The Untold NICU Stories of 14 Twin Moms
One of the smartest things you can do as a twin mom is lean into this community when you need it the most. Inevitably, you’re going to have hard times where you feel confused, helpless, alone, or even scared. When people think of twins, oftentimes a few things come to mind: adorably matching outfits, a strong sibling bond, and lots and LOTS of diapers. But, what also comes to mind is hard work, the risk for prematurity, and possible NICU time.
Being a parent of multiples is a job that requires a strong person with a strong conviction to get through each phase. One of those phases that MANY twin parents go through after giving birth is the Neonatal Intensive Care Unit (NICU). This is often an unfamiliar place for many new parents, full of alarm and uncertainty. These are the moments to call on your fellow moms of multiples for encouragement and wisdom. You WILL make it through this!
Although my own twins were born full term and never required any time in the NICU, I still wanted to find a way to offer support to the countless mothers that do go through this experience. Therefore, I’ve called on 14 twin moms to share their NICU experiences and to offer their words of wisdom. Read this, keep this, and turn back to this when you’re in a hard moment and need some encouragement. Thank you to all the AMAZING moms that shared their journeys in order to help others!
NICU story #1, written by: @m_jarnecke
“I didn’t immediately bond with my NICU baby. In fact, it heartbreakingly took a few months to bond with him. I delivered at 38 weeks, 3 days and although my daughter and son were both healthy weights, my son had an air pocket trapped outside his lung that required a very short NICU stay. I met him briefly as he was transported from the STAB unit to the NICU, but I didn’t see him again until another day had passed. My daughter, on the other hand, was almost immediately placed in my arms.
Because of this, I instantly bonded with her - I was besotted with her. By the time all of us were home, my son felt like an intruder to my happy family of three (me, husband, and daughter). I felt so guilty. I mentioned to my friends how hard it was to bond with my son, but I was too scared to divulge that he felt like an intruder to me. What would people think of me? Luckily, I found a local postpartum support group and was able to openly discuss my struggles with them.
It was liberating to be able to have a forum that was free from judgment. It gave me the courage to discuss my struggles with my husband, and he gave our son the extra love that he needed when I was incapable of doing so. Slowly, my bond with my son grew. I’m happy to report that at 6 months, this is all just a distant memory. It’s hard to remember that there was a time that he didn’t feel like an integral part of our family. Moms and dads - please know that it’s okay if you don’t feel a connection with one or both of your babies. It doesn’t make you abnormal or a monster. Reach out for help in a capacity that feels right for you. It may take weeks or months, but with time, it will get better.”
“You may not immediately bond with your NICU baby, but things will get better.”
NICU story #2, written by: g3jennieralston
“My twin boys spent 3 months in the NICU after being born at 30 weeks 4 days. My water broke at 19 weeks. Both boys were intubated immediately upon delivery and whisked away to the NICU. I didn’t get to see them for about 4 hours, and it was 9 days before I could hold a baby. They spent almost 2 weeks on a ventilator. Then, they were on oxygen for about a month and a half after. Both boys had surgery for double hernias (super common in preemie boys), and multiple blood transfusions over the course of their stay. The last 2 weeks in the NICU were the hardest for me because I felt like everyone around us was going home except us. The boys were working on bottle feeding and we had to be their biggest advocates. The whole time, we were splitting our attention between the twins in the NICU and our toddler at home. And, I was pumping around the clock! We constantly tried to remind ourselves that in the grand scheme of life, our NICU days would be just a blip on the radar in hindsight. The twins are now 2 and thriving! We’re actually really looking forward to attending a NICU reunion at the end of the year and catching up with the doctors and nurses who showed us so much love over those 3 months.”
“I would encourage any new NICU moms to ask lots of questions, trust your gut and remember that you are your baby’s best advocate. Ask for and accept all the help you can get! It truly takes a village.”
NICU story #3, written by: _shelbiebrown
“At 34 weeks pregnant, I was told my daughter’s intrauterine growth restriction (IUGR) had reached the point of her needing to come out so that we could better help her grow outside the womb. Even though my son was growing fine, it’s a two for one deal with twins. So, he was along for the ride, too. Since they were going to be so early, we had no idea what to expect in regards to how they would do after delivery.
One thing we knew for sure, was that they’d be headed to the NICU for at least a week (our hospital requires babies to reach 35 weeks minimum before they can be sent home). Much to our surprise, the babies came out breathing on their own, eating on their own, and just all-around flourishing. Although the babies were doing well, we had an overwhelming amount of guilt every time we left them. We quickly learned that with preemies and the NICU, things can change in an instant. During our visits, we noticed the monitors, but didn’t pay too much attention to them initially. After two days of doing so well, our sons monitor began to beep, that beep turned into an alarm, and that alarm resulted in a handful of nurses and doctors at his bedside hooking him up to oxygen. Our son had an apnea spell; during his sleep his heart rate dropped, and he needed assistance getting it back up.
We were terrified. However, the nurses and doctors assured us this was normal preemie behavior, and we shouldn’t worry too much about it. After this little episode, those monitors (that we previously never paid attention to) began to now consume nearly all of our attention. Any beep or alarm would cause our stomachs to drop; each time being reassured that everything was fine, and that’s what the nurses and monitors were there for. After a day on oxygen, my son started pulling out his nasal cannula. We quickly realized that even when it was out his breathing was perfectly fine. We were so happy. That same day, the nurse informed us that our daughter was not meeting her daily feeding goals and was going to need a feeding tube.
Again, we began to panic and wonder what was going on. The nurses once again assured us that she was fine, and this was just to help get a little more in her system during feedings. As soon as the tube was inserted, she suddenly had no issues eating (of course). About 24 hours later, her tube was removed.”
“Trust that your babies are in the best possible place they could be to get the help and support they need. Know that your nurses and doctors, are monitoring your babies around the clock. Don’t feel guilty for leaving to eat or to shower, or to just get some rest (you did just give birth!). Ask questions. No matter how small of a question it may be, ask everything. Talk to other parents in the NICU. This is one thing I wish my husband and I would have done. We were scared and didn’t know how to handle the experience. Rather than reaching out to others, we kept this to ourselves for so long. Finally speaking about our experience to others has been freeing, and it’s shown us that sharing our experience with others can provide them with a sense of comfort in their own situations. Always remember, your baby is in the best possible place that they could be to get the help and support they need.”
NICU story #4, written by: @mrskayla_ibarra
“On September 24th, 2018 I went to my local hospital’s triage with pink spotting. I was 21 weeks pregnant with twin girls. After being ‘forgotten’ about for 4 hours, my water broke. I was in labor. I quickly found out that my hospital and surrounding hospitals did not do life saving interventions on babies younger than 24 weeks gestation. I was told my twins were “medical waste” and had 0% chance of survival. If they were to survive, they would be vegetables. I wasn’t prepared to let my daughters die. I knew the God I serve is bigger than any devastating news a doctor could deliver. I fought for 4 days for a level 4 NICU 2 hours away from home to JUST TRY and save my daughters. I was in labor on and off these 4 days while in the hospital. Finally, they decided to just try. I was rushed to the hospital with the level 4 NICU and on September 27th, 2018 at 22.2 weeks pregnant my little girls were born. Luna weighed 410 g and Ema 500 g. We spent 10 weeks in this level 4 NICU with the twins. It was the scariest time I’ve ever experienced. The twins went septic a few times, Luna caught an infection that almost destroyed a major organ, and Ema coded twice. God was teaching me how to love my daughters every second I had with them as if it were the last. He taught me to lay my burdens at His feet and allow Him to write this story for us. After 10 weeks, the twins were stable enough to be transferred back to our local NICU where they spent 7.5 weeks. Our 22-weekers that were given 0% chance of survival came home at 38 weeks gestation. We spent 17 weeks between two NICUs. Now, the twins are THRIVING at home.”
“Don’t compare one twin’s journey to the other. I would find myself saying ‘Ema is doing so much better than Luna,’ In reality, their journeys were so different, but their outcomes were the same—which was home with us.”
NICU story #5, by @quitaa___
“August 30, 2018 at 31 weeks pregnant I gave birth (vaginally) to my twin girls Amelia and Sophia. Amelia weighed 3lbs 4oz, and Sophia weighed 4lbs. I didn’t get to hold Amelia at first, but got to touch Sophia then they were taken away, while I went to recovery. When I got into a room I got to go visit the girls in the NICU. You have to buzz in and have their baby band numbers ready whenever you call on the phone. I went 5 days out the week, I was pumping so I would also take the girls breastmilk. The nurses the girls had were great! As a new mom they taught me how to change diapers, burp them, soothe them, etc. They would always make sure I’m comfortable and never rushed me or made me feel uncomfortable. I would always Kangaroo Care (skin to skin) when I went to visit, which you would have to do for a minimum of an hour. If you were just gonna hold them it could only be for thirty minutes then they would have to go back into the incubator.
The girls stayed in the NICU for exactly a month before coming home and by then I had time to finish getting myself together mentally. It was a whole new ball game once they girls actually came home. But, with the help of my parents I think I have mostly everything at this point figured out. The girls are six months now and are doing great!”
“You’ll get through it, Mama. The nurses and doctors are great at their jobs!”
NICU story #6, by @swathi.kartyk
“I had a twin boy and girl. Both were in NICU. My boy was there for just a week but my daughter was there for 20 days. I cant forget the day they inserted a tube in her nose for feeding issues. Being her mom, I couldn't do a single thing to make her feel better. I cried all night that day. But things happen for a reason, and on the 13th day she started drinking on her own slowly. I never knew I needed to be so strong to be a mom.”
“To all new mom with babies in NICU, i want to share 2 main things: 1) BE PATIENT. They have to come home with you at some point and 2) If your babies have a feeding tube for drinking issues, then insist the nurses to remove the nasal tube whenever you try to feed them. That was the only way I knew my daughter was ready to drink. She couldn't suck with the tube in her nose.”
NICU story #7, by @mod_.ish
“‘Congratulations, you are pregnant with twins'. So much emotion hearing that. We didn’t do anything to deserve this. Having 2 singletons I was oblivious about the road ahead. It was my hardest pregnancy from the start. I woke up on February 20th with cramping. Ignored it. Just thought it was ligament pain. The cramping would not stop and my doctor advised to go to labor and delivery to make sure everything was OK. Attached to the fetal monitor just waiting. My doctor walked in half an hour later, she looked at the graph and all her humor disappeared. 'You are in preterm Labour,' she said. At that point, I thought it was one of her jokes—but it wasn't. I went numb. All I heard was 'They are not viable babies, I can't deliver them. If I do, they won't make it'. I broke down. We were told to at least make it to 28 weeks. I was admitted and put on a whole host of meds. I was told to lie flat. Two days later I was discharged with strict instructions to lie flat in bed, only get up to use the toilet. I was bedridden until these babies came. I thought this was hard. I moped for awhile but eventually I told myself to prepare myself for what's to come: NICU. I needed to be realistic. I joined a twin mums support group. My family was optimistic that these babies were gonna come straight home. I could not be set up for disappointment. The 3 months on bedrest gave me the opportunity to prepare. I made it to 35 weeks. My babies were delivered via an emergency cesarian as they stopped growing. They were the size of 32 weekers. This was the beginning of the hardest journey for me. My babies were taken to NICU immediately. I was taken to recovery to rest, but I needed to start pumping. I only saw my babies the next day. I was wheeled into NICU and I was emotional. They were small, yet healthy. Fast forward 4 days later. My milk came in and I was so relieved that the boys could stop formula. I walked into NICU and twin A was niggly and vomiting. My gut knew something was not ok but the nurses said nothing. The next day at 12pm I got a call from the doctor. Twin A has a NEC (necrotizing enterocolitis). He was taken off all his feeds and put in isolation. What is NEC? He could die. I rushed to hospital and found him incubated. I could not hold him because he was hooked onto so many drips and he needed oxygen to breathe. At that point I was broken. This was too hard. Two weeks prior, a twin boy died from this. His doctors started preparing me. How I held on—I have God to thank for that. I managed to keep my milk supply up as he could not have formula. It sparked his infection. Everyday was crucial. We prayed and prayed. He finally responded to meds and was on the road to recovery. NICU was 6 weeks for us. The nurses become family. Your fellow NICU mums become your best friends. It eventually seems 'normal.’”
“Don't give up mama. I know you’re tired, you wanna cry. I know you wanna give up sometimes. I know you are in pain from your cesarian. I know your boobs are aching from all the pumping. I know this road feels like it will never end. But know this—don't give up. Don't. God chose you to be there mama. He knows your strength and they will be home in your arms.. Safe!”
NICU story #8, by @mockchelseaj
“My identical twin boys were born at 33 weeks via c-section. Due to my worsening preeclampsia, the doctors said that I just couldn’t be pregnant any longer. I was told that after my babies were born I wouldn’t be able to enter the NICU for 24 hours because of the magnesium drip administered during surgery. Thankfully, my dear nurses took me that night to see my boys by wheeling me into the NICU in my hospital bed. My beautiful twins were in incubators and wearing small CPAP masks, which looked massive on the tiny faces of their 4lb 12oz and 2lb 9oz bodies.
My twins were what the NICU called “feeder growers.” They were there to learn how to eat and grow and fortunately had no other medical conditions. Day by day they got stronger, but sometimes it was one step forward and two steps back. By the end of our approximately one month stay my husband and I felt like experts of all things NICU. As if we had become masters of CPAP, high flow nasal cannula, OG and NG tube feedings, not to mention the constant monitoring of their heart and respiration rates as well as oxygen levels. Our NICU experience was filled with lots of tears, but also lots of smiles. We made friendships with other NICU parents and had our handful of favorite nurses. My twins are now 12 weeks old and as healthy as can be!”
“Ask lots of questions. You are your child’s best advocate, and the more you know about their health and treatment plan, the better you can support their needs.”
NICU story #9, by @mandywclark
“My twins were born at 32 weeks 5 days. Our NICU journey started with both twins being rushed to the NICU after they were born. We knew they would be there because I had a complicated pregnancy but will say we felt like our doctors prepared us well for our journey. Both of my twins were needing help with breathing which can be common with preemies. Both were jaundiced and had to undergo light therapy for a few days. When you walk into the NICU, you hear lots of words that you might not understand and lots of beeping—it is loud and can be scary.”
“First of all, if you have a chance to tour the high risk area of the hospital you will deliver at, please do it. Doing this helped prepare me and understand where each part of the journey would take us. And please remember it is a journey. Where each one might look different or have different set backs, know you are not alone. I would say ask and rely on the staff at the hospital. Don’t be afraid to ask the same question over and over. And if you don’t understand, ask again. Take things one day at a time or one hour at a time as needed. When you get asked how long the baby will be there (which is annoying), just say we are taking it day by day. Best things friends and family can do is to listen to you and bring food or offer to help with older kids or animals as needed. Lastly, you will see babies hooked up to lots of monitors which can be scary, but know that it’s okay and it is ok to cry.”
NICU story #10, by @iron_naner_twin_mom
“The NICU was hard and totally unexpected. I went into labor at 28w4d and our twins spent 56 and 60 days in the NICU. The doctors and nurses repeated “due date” for potential discharge which seemed like eternity. I was there from 7AM to 730PM daily. Why would I be anywhere else?! What helped me the most was journaling. I kept a daily journal of the twins milestones (and set backs). It was all such a blur (and still is) and begins to feel like Groundhog Day. I also did as much as I could with their care (diaper changes, feedings, kangaroo care, vitals, etc.). Even though I was there daily, it was not until the twins were home that I felt the “mom bond” and it took me a while to learn that it’s okay to feel that way. I am glad our NICU days are behind us but oh so thankful for the amazing doctors and nurses! They saved our 28 weekers’ lives!”
“‘The days are long but the years are fast!’ This has stuck with me and so true!”
NICU Story #11, by @the.melguizotwins
“Our B/g twins were born at 30wks 4 days. They spent a total of 52 days in the NICU. It was terrifying and beautiful all at the same time. There’s really nothing that can prepare you for this experience, but I’ll try my best to share as many tips as I can. The nurses and doctors are all there to help. Don’t be afraid to ask questions or ask them to explain anything you might have questions or concerns about. Be an advocate for your babies. If you don’t like something or disagree kindly let them know. Heres an example: One day I arrived to see one of the nurses feeding one of my twins formula. Im not at all against formula. My twins are actually both on formula now. However, at that time, I wanted strictly breastmilk. After this incident, I was sure to ask them to please add ‘BM ONLY’ on both babies’ charts and that avoided that incident happening ever again. Again, don’t be afraid to advocate for your babies—I cannot say this enough! Take advantage of any NICU programs your hospital offers. Mine had classes and courses you could attend as well as mixers where they provided food and you could chat with other NICU parents going through the same thing. This really helped keep me sane. Check if your NICU offers primary nurses assignments. In my NICU, you were able to create a primary nurse list. This was a list of your favorite nurses. Whenever any of our primary nurses were scheduled, they would be sure to place them with our twins. This gave me peace of mind, especially at nights whenever I left. Finally, document everything. Every little milestone, feeding change, diaper blow out (oh yes, my twins had quite the reputation with blowouts.. those poor nurses!). You will want to look back one day and see how far you all have come and show your little babies just how strong and little fighters they were.”
“My biggest advice for you, Momma, is take care of yourself and be kind to yourself. You are doing the best you can. You’ve got this!”
NICU Story #12, by @little.ones.stationed
“My twins were born at 34 weeks. They spent 2 weeks in the NICU. Initially, they were in an incubator, but once they were able to regulate their own temperature, they were moved to a standard baby cot. They required a nasal cannula for 5 days and an NG tube for feedings. I was able to bring in my pumped milk and fortify all bottles with preemie formula. This was really easy to do while I was still at the hospital. Once I was discharged I just brought in my breastmilk in a cooler and stored it in their fridge. The NICU nurses were super helpful in teaching us safe feeding practices and multiple ways to burp our babies. Before being discharged, we had to watch 4 hours of videos detailing all kinds of infant care (CPR, safe sleep, car seat safety, etc.). The babies also had to pass a car seat test. Despite missing our babies terribly, our NICU team made our experience easier to manage.”
“Don’t be afraid to step in when the nurses ask if you’d like to try something; it will help so much to know how to care for your NICU babies once they are discharged.”
NICU Story #13, by @me2books
“After 3.5 years of unexplained infertility, countless interventions, and a failed round of IVF, I was pregnant with identical twins. Unfortunately, my miracle pregnancy was cut short when at 28 weeks my twins were delivered via emergency c-section. Their combined birth weight was less than 4.5 lbs. I was able to visit them in the NICU on the night they were born, and hold them the next day. I developed an all day, everyday NICU routine that became my normal. Pump, rush to the hospital, wash hands, kangaroo, pump, check temperatures, stare at monitors, read, ask questions, pump, worry, ask more questions, worry, pump, and change diapers. Between both twins, we dealt with all the common health problems associated with prematurity including jaundice, apnea, and PDAs. One twin developed an infection that required a lumbar puncture. But after 65 days, both babies were finally able to come home.”
“The NICU experience is traumatic, but you will get through it with support from others who have been there before you. Don’t be afraid to ask for help!”
NICU story #14, written by: ejona_dyrmishi.s
“Since I knew I was having twins, I prepared myself for prematurity because the doctors warned me that it might happen with twin pregnancies. But nothing prepares you for the moment you see your babies full of tubes and not knowing if they will be strong enough to pass it. I delivered my babies 28+3 weeks. Everything was going fine; they couldn't find out why I was ready to deliver that early. Baby Boy was 1.13 grams and Baby Girl was 1.03 grams. It was the worst feeling ever not having the possibility to keep your babies on your chest and smell them after you bring them to life—but to see them go away fast with the nurses and possibly feel more connected with their nurses than with you!
It was the worst period ever of my life. Everyday going to the hospital wishing and hoping that they had a good night. Every day listening to the machines and the oxygen dropping--my heart would pulsate so fast.
I remember, the room next to us had a problem with the baby. Someone was feeding her and she was screaming for help. And you freak out--what if that was you? I can't even describe how it feels. I knew that Finland had the best NICU hospital care but still I was terrified. I saw myself hopeless... Asking God ‘Why me? Why my babies?’ And you have no answers. You just have to wait and be strong.
My baby girl was the smallest baby in the hospital, she was born 1.03 grams but quickly she dropped to 950 grams. It was the hardest time to see her hungry and I couldn't give her more milk because her stomach couldn’t take more.”
“After successfully passing through this period, I learned that we are stronger than we think. And their bodies aren’t fully developed. It will take time until the due date to grow. So be patient and give them their time! When I see my 6-month-old babies now, it looks like it never happened to them. The most important part is that they will not remember what pain they had from the IV or difficulty breathing.”
Thank you, again, to all of the wonderful mothers that shared their experiences and words. If you have had a child in the NICU and want to share any wisdom, then please feel free to comment below.