Advice for Current NICU Parents From Mothers of Multiples

Introduction

If you are a NICU parent and are in the midst of your baby’s NICU journey, you must listen to this episode. We collected some great advice, tips, suggestions, and encouragement from former NICU Moms that you must hear! The tips featured mostly came from mothers of multiples, but any NICU parent will benefit from what they have to share! Whether you are a seasoned NICU parent or brand new to the NICU, you will want to listen to what those that have gone before you have to share! 

I believe we can all learn a great deal from those who have previously experienced a situation prior to us. For this episode, I asked for words of wisdom from our parents of multiples who previously had babies in the NICU. As I have said before, no one quite understands the NICU experience unless they have endured it themselves, and it especially applies to those parents who have had more than one infant in the NICU at the same time!

The idea for this episode originally came from an Instagram post. My friend had just started her family’s NICU journey with their 30 week twins. I was quickly reminded how supportive the NICU community can be when they were so willing to share their advice, support, and encouragement with other families. It continues to show me what an amazing community I am proud to be a part of. Once all of their bits of advice came rolling in, I felt that I needed to share it to help other NICU parents who may not follow me on Instagram. If you do not yet, you can find us as @empoweringnicuparents on Instagram or join our group HERE on Facebook. 

I had previously put together my personal top tips for NICU parents which is a great adjunctive piece for this episode and you can get your free copy HERE!

Do not be deterred from listening if you are not a parent of multiples, I promise that you will gain some value and hear great suggestions for every NICU parent!

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Episode 20

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What advice would you give to a new NICU Mama of twins?

Here are the responses I received.

Katie @thesouthernmamasaurus

“Try to get their rooms next to each other or their isolettes in the same room. It was a game changer for us! Pump as much as possible if you want to breastfeed – it’s so easy for supply to go down since you aren’t able to be with your children all of the time. And if she needs to switch to formula or supplement with formula, don’t beat herself up. Take it one day at a time, cry when you need to. There should be a social worker assigned to the NICU – get to know them and what tips/insight they can share! ❤️”

I love all of these words of wisdom!  I know in our NICU we always try to position twins or multiples next to each other. The parents already feel torn that they have to split their time between the two, so it becomes much more difficult if the babies are far apart on top of it! And, once they are stable and able to be placed skin-to-skin or held, it enables the possibility of Mom and Dad being able to hold them together and at the same time. 

I absolutely agree with the pumping! Yes, it does become a full-time job, but it is so worth it! Between the stress, lack of sleep, and recovery from the delivery, we as NICU Mamas typically struggle a bit more with keeping our milk supply up. But, at the same time, if you feel that the stress of pumping and supplying milk for your little ones is becoming more stressful than beneficial, talk to your nurses or lactation consultant. If you decide to stop pumping, do not beat yourself up. The maternal guilt we all endure is already there, so do not add more to it! 

And yes, you must take the NICU days one day at a time, as much as you want to foresee into the future and try to predict the outcome, this is not an experience where you can really do that. It will actually become even more overwhelming for you. Celebrate the daily victories and mourn the set-backs because there will be some. 

The social worker as she mentioned is an amazing resource to your family. They will help to point out resources for you, offer information on insurance and benefits as well as accommodations and financial assistance if needed. 

Julia @ot_mama_of_twins

“I had my twin boys at 30 weeks! So much advice to give! I’d say take it day by day, take care of yourself (eat, drink water, sleep if you can). Have a journal for each baby, take notes, leave it at bedside so nurses can leave cute notes about what they did while you were out. Ask to have their isolettes next to each other (if you aren’t in a private room). Take a lot of videos and pictures, ask if you can stagger hands on time so when you visit to help with both babies. Don’t feel guilty if you end up with one baby more than the other- once you’re home (which will simultaneously feel like Eons- and fly by) they will get equal amount of mama time. When you get a nurse that you feel super comfortable with- ask if your NICU does primaries. (That’s my #1 NICU advice- as a 3x NICU mom it makes a big difference to have the same couple of nurses that know your babies and know you super well vs being shuffled between a new nurse every day x 2 months).”

Again, such great advice here! A journal for your NICU baby is a must! I believe parents should have one to write in for each baby to document each baby’s progress and plan of care for the day. Also, consider an additional journey for parents to write their feelings and experiences throughout the NICU journey. 

With the pictures and videos, I definitely captured a lot of moments. I ensured that I had at least one photo of William every day! Sadly, I realized that in the early weeks once we brought him home, I didn’t take nearly as many videos and pictures – so capture all of those moments while your babies are in the NICU and at home!

I appreciate the advice about staggering their care times so you can help with two-person cares, diaper changes, and feedings and not feel as though you’re missing out on the other infant entirely. Do not hesitate to make simple requests like this to the NICU care team. Remember, these are your babies!

Primary care nurses are an essential component of family-centered care in my opinion. To have a couple of nurses who know you and your babies well is extremely important and beneficial. Some units do not offer primary care nurses, but it is definitely something you should ask about. 

Sara Ward @sarah_immonen_ward_author

“My twins were born at 28 weeks. I agree to take one day at a time and take care of yourself. Try not to stress about producing enough milk if she chooses to breastfeed or pump. That’s a tough one and pumping was easier for me because of their feeding tubes and being able to physically count the amount they ate at each feeding. The mom guilt is REAL especially when you can hold one but not the other and if/when one comes home first. Remember they are individuals and will hit milestones at their own pace. Try not to worry when one is a few weeks behind the other. Twice the worries but twice the love in return! Hang in there mama!”


Sarah brings up some great points here. I briefly mentioned the maternal guilt earlier, but yes, be cognizant of it and do not let it get the best of you. I can only speak on the maternal guilt with one NICU baby, but as she said, with twins, you will be torn regarding holding one versus the other or spending more time with one especially if one baby comes home before the other one. Make sure you show yourself some grace and do not add any stress to your plate with additional maternal guilt.

I also love the point she made about each twin being individuals – because they absolutely are! My niece and nephew were twins born at 36 weeks and I’ll never forget the first thing the Neonatologist said to my brother and sister-in-law was, don’t compare, don’t compare, don’t compare. And that is the mantra that needs to start from their birth and all throughout their years ahead! Although they share DNA and shared a womb, they are very different! When they hit each of their milestones, their personalities, and their NICU journey will all be different! 

Jeanette Rabsatt @Jrabsatt624

“My twins were born at 24 weeks and were in the NICU for 114 and 128 days and I also had 2 other kids at home. My husband and I basically split the kids up, he took on the 2 at home and I was with the twins in the NICU while pumping etc. The best advice I could give is to take it one day at a time and just know things will get better. Prayer and worship music when doubts or negativity arises also helped. This too shall pass 🙏”

Jeanette brings up an important struggle that I know many NICU parents endure – struggling with children at home and with infants in the NICU. Whether you have one baby in the NICU or multiples, having other children at home adds another element of stress. No matter where you physically are, you will feel as though you should also be at the other place with your other children.

It is not a challenge that can be easily fixed or that I can give advice on. Every family and their unique dynamics are different and with your significant other and additional support system, you will need to discover a solution that works for your family. And just know that what works initially may need some tweaking or adjusting as time moves on. But again, be gentle on yourself and your significant other.

My step-daughter lived with us half of the time while William was in the NICU, plus my husband had to keep working, and we lived about 50 miles away from the NICU. My brother and sister-in-law let me stay with them since they lived in the same town as William’s NICU so I could be closer to him. I was at the NICU day in and day out with William while my husband tried to keep things afloat at home. But, I would be remiss if I didn’t mention the struggles we endured as a couple and a family. I wanted my husband at the NICU more and my husband wanted me home more. We had to openly discuss our struggles, tweak our plan as the days progressed, and lean on several people as well. It takes a village my friends! 

She also reiterates the need to take the NICU experience one day at a time! And yes, we may all have different beliefs, but whatever it is that brings you peace, whether it is prayer, meditation, and/or music, utilize it! I heavily relied on prayers and my faith during William’s NICU journey. I feel as though I personally would not have made it through without my faith. Find something that helps you through each day and practice it. It will help!

Kristie Miller @hotmessburnette

“I’m not a twin NICU mama, but I was a nicu mama – I recommend to journal journal everyday! All your thoughts, what you did that day.. and that journal will be your child’s story and they will one day cherish it.”

Yes, Kristie! I could not agree more! Journaling is not only great to keep information straight, but also I find that writing is good for the soul! I personally find it very therapeutic to write down what I’m grateful for, or my thoughts, feelings, and even frustrations. 

A NICU journal for the babies and parents is so important to me and I believe so essential to the NICU journey, we have a surprise I have been working on and I hope to get out to the NICU community in the very near future! Stay tuned!

James and Elsie’s Mom @oldmcdonaldtwins

“My twins were born at 29 weeks. We had 3 months in NICU/SCN. My best advice is to take one day at a time and to look yourself.” 

Do you all see a common theme here? The NICU journey can easily become overwhelming, so not only taking it day-by-day is essential but self-care is so important. I can personally speak to not every wanting to leave my son’s side in the NICU. I barely stepped out for lunch and my husband had to drag me out for dinner as well. But self-care inclusing drinking plenty of water, getting appropriate rest, eating well, as well as taking walks, having a drink (yes, Ladies, you can have a drink!), or going to dinner with friends or family – whatever it is that you enjoy, you should continue to do. Take care of yourself and your mental well-being. If you are not physically or mentally healthy, you are not beneficial to your growing babies!

Daniel and Cillian’s Mom @our_twins_journey

“Try to have cares at the same time for each baby and do tandem cuddles, so each baby gets a cuddle but mum can get a break too. Even if it’s a cup of tea or coffee in the parents room, or a walk around outside. It’s OK if one twin doesn’t get a cuddle, you also need to be there for your older child/children. Taking a day off is a must. I tag teamed with my partner which worked well with our daughter when our twins were in the NICU. I created two photo albums on my phone, one for each twin as they looked the same for the first few weeks with their CPAP masks, so I put the photos into the correct album straight away, as my brain was mush 🙈🤣”

Yes, my brain was mush as well! With everything going on, I feel that so many NICU Mamas feel that way! Again, we are reminded of the importance of self care and taking time for yourself including an intermittent day off. I also love the idea of making separate photo albums on your phone for each baby! I can completely see how it would be difficult to identify which baby is which – especially after time passes!

Every Mom @imeverymom

“Get all the resources you can. Meet with your RN social worker, Psychiatrist (if offered), and make connections with the nurses. Ask questions if you don’t now. There’s no such thing as a dumb question when it comes to your twins health!”

She mentions using the resources available to you. As we previously mentioned how essential the social worker is, but yes, some NICUs do offer a Psychiatrist or NICU Psychologist. They are there to help families cope with the struggles endured in the NICU. They also make it a priority to monitor maternal mental well-being which is so essential! Anese Barnett and I discussed Maternal Mental Health in the NICU in our podcast: Supporting Maternal Mental Health in the NICU – Are We Doing Enough? Part I and Part II. I strongly recommend that you consider listening to it to hear how feelings you may be experiencing are not atypical. But, most importantly, she offers suggestions and recommendations on ways to cope.

Every Mom also brings up a great point to not ever think any question you have regarding your NICU infant is a dumb question. Even for medically educated parents, the NICU is an entirely different world! Do not ever hesitate to ask questions regarding their care and progress. You will not be judged by the questions you ask, so ask away! 

@me2books

“My twins were born at 28 weeks. Try to bond with each baby individually, but also take any opportunity to let them bond with each other through simultaneous kangaroo care. Prepare yourself because they probably won’t go home at the same time.”

She brings up a great point about bonding with each twin separately as well as allowing them to bond with each other which I love!

Skylar and Zoey’s Mom @mcbridetwingirls

“Don’t feel guilty for spending time away from the NICU when you need to. Those babies are in the hands of angels. NICU nurses are angels on Earth. Spend time healing and taking care of your own body so you’re at your best when they come home! You can’t turn off the mental exhaustion that comes with worry but you can take care of your physical being by resting.”

The points she brings up are so spot on! And she’s correct, the NICU nurses caring for your babies are well-trained and absolute angels! It takes a special nurse to be a NICU nurse. You will in time develop more trust with the NICU staff each time you have to leave your baby, not only because you will eventually start to develop trust, but honestly because you have to! 

And just as she mentions, you also need to heal and care for yourself so you are at your very best once your babies do come home! And I love her last statement that you cannot turn off the mental exhaustion that goes hand-in-hand with the worry, but you can take care of your physical well-being! The NICU experience is one that you have minimal control over, but one thing you can actually control is your physical health, so make it a top priority! 

Yesenia @yessiixo

“My twin girls were 30 weekers and have been home for over a month. I was hospitalized one month before their birth. Things I wish I did were dress them up at the NICU more, take in their blankets and have photo shoots. I will never get back their first 2.5 months of their lives that they spent in the NICU to do all the newborn stuff that I wish I did. Also, ask the nurses as many questions as possible for advice before discharge. It is a long hard road especially when splitting your time but it gets better ❤️”


Yesenia brings up a great point to not miss those early moments and photo opportunities just because your baby or babies are in the NICU. Many times, parents are so ridden by their anxiety, worry, and even depression that before they know it, many memories and opportunities have passed them by. Even though it is not the most ideal situation or as you had envisioned it would be, but you must seize and capture all of your baby’s moments even when they are in the NICU.  

She also reminds parents how important it is to ask the nurses questions especially as your baby or babies are nearing discharge. There will be alot of information thrown at you, so utilize your resources and the opportunity you have in the weeks building up to their discharge to ask the nurses and NICU care team questions. 

@laikynslife

“Ask questions and ask for rationales for treatment. Even though I don’t specialize in neonates.. I am a nurse practitioner and I understood most of what was going on…I can’t imagine going through the process without any medical knowledge…I would literally be in a twilight zone…be there on rounds EVERYDAY. If you notice something that’s out of the normal behavior of your babies..let the team know… they see what’s on paper…you are there everyday learning their mannerisms and personalities.”

Again, some great advice! Not only should you ask questions, but you as the parents should understand the rationale for why your infants are receiving treatments and/or medications while they are in the NICU. 

I love how she mentions being present on care rounds everyday as well and I could not agree more! Being present for rounds is essential and helps you to be an active member of your baby’s care team! It is the best time to hear the plan of care for your babies and ask questions accordingly. 

And she is also exactly right, that you as parents know your babies the very best so if you notice that your infant is acting up or something is a little off, make sure you bring it to a member of the NICU care team’s attention. You are your baby’s biggest advocate so do not be afraid to bring up your concerns.

Courtney Hoff with @liamlinusco

“My twins were born in 2018 at 35 weeks. One was in the NICU 3 weeks and the other for almost 5 months. I would really get to know your nurses and try to talk to the head nurse so your baby can stick with the same nurse or nurses for each shift. It’s not always possible but it’s really nice when you have that rapport.” 

Courtney reiterates the importance of primary nursing, so once your infants are admitted to the NICU, this should be one of your first inquiries. 

Racheal Erickson @micropreemiemom

“My twins were 23 weekers and we spent a long 8 and 5 month journey in the NICU. Remember they are their own unique individuals. Keep breathing and keep a notebook to ask questions. Also I always took pictures/videos so if something seemed odd I could show the video/picture to better explain my question. I walked in with little medical knowledge and walked out a medical mom. Also just breathe and one day the NICU will be a thing of the past.“

Racheal as a Mama of twin 23 weekers added some great advice!. In addition to some of the tips we’ve heard from others, she recommended taking pictures or videos of her children if there was something you’re concerned about so you can actually show the NICU care team which is a great idea.

Kate @katers723

“I had 31 week twins. Write in a journal and take pictures. Get in the pictures. Ask to be involved with cares, and do skin to skin as much as possible (and it’s okay to do together! My favorite pic of us ever is the first skin to skin with both babies). YOU are an important member of your babies’ team (if not THE most important) – Ask questions, then ask more questions, and keep asking until you 100% understand. 2 steps forward, 1 step back. Don’t focus everything on discharge. Celebrate all of the milestones – first bath, first bottle, open crib – they’re BIG deals for preemies! You got this mama ❤️”

Kate, thank you for some great words of wisdom! She reiterated the importance of you as parents being the most integral member of your baby’s care team. As well as the importance of asking questions, then asking them again! And, sadly she’s correct. In your baby’s NICU journey, you will often take 2 steps forward and one step back. It is a roller coaster and one with many peaks and valleys. I love how she pointed out that NICU parents should celebrate all of the milestones while they are in the NICU and not just on their discharge. This is part of your baby’s journey and story, cherish it with all of their successes! 

I learned this as well with our son’s time in the NICU. And ironically, there really weren’t NICU Milestone Cards available 7 years ago like there are now! It is part of the reason we at Empowering NICU Parents created our own NICU Milestone Cards and Baby’s 1st Holiday Cards, so you as parents can celebrate every single milestone and holiday with your little one even while they are in the NICU!

Simone Nilsson @simones.highway

“My twin boys were born at 24 weeks gestation. My youngest died at 38 days 💔 but i would recommend having two different photo albums (one for each child) in your Phone and sort the photos asap 😅❤️”

Simone, I am so sorry to hear about your loss. Prayers for your family, but we appreciate your suggestion of the two different photo albums to keep your babies separate.

Chelsea Moore @chelcmoorr

“Keep a note book. Take notes of questions for the doctor for each baby. They will have their own NICU journey so it’s helpful to have a notebook so you’re not trying to remember everything.”

Chelsea reiterates the importance of keeping a notebook or journal for each infant and having questions ready for daily rounds when the team comes around. The separate notebook is also important for insurance purposes so if there is a mix up with your babies, you can help to straighten it out! 

Angelina Castleberry @angelinacastleberry

“Be present. Wherever you are… be there. With this baby, that baby or kids at home. Be in that moment. (All listed advice are amazing) Also, each baby is different, mine developed very differently. But we allowed them to learn from each other and with each other. My son learned to eat watching his twin eat. (He had a gtube and took his first bite of food at 14 months.)”

Angelina brings up a great point that I love – try to be present – wherever you are. Yes, your mind may be spinning and your thoughts may be with either your babies in the NICU or your other little ones at home, but try and be present and in the moment of where you are and focus on whomever you’re with at that time.

Kryss @authentic_kryssx3

“I had 23 weeker Mono-di twin boys. Be mentally prepared for the rollercoaster and that just because they are twins, remember they are individual babies and will be on their own paths. And to have faith. Also ask questions and when you don’t know it gain clarity where you can!”

Thank you Kryss. Yes, try to remember that they are individual babies and will be on their own journey and path. And just as we previously mentioned, have faith and to always ask questions.

Lisa Bridgeman @lisaabridgeman

“My twins were born at 33 weeks, they just celebrated their 26th birthday….where does the time go?…. Take pictures!! We took a bunch, but still wish we had more. Rest, pray, relax and Thank God for each and every day!!”

Leah Jackson @leahjackson428

“Try hard not to compare the progress of babies. They are twins but also individuals!”

Closing

I cannot thank all of these women enough for sharing their advice and suggestions for other NICU parents, especially those with twins or multiples. Although every NICU journey is different, I think it’s incredibly important to listen to and hear suggestions from those who have been through a similar experience before us.

I hope at least one bit of advice provided here will help you in some way. But most importantly, I hope that you do not feel alone. The NICU journey is incredibly difficult and sometimes a very long one. Do not try to get through it alone. Lean on your friends and family. Or ask the NICU care team or social worker if there is a unit support group or a parent liaison to assist you through the journey. Additionally, there are people and groups like us and many more out there who are here to help. We are here to empower, educate and support you through your baby’s NICU journey so that you do not feel alone. 

I only wish that I had known more about the people and groups within this NICU community when my son was in the NICU.

As always, if there is someone you know that would benefit from hearing this podcast, please consider sharing it with them. 

Remember, grab your free copy of my top tips for any NICU Parent who is enduring the NICU journey!

Remember, once empowered with knowledge, you have the ability to change the course. 

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