state. He left me and our son at the hospital in NC, unpacked our house in GA and came back to NC to retrieve me and the baby. So our son’s first car ride home was nearly 3 hours. The stress of uprooting during such a critical time was beyond comprehension. I dealt with a lot of feelings of isolation and sadness in the first weeks. By nature, I have a hard time asking for help. I wish I would have done more of that.

    Thank you so much for sharing your experiences! It’s still great to know that we aren’t alone.

  • Thanks for your candid comments. I totally agree about just learning to accept help. Our son spent months in hospital when he first developed childhood epilepsy and I went from being a very self-contained person, to realising that sometimes you NEED to say yes, when people offer help. xx

  • Thank you all so much for the posts. This is perfect timing for me, I’m a first time mom currently in the hospital on bed rest with PPROM and anticipating induction at 34 weeks. Like most of you, I never expected this to happen to me or my baby and it’s been really tough wrapping my head around all the challenges the future will bring. I’m especially struggling with not being able to bring her home right away and being limited in how much time I’ll be able to spend with her. Again, I really appreciate all the thoughtful comments from you ladies who have been through this already, it helps tremendously.

  • I accidentally deleted this while tackling spam so I’m reposting. Sorry, Tami!!

    This was an amazing read! I’m a first time mom to a beautiful baby girl who is almost 3 weeks old and is still in the NICU. She was born at 28 weeks gestation, I was told I had a short cervix at 23 weeks and had gestational diabetes at 27 weeks and my water broke at 28 weeks she was born 3 days after my water broke. After 2 weeks in the NICU she developed an infection. Sometimes it is so hard to stay calm and not lash out at people. I try to be nice because I get that they don’t understand what it’s like. I feel like that is what makes it so hard though I have a hard time understanding what is going on sometimes some days are great some days are bad, but everyday is a battle for her and that is what most people don’t get. Then I have people asking when can she go home which just pisses me off and makes me want to cry at the same time because I have no idea when that will be. Emma Grace is what we named her and most days she keeps me strong, I just think of how brave and strong she is herself and tell myself "you need to stay strong for her" I hate to know that anyone else has to go through this sort of thing as well but am so glad we can find strength and courage in each other.

  • Thank you for this list. I am currently pregnant but my cousin is also pregnant and so far she is having many health difficulties. There is a really good chance her baby will be born before mine even though she is not as far along as me. I am currently looking for ways that I may help her out in any way that I can. She did ask me to donate breast milk which I am more than willing to do. But I really want to do more, anything really to help ease some of her stress. This article gave me great ideas. So again, Thank you!

  • I had preeclamsia. Number 3. And 10. Where the hardest the read. My daughter was at 36 weeks. Born 4lbs 10 oz 17 months ago and is now 21lbs 6 oz. she is in the 25% and everyday I have to remind myself that it’s not my fault.

  • My son was born at 31 weeks due to a placental abruption. He spent 4 weeks in the NICU. I learned quickly to stand up for your baby. I listened to the nurses and rest so I could be rested and healed when he was released. He is now an amazing 12 year old boy. He is very smart, kind, and big! No one can believe he was a preemie. While there were some rough days in the NICU there was some beautiful days too. I loved kangaroo time with him and I loved walking into the NICU and seeing the nurses holding him "just because". I always tell him we were lucky enough to get to meet him 9 weeks early. His

  • Mom of five year twin boys. Thank you for this article and jogging this mom’s memory of what felt like endless hours pumping, freezing and delivering to the NICU, coaching my boys to suck/swallow/and breathe, etc. My singleton (a girl) was 17mos when my multiple’s were born so the NICU nurses were my angels on Earth.

  • I am the mother of a premie born 27 years ago. He weighed 2 lb 7 oz. and was born at 28 wks. I was hospitalized 2 wks prior to his birth because of preterm labor. All of the information shared was just as true then. He reminded me of a plucked chicken at birth. (I felt horribly guilty for that thought.) He grew into a handsome man who married his high school sweetheart.

    With regard to postpartum depression: The stressors of having a preterm baby are tremendous. We have guilt, perhaps shame and feel physically exhausted. Our hormones are all over the place. We are sad, frustrated and alone. (Even in a room full of loving people, we may be the only one who is experiencing this loss) Talk to someone. Take care of yourself first both physically, mentally and emotionally.

    Lastly, I work with the Birth to Three/Early Intervention program in IL. Each state has this program. The program evaluates and works with children and families who have children at risk for developmental delays such as our children. It is a great resource and support for families. You may not need services and that’s wonderful. We aren’t looking to find more children in need, we are looking to be sure all children in need are cared for.

  • I didn’t have a preemie, but my 42-week, almost 9-pounder and I had an extremely traumatic birth that landed her in the NICU, and all these tips apply to term NICU babies too! Especially #3 and #5–I also struggled with intense feelings of guilt and thought I was never at the bedside enough, despite the fact that I had my own set of health problems from the birth and needed extra care too (and we were 1,000 miles away from home because the only NICU in Alaska is in Anchorage and we lived in Juneau at the time!). And I’ll echo what others have said: send congratulations to NICU parents! A baby’s birth is still a good thing even if it’s traumatic!

    Some other things we found helpful:
    -Really do take pictures. I did and found it extremely therapeutic both at the time and now, four years later. It helped the whole thing feel more "normal". We also read to our daughter at her bedside and that was nice.

    -Don’t be afraid to stand up for yourself as a parent–despite the traumatic way that you became one, you are still a parent and that comes with power and intuition. If you don’t think something’s right, tell a nurse. If the nurse dismisses you, tell the Charge Nurse. Just speak up–you still have power and even if you don’t know every little medical term, you still know your baby!

    -PTSD can take months to hit…it’s okay to go to a counselor months or years after you’re out of the fog of the birth. It took three months for me to realize that flashbacks 15 times a day weren’t normal, and it took a solid 3 years for me to process everything.

    -Stay close to your partner or spouse and grieve together. My husband and I processed the trauma and grief in entirely different–and entirely separate–ways, and we payed for it. We’re stronger than ever now, but adding marital trouble to trauma and new parenthood wasn’t the most fun combination.

    -For parents of term NICU babies: it’s legitimate that you’re there. Whether it’s because they’re too small or because they have a heart defect or because they have head trauma or whatever the reason, sick babies are sick babies. Just because yours isn’t so tiny doesn’t mean that they’re any less sick than the others and it doesn’t mean that you aren’t legitimate in being traumatized and scared and feeling all the same things as the preemie parents.

  • I didn’t see this mentioned. Beware the NICU two-step. Your baby takes two steps forward but one step back. Never look too far ahead because the NICU stay is a roller coaster.

    Mom of Rachel: 30 weeks, PPROM, placental abruption

  • If you do make as much milk as a term mama, donate, donate, donate! When my 24 weeker first started on breastmilk, I was keeping pace. But a couple of weeks later, he was still getting 10-15 ml at a time, and I was pumping around the clock, getting ounces at a time. There is a huge, huge need for preemie milk, and for the smallest and sickest micropreemies, breast milk can be the difference between life and death. I’m so glad, finally, one of his nurses mentioned donating, because my deep freeze was filling up.

    He needed several blood transfusions during the first month, and since I can’t donate blood, donating milk made me feel like I was at least doing something.

  • I was a single mom to my 30wk 4d preemie. She was born via emergency c-section due to a full placenta abruptio (completely separated placenta) and was 2lb 7oz at birth. She spent 5wk 5d in the NICU. She is now a healthy 10 year old, who does have some developmental issues.

    I wish that I had taken the developmental support as long as I could have. I stopped doing it because she had been doing really well and meeting her criteria for a while. However, after she started grade 1 we realized she had some issues, however, we can’t get the same support due to her age. It’s frustrating.

    Also, when your child is in the NICU, I swear by holding your child as much as possible. My daughter met all the "go home" criteria at 3 weeks and we were literally just waiting for her to hit 4lbs. She gained at least double over the other preemies almost everyday she was there. I had nurses reweighing her not believing she was gaining as much as she was. I credit it to her being as close to me as possible considering she should have still been inside me.

  • Mom of a 27 week 3 day preemie here (severe HELLP and pre-eclampsia). My son was born at 1 lb 9 oz and was in the NICU for 67 days. I second the idea of a journal and keeping one of the tiny diapers. You really will forget how tiny they are and you’ll marvel even more at their progress when you have physical reminders of what they have lived through. Having a preemie (at least a micropreemie) is an exercise in patience, because they really do grow at their own rate. It really helps me to pick up one of the tiny diapers or read our NICU journal when I am feeling frustrated because my almost 10 month old still doesn’t sit up (yes, he is developing fine and has no signs of delays beyond the expected preemie delays, but it is still frustrating for me). Also, make sure you investigate your state/county early intervention programs. If your baby needs some extra help, these programs will provide it for you.

  • Keep #10 in mind even after you come home. My ppd/ptsd did not start until after we had taken him home and settled into a routine. When they are still in the NICU it is easy to turn on the autopilot and not really process what is happening. I truly believe that if you have a preterm delivery they should schedule another postpartum check-up several weeks after the baby has come home.

  • Hi there,

    Thanks for this article it is nice ot hear the experiences of other preemie parents! With my first baby I went into spontaneous premature labour at 28 weeks. My son stayed in the NICU for 6 weeks, which were some of the hardest weeks of our lives. He is a perfectly healthy and happy baby boy now and I almost forget how fragile and sick he was when he was born.

    My best advice to add on to the article and other parents advice to is be your preemie’s advocate…make it your mission to know what is going on with his medical care, how much they are feeding him, what treatments they are suggesting and the pros and cons of these. We were lucky that our NICU had morning rounds at the hospital where the neonatoligst and nurses talked about the medical issues and care plans of all the infants one by one. My husband and I attended these every morning. As our drs and nurses changed we were the constant and we followed up on his medical issues. If we didn’t understand something we asked the drs, when he had tests, we made sure they followed up and got the results to us asap. Although we had no control over the situation I think knowing about all of the medical things going on with our son helped us feel a little bit of control and allowed us to make informed decisions about his healthcare. We also participated in his care as often as we could and used our time with him to read, play music, do kangaroo care. We put pictures of ourselves and our dog up and took pictures of him and momentoes of his milestones (his first bath in a tiny tub, when he was off breathing support for the first time, first time breastfeeding, his first soother once he was able to suck, when he reached 5lbs, and of course when we got to take him home from hospital.

    I am not sure if this will work for others but focusing on our sons care and being involved as much as possible in the care and being a mom and dad to him even though he was in hospital was how we got through the NICU. I did not talk to others much about this experience other than my husband but I think keeping focused on his care made for less time for the guilt, worry, grief, anger, and all the other emotions that come with this experience.

    Good luck to anyone going through this and all the best. This hard time will eventually pass!

  • Mother of a 31w 6d preemie here, thanks to an incompetant cervix (who comes up with this stuff?!). My son, who spent 5 weeks in the NICU, is now a healthy 30lb 2-year old. This is all great advice! I would second #5 about not being with your baby 24/7. That works for some people but not for others. I actually went pretty much immediately back to work so I could save up my maternity leave for when he came home, and then my husband and I would drive every afternoon to the NICU for an hour or so of kangaroo cuddle time. I had a few meltdowns where I couldn’t go to work and just went to the hospital all day, but it got kind of boring. Babies need to rest! I couldn’t just be with him all day.

    I would also add for new preemie moms and dads – if you are planning on breastfeeding and/or pumping, be prepared to start pumping pretty much around the clock as soon as the nurses let you. You’ll still be put on that newborn baby sleep schedule – wake up every 3 – 4 hours to feed, even though you don’t have a baby alongside you. I was exhausted, and got really frustrated when I didn’t have a baby to show for it. But, in the end, pumping 8 – 10 times/day was worth it for me because once he came home, he was a nursing champ.

    Once you have a preemie baby, too, you’ll be surprised at how many more of us are around you. People start coming out of the woodworks to tell you about their preemie son/daughter/self/friend/cousin. It happens all the time!

  • I would also suggest learning whether your NICU has access to a milk bank. I wish I had thought about this when my son was there. It’s wasn’t until I was home and thinking things through about our breastfeeding journey that I realized this would have been a great option for supplementing/topping up.

  • I’ve actually been avoiding coming to this site since having my preemie at 26 weeks last Easter. I had really enjoyed your page for the beginning part of my pregnancy but thought it would be too difficult to come back and see it now since I didn’t have a "normal" baby and it might upset me. I’ve worked through a lot of my anger and decided to pop back in today. Imagine my surprise to see this article pop up on my screen!!! Thank you for including preemies and preemie parents 🙂 It means a lot to not be left out.

  • My daughter was born at 25 weeks and spent 4.5 months in the NICU before coming home with oxygen and a feeding tube. She’s now 2, the cutest little pint-sized toddler. These are all great suggestions!

    I would add the following:
    * Write things down. I kept a journal during our entire NICU stay. I wrote down her weight every day, as well as notes from what the doctors shared with me, questions to ask, reminders of things to do or get on the rare occasion that I went shopping. This book was invaluable at the time, when I was not able to remember things due to the stress, and it’s become even more precious since we came home. I have looked back at it several times for questions that have come up from her ongoing therapies (When did we first notice her foot turning out? How long was she on CPAP before transitioning to the nasal cannula? What date was her first swallow study?) but it also makes the most incredible baby book – a true account of her first days.
    * Don’t worry about when they’ll "catch up". Preemies are on their own paths, and while it’s true that many "catch up by two", that phrase was not invented for micropreemies. These babies have had more medical interventions in a few months than most people have in a lifetime, and it’s not fair to expect them to meet regular milestones on top of that. Let them grow at their own pace.
    * Lean on people and ask for help. It’s hard to do in the best of times, but it’s especially important right now to not put on a strong face for other people. They are strong enough to deal with your real feelings, so please share them so you don’t have to bear them alone.

    And to people who want to help preemie parents, one of the first things I would say is tell them congratulations. I had a number of people who said "I’m sorry" to me at the announcement of the birth of my daughter. I understand what they were trying to convey, but that HURT. I had a baby. I wanted flowers and congratulations and acknowledgement, just like any other mother gets. I remember and appreciate everyone who gave me congratulations, even when it was an uncertain time – I felt like their optimism helped buoy me up.

  • I had a 32 weeker due to severe preeclampsia and HELLP syndrome and IUGR..(2lbs 14oz at birth, now almost 11 months old and over 20lbs.) The worst for me was when people would ask "when will he come home?!" All I wanted to yell was "when they say!" There’s no clear answer until like a day maybe 2 before they actually come home.. Instead ask "how is the baby doing?" We’d much rather focus on the positives then the fact that they’re still at the hospital and not at home yet..

    1. Talk to your spouse. A lot. I’ve had 2 preemies – 1 at 29 weeks and recently 1 at 34 weeks – and when the first was in NICU (6 weeks) I felt like no one would understand so I didn’t talk with anyone while suffering (we now know) from severe post partum anxiety. It was my wonderful husband who insisted that I speak with someone because I wasn’t myself. If he hadn’t, I may never have gotten help and done something awful to myself.
      2. Don’t. Google. Anything. It doesn’t help. Ever.
      3. Don’t feel silly if you have to ask the same question many times because you don’t remember the answer. You’re recovering from an incredibly traumatic, life-changing experience and your mind needs time to adjust – like weeks and months, not hours and days. That means you’ll forget stuff. The doctors and nurses understand.
      4. If you hospital has a family room, hang out there sometimes. Eat your meals there. It gives you a break from the beeping and the wires and gives you a chance to meet some of the other preemie parents in the hospital with you
      5. Join a Preemie Mom group. If you can’t find one, make one of your own. I found a couple of preemie moms in my general area and we simply agreed to get together every week. They often saved my sanity. We could discuss all the things that freaked us out or worried the hair off our heads about our preemies without having to deal with unconscious comparisons to term-babies. It was life-saving.
  • My best friend had a NICU baby, and her cousin made a NICU basket that was awesome. She framed pictures of mom and dad to keep by the baby at all times , and seeing these brought some level of comfort to mom and dad when they would look at baby through the window. She also made a super cute sign with her name that the nurses would hang next to her and it made things feel a but more personal. She also made a small journal for nurses to write in when the parents weren’t around. Nurses would jot down quick notes or thoughts (she slept so peaceful tonight! She’s so strong!) and these made the parents feel more connected even when they went home to rest. These are things that a parent can’t focus on during a traumatic time, but helped my girlfriend out a lot.

  • mom of a 32-week preemie here (pre-eclampsia; she’s now almost 2 & over thirty pounds). i wish i would have known how to talk to my daughter’s medical personnel. this might make me sound like an idiot, but i didn’t realize at first that the nurses rotated & that she would have a dozen or more nurses caring for her during her NICU stay. because of this, we didn’t get to know any of them well & none of them really got to know us. this made asking questions & getting clarification on confusing issues difficult, because the nurses seemed to have their standard boilerplate responses ready for the FAQs they got from parents, but we were often asking different questions. for example, there was a lot of confusion among the nursing staff when my daughter’s neonataologist gave us the go-ahead to try breastfeeding. my daughter was also cared for by a few temp nurses who, for example, wouldn’t let us hold her because they didn’t want her to "get too cold". they had never heard of kangaroo care. imagine having emergency surgery, giving birth two months early, having to leave your baby in a hospital 45 minutes from your town because your local hospital doesn’t have the facilities to care for such a premature infant, & then when you visit her, the idiot nurse won’t even let you hold her. (we did take that to the charge nurse, & should have complained about other things too, but i was on so many painkillers from the cesarean, i could barely walk, let alone pick a million battles over every little thing.)

    i think the number one thing i wish i’d known beforehand was what level of support my local NICU could provide. i didn’t know that i would have to give birth at a different hospital until five minutes before i was transferred. i was diagnosed with pre-eclampsia at 28 weeks. that’s early enough that it was almost a guarantee i’d be having a preemie. but no one told me that (i guess they didn’t want to scare me), & no one told me about NICU levels. my local hospital couldn’t care for babies born before 35 weeks. i was seeing my OB weekly after my pregnancy became high-risk, & no one ever told me this. it’s worth getting this information as soon as you get pregnant, really, even if you don’t end up needing it. had i known, i could have researched my options a little & maybe picked a hospital where we could have had a better NICU experience.

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