It is free to be kind to others. Smile and say hi to someone. Listen to someone. Do other random acts to pay it forward. These random acts can outweigh the negativity going on in our world. These acts can help someone who is lost or broken without you knowing because it was just the right thing to do. Who knows, if enough kindness happens, maybe the scary stuff will be muted or go away altogether. Lets give these amazing fighters a positive and kind world to grow up in.
It doesn't seem possible that FIVE whole years have come and gone. After five years, I can say that the feelings and emotions of going through the NICU do not ever completely go way. While I can now talk openly about their birth without tears immediately welling up, this was not the case in the beginning.
I am not the same person I was five years ago. I see life through a completely different lens and it has shaped how I am as a mother. I owe that to the pain and struggle I went through having these boys 13 weeks early. While it is certainly not ideal and something I wouldn't wish on anyone, I can say that I am a better mom because of it. I don't take things for granted- watching my boys do simple things like climb a rock wall or swing from monkey bars in our backyard fills me with gratitude and awe. It is a miracle that they are both here and thriving, especially after being told one had no chance of survival.
Since having preemies, a common question I have seen the last 5 years is, "But how is your child doing now?" Things like, "Those who've had babies early, do they any have issues? Learning disabilities? Long term health problems?" These questions come after parents learn that they may need to deliver prematurely and are anxious.
Our boys were born too soon, too soon than doctors recommend. They came right before the week that "risks decrease dramatically," but the thing is, no one is guaranteed a healthy baby simply by week of delivery. Forty weeks gestation does not guarantee that.
They may have started out very delayed in milestones, but that was only their starting point. If you looked at their first two years of development, they were far behind "typical" peers, especially when some doctors say that most preemies "catch up" by age two. That was not the case for us at all. I'd be lying if I said I wasn't a worried and anxious mess those first couple years, but I can tell you now that preemies work on their own timeline. While other kids took a running leap and mine bunny hops to certain milestones, at 5 years old you can't tell who arrived first and how they got there.
We recently went to a playground and I cried as I watched our youngest, 1.5 year old, climb steps effortlessly to get to the slide. I do not take this ability for granted. This was the same park we'd meet a therapist at to have our then 3 year olds practice being able to walk up and down those same steps.
With our youngest, we now play with whatever toys we want. With our preemies, I had basically lessoned planned out our day with different toys and activities to focus on improving certain skills. This was in addition to weekly therapy appointments. My boys definitely required extra help to meet certain milestones, but does it mean they are not worth the extra effort? They provide the same amount of love, joy, and laughter to our family as their siblings. A full term child may also require extra support to meet certain milestones. There is NO guarantee! Do I love my other children more because they didn't have to work as hard? Of course not! But I am a bit more inspired and in awe of what my preemies overcame and how hard they fought to achieve the same thing.
Having a premature baby is a scary and uncertain experience, but I promise you that the baby or babies you've created is worth it all.
- NICU Mama Michelle
I’m ready (I think). My sons, Geno and Ronan, are now 2 and half years old. In some ways it seems like forever ago, and in others, it all began yesterday. For quite some time, the trauma of our NICU journey had left me speechless. But if my tiny mighty fighters could brave 65 days in the NICU, I can certainly find the courage to put some of that into words. So here it goes. These are the things I needed hear. Or things I heard, but didn’t believe. These are the truths and lies of NICU motherhood:
When my son was nearly a year old, I started a NICU parent peer support group in my city, in response to the lack of support for parents like myself. It is in these meetings, where we talk about all that we witnessed in the NICU, the lasting effects of trauma, and the unique nature of raising former NICU babies (and, if we’re being honest, the unique nature of raising former NICU parents too). A topic came up the other night in one of these meetings. It was one that has come up for all of us, many, many times before.
The instinctual, hormonally driven, and irrational divine animal instinct to be close to, care for, and protect our young. One might even argue that the instinct of a new mama is the most powerful thing there is. Touching your baby, holding your baby, smelling your baby, hearing your baby’s cry, feeding your baby. These are all the most basic instincts for a mother.
In order to survive and effectively function in the NICU, we have to suppress so much of what’s natural. We take that primal, instinctual, fierce, hormonal, mothering energy, and we put it aside. We wrap it in the lanyard that holds our NICU visitors badge, dip it in some hand sanitizer, and place it to the side.
The truth is, that in the process of releasing and taming something so natural, so instinctual, and so powerful, we do a lot of damage. I don’t know that there’s a way around it, and it sucks.
One of the first things I tell a newly appointed NICU mom when I talk with her is- “remember, you are Mom. You are in charge. You know best. No one can do it better than you.” And it pains me every time I do, because I know that it’s a tall order for her to actually believe it. I know that in the NICU, you only “sort of” feel like a mother.
The truth though- you are MOM. You know best, and you do it better. Better than any nurse, published neonatologist, specialist, or machine. You are mom, entirely and completely.
It will soon be 3 years since my son came home from the NICU. Today, I can say firmly that my mom-stincts are gold. I’m working everyday to allow them to carry me through motherhood without fear, and to trust myself always. It takes time, it takes having support, and it takes healing. Each loss you have felt, will slowly be met with a gain, and in time you will develop a bond with your baby, and confidence in mothering.
I never was a religious person, I considered myself to be spiritual. The NICU changes people, and this was one of my positive changes. I was watching miracles happen through the power of prayer and it brought something within me alive. This is a small portion of our journey.
My sons are both NICU warriors; Grayson who is two and Owen who is six months old. Grayson was born at 29 weeks and 4 days and Owen at 28 and 6 days. They both weighed nearly the same, Grayson at 2lbs 14oz and Owen at 2lbs 14.6oz. I had Grayson vaginally and Owen emergency c section and they were both in the NICU 71 days.
I can remember anticipating seeing my firstborn for the first time, getting wheeled down from recovery in a wheelchair four hours after giving birth. Passing all the doors with tiny isolettes and hearing the bells and buzzing of desating babies. Walking in and seeing Grayson with all those wires, transparent skin, bright lights and face masks wondering if he was going to live, was SO scary. All I could do was breakdown and cry. I remember a nurse coming in and explaining a ton of information that I probably only retained three percent of. I was officially in a daze.
I can remember laying in my hospital bed, hearing the babies cry in rooms surrounding mine, and the lullabies that would chime and hum a tune. It was a difficult thing to hear those crying babies as I pumped and pulled at my nipples to get the slightest amount of milk to feed my baby through his tube, I wanted him at breast. I resented those parents that had their baby bedside and felt completely robbed of my pregnancy and birthing experience. I just wanted my baby to be plopped on my chest, so I could have tears of joy instead of fear and have my baby bedside.
Leaving the hospital without my baby was excruciating and very difficult for my marriage. We were both going through the same thing, but our mindset was completely different. It would take a lot of communication and fights to understand what one another was feeling and what each of us needed in that time.
I was terrified when Grayson was intubated, I couldn’t help but think my “poor baby”and how confused he must be. Then there were the bruises on his tissue paper skin from the PICC line attempts... and the sores on his face from the tape holding his CPAP machine. It was all just a heart wrenching experience.
The MRIs, scans, ultrasounds and X-rays meant more uncovering of issues my baby would battle. Test after test it was discovered that Grayson had a hole in his heart, a brain bleed, swollen ventricles in his brain, malformations in his brain and a bicuspid valve in his heart. It felt like the scary findings would never end and these “common” preemie procedures would be ongoing. I remember sitting in a room at the end of the NICU hall, just down from my babies room. It was all window. I stared at the cars driving past as tears streamed down my face, begging for it to be a dream and that my baby would be okay. After his diagnosis, I did research and discovered the terminology they used meant he might have epilepsy, and may need surgery on his bicuspid valve in his heart. The rest of the issues were common in preemies and should resolve on their own, and they did. Grayson is followed closely by a neurologist and cardiologist, for his malformations (possible epilepsy) and his heart condition. As of right now, he has no complications and is a healthy two year old. He only delays in speech and even that is coming along. He is so inspiring and strong, and even helped me through Owen’s NICU stay more than he could ever understand.
During my second pregnancy, I was required to take Makena progesterone auto injector needles that my husband injected into the back of my arm every week. My doctors were unsure the reasoning why Grayson arrived so early and saw me as high risk, which is why they prescribed me this medication. The needles were painful, I cried lots of tears and definitely wanted to quit them more than once. I was enraged when Owen arrived early and they clearly didn’t work for me.
I remember again being wheeled into the NICU to see Owen. I was much stronger than last time, waving and flashing smiles to the nurses I knew from the first time around. I also got to see Owen and kiss him on his forehead after the c section, before he was taken away to the NICU and that helped a ton with my anxiety. I kind of knew what to expect.
This time it was an extremely difficult healing process for me physically. I can still remember the shooting pain as the nurses would push down on my stomach to help prevent any blood clots. I would hold my breath and moan in pain when they would release, just to push again in another spot. The pain of walking, sitting, standing, bending, laughing, coughing etc. was almost unbearable. My c section was definitely worse for me than my vaginal birth.
Being discharged before Owen was just as painful as it was with Grayson. Passing over the doorway lines that separate the hospital from outside, was a feeling of abandoning half my heart. Then there’s the comments that everyone feels necessary to share “he’s where he needs to be right now”, I don’t think anything could make you feel worse. I don’t think anything could ever prepare a parent for that car ride leaving the hospital without your baby with you.
Owen was transferred to main campus a week after birth due to complications with pooping out his meconium (a babies first poop). He was getting a distended belly and vomiting anything he was fed. At main campus, he went through surgery on his intestines. We initially thought he’d have a colostomy bag but all the surgeon ended up doing was milking his intestines to help loosen the meconium. It was determined the latter end of his intestine had a smaller opening than it should, and for this we would wait for it to mature and hope it grows to its normal size. He received rectal irrigation’s and suppositories daily to help pass the meconium. He was then diagnosed with meconium ileus, which goes hand in hand with Cystic Fibrosis. He was given a 99% chance of having this incurable disease. The test results took about 5 weeks to get back and during that time he also received a biopsy for Hirschsprung’s disease. I cannot even express with words the worry and anxiety I experienced while waiting for these results. I kept thinking how I wasn’t strong enough to be a cystic fibrosis mom with all the treatments, hospital stays, surgeries, watching my baby struggle to breathe, and have a shorter life expectancy compared to others. I would breakdown crying in the shower, eating my breakfast, playing with Grayson, in the middle of conversation and over the phone. It’s possibly the lowest and out of control I’ve ever felt within my life. Thankfully every week for the “6 weeks” they say it takes to heal from a c section, I had family or friends stay with me to help with both Grayson and my sanity. Grayson was most definitely angry with me after a short time of not being able to pick him up when he was hurt, wanting held or to be put to bed. The guilt during that time was very testing because I knew all he wanted was mom.
I prayed, others prayed and a guardian angel that received his wings while Owen was in the NICU room next to him, provided safety. The power of prayer is amazing. The results were in for Owens tests and it was a NEGATIVE for both! I had to get confirmation a few times, I was in such disbelief. I even pinched myself to ensure I was not dreaming. I could breathe again, I was getting tired of reading my newly inked tattoo “this too shall pass”, over and over again trying to convince myself not to worry (what ever will be, will be...right?). My tattoo still takes me back to those unknown feelings of worry and stress, but I’m so thankful we came out healthy and well.
Both my boys spent their last two weeks of their NICU stays, focusing on eating. They struggled a lot with grasping the concept of suck, swallow and breathing while bottle feeding. I can remember it being the only thing holding us back. We had taken the discharge classes, completed the car seat test, got their immunizations and were literally just needing them to eat. It felt like an eternity but we could finally see the light at the end of the tunnel and we wanted it NOW.
It was a bitter sweet moment walking out of the hospital, baby in hand. I kept thinking about my resentment to families leaving before us, and thinking how they must feel watching us walk out. My heart sunk for those just beginning the rollercoaster ride and said a prayer as we left. I was also just very scared at taking my babies home and not having machines and nurses to monitor 24/7. But we did it!
For both boys I made it to my 6 month goal of pumping. It wasn’t easy and most definitely wasn’t ideal for me, but I did it and am proud to formula feed and breakup with that milking machine. I never anticipated breastfeeding/pumping my second but told myself if I could, and if he was a NICU baby, that I would. I am not going to lie or exaggerate, but I hated every moment of it and it caused me a lot of tears and stress during the whole NICU rollercoaster. It was definitely an additional stressor.
Grayson and Owen are healthy happy kids now, who bring us the most joy. It’s hard to put into words all the feelings of ups and downs in the NICU, but just know you’re not alone. Watching these warriors grow and learn, hitting their milestones and just loving life is the most rewarding feeling of overcoming something that was once so unpredictably fragile. The NICU will always be apart of us and we are thankful for the community of support.
So while you sit beside the isolette, or sit remembering your NICU past, or your friends NICU experience, or whatever ties you to the NICU... just remember you’re not alone and we all stand together to support one another. Some days will be harder than others and that is okay.
Prior to giving birth to my preemie, I honestly did not know much about prematurity or personally know of many people that have had preemies. I knew my husband was a preemie, but we never really talked much about it at that point other than the fact that they had to cut diapers to be small enough to fit him and he had to get doll clothes in the beginning because newborn clothes were too big. I was reading “What to Expect” while pregnant, but it really only touched on a healthy, full-term pregnancy. My OB also gave no indication that this could be a possibility for me, always saying things look great, but had I known, I would have tried to do some research ahead of time to try to prepare myself. The thought that I would be the one in a one in ten statistic never crossed my mind.
While pregnant, a friend of mine went into labor at 24 weeks and I watched her baby’s NICU journey on social media. I was in awe of this tiny human and what she endured. She called her the “tiny warrior” and that is exactly what she was. First she fought to breathe and then to grow and I watched her be victorious with both. I was nervous when I hit 24 weeks because of this, but then my pregnancy continued so maybe I was part of the nine of ten and wouldn’t have to worry about this happening.
Then everything changed.
My third trimester started and I was still good with no indication of going early, but 4 days after that, Poppy came. I was now the one in the one in ten. When you are the one, without much prior knowledge of prematurity, you are blindsided, you are scared, and you feel alone because you don’t have that many people you can turn to for advice in this situation because they have never experienced prematurity. I was lucky in that aspect because I had a friend whose NICU journey ended the day mine had started so I was able to talk to her right away so I could start to learn what to expect. Even though you are riding on the biggest emotional rollercoaster of a lifetime, you have to be strong, you have to be positive, and you have to be the biggest cheerleader for your tiny warrior. You educate yourself on a topic that was foreign to you before you delivered and now, after the NICU journey, you feel like somewhat of an expert. Conversations now include medical terminology that you might not have otherwise used in life if it wasn’t for your preemie and reaching milestones means more to you than you could have ever imagined. The information I learned about prematurity and how common it is I have also used to inform others so they can be aware too. While all of this is happening, you will learn that you are not the only “one” out there. Last year while fundraising for our March of Dimes team, I found out I knew a lot more of the ones. Friends from high school would make a donation because they had a NICU baby too or knew someone that did. This year has been no different for us. Since returning to work this school year, there has been an outpouring of love and support from the community. They have come up to me at events to let me know that they had a preemie too. Their support has been so much appreciated! I have also met people out and about running errands or trying to get raffle donations for an event that had a preemie or know someone that did. I have had more friends have preemies in the past year too, so I became a person they could talk to if needed. Because of all this, my community of ones is constantly growing. I would not change the fact that my daughter was a preemie. She amazes me each and every day. She is my hero; my miracle. She has made me proud to be part of the one.
Those I met in the NICU became my second family, a family that my husband and I have this urge to give back to now. What you do when you are the one can make the difference to someone else that is currently going through it. We have registered Poppy’s Posse again this year in the March of Dimes Walk and are hosting fundraising events to help raise money to fund research to help premature babies have a fighting chance. We go back and speak to current NICU families at Hillcrest and help answer their questions so they don’t feel alone in their journey. I was also lucky enough to work for a school district that allowed me to lead a service project to benefit the area NICUs. Every little bit helps when you are in the NICU.
They say, “one is the loneliest number”, but that does not have to be the case at all when you are the one in ten and when we are talking about prematurity and the NICU family.
My Premium Promise,
I never imagined that I’d be part of such an elite group of women. But thanks to you, Isaac, I am! I am a preemie mom. I am a warrior mom. I am raising one of God’s most precious miracles. At 26 weeks, I gave birth to the most beautiful baby boy! A tiny 1lb 13oz. Wow! It’s been 14 months since the day my life changed forever, since the day I heard your tiny whimper over all the voices in the operating room, since the day I found strength that I never knew I had. I chose the name Isaac because of the story of Abraham and Sarah. You were my promised son. You were my ISAAC! After experiencing the loss of two children, I didn’t think that I’d ever get to be a mom. God had other plans, plans far greater than I ever could’ve imagined. God gave me YOU! God wanted me to know from day 1, you were a warrior! Your middle name, Alexander, means “defender of man”. That’s no coincidence! You came into this world making a statement and I pray that you always live that way! You are a FIGHTER! You were chosen by God to do the IMPOSSIBLE! I mean after all, He chose you to be born with something that only affects 1 in 12,000 babies! Can you say SPECIAL?! You have shown mommy what it means to be brave. Because of you, I will never give up on anything. Because of you, I will continue to share a story of God’s faithfulness and unmerited favor. Because of you, I get to look a miracle in the eyes every single day and remember that God cannot fail. No matter what life throws your way, you will not know defeat. You will only know a lesson learned. You will change lives my sweet boy! And guess what?! Mommy and Daddy will be cheering you on the entire time!
….written beautifully by Carrita Flie
I honestly feel this has been the fastest year of my life, but why should it have
gone slow? My pregnancy was fast forwarded to the end three months early, so why
should the rest of the first year of my daughter’s life have been any different? Some
say the first birthday party is meant for the parents because they have kept their
child alive for their first year of life, but if you have a preemie, that statement
couldn’t be further from the truth.
These memories spark a proud mama bear in me; proud of her for how far she’s come, proud of our family for what we have gotten through, together. Some people might be scared to have a random picture pop up of their baby when she was only 1 lb 5 oz, three chest tubes, much smaller than my husband’s hands that are cupped around her. For us, and even for Holly, who is 2 and a half- we only see our child.