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Dear NICU Momma

Four years ago, I wish I had known lots of things.

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I wish I would’ve known that my hands would no longer be recognizable from all the hand washing.

Or, that people would say things that were meant to be nice, but really just cut to the core of our reality. “Oh, you’re so lucky you get to rest while someone else babysits your baby.” Oh, honey. I hardly slept a wink. I was on the phone with the night nurse quizzing her endlessly about my son and his recent antics. I would hardly call my every three-hour pumping sessions as “restful.”

I wish that someone had told me that it was okay to cry when I left my son each night in the NICU and completely normal to cry when I left my other four children at home to go see him.

I wish I had known that the feeling of helplessness that manifested itself during our 44-day NICU stay would fade away and then re-emerge at the most inopportune times.

I wish that nuns lived at the hospital.

I wish that someone had told me I didn’t have to go it alone.

I wish someone had told me that I was doing enough. Loving my son, Luke, enough. That I was bathing him right. Pumping correctly. Sitting at his side the right amount of time. Loving my other children the same. Giving my husband encouragement. Updating my friends and family.

But, it always felt like I was treading in the deep end. We would get crazy awesome news only to be sucker punched the next day. Some people call it the NICU rollercoaster. I call it the third ring of hell.

What I came to realize through our NICU stay and subsequent surgeries, hospital stays and endless specialist and therapist visits is one very simple lesson. I learned to love, despite all the odds.

It’s hard to do – that love thing – with all the beeping and coding. All the nurses running, charts clicking and specialists knocking. It’s hard to see where you want to be when you look around and hardly know where you are.

For me, I found love in the smallest of moments. It was always those seconds when my heart dropped and all I could see was the black hole of despair, that God would creep in and shine His light. Sometimes I told him to get the eff away. But mostly, I listened. There was the day our son had his MRI, an unexpected order from a newly gained specialist, neurosurgery. The news was not good. I closed the curtain to our bay, turned down the lights, put Luke in my arms and began to feel sorry for myself. I’m fairly certain I went through half a box of tissues that day.

And then I heard it. Every NICU mom knows that the quick feet of nurses running down the hallway and the hurried feet of the pediatric surgeon are never good. For more than 20 minutes, I watched the activity below that two-foot space between the curtain and the floor. And then came the tears. A mom screamed, “NO.” And I knew. The NICU fell silent. So, during my pity party a baby had died. And that just seemed like the unfairest of unfair things to ever happen to anyone.

An hour later, our sweet red-eyed NICU nurses welcomed another emergency transport. Another miracle. Another life to save. And the hum of the NICU continued, but not without all of us there knowing the NICU never makes promises.

There were the moments of sisterhood, too. As another mom and I shared our stories at the scrub-in sink, what began as two strangers washing away germs turned into a genuine friendship that continues, four years later. Who knew that the nasty smelling hospital soap could bring someone that amazing into my life? God, that’s who.

The NICU club isn’t for sissies, it’s for fighters. Time to dig out your big girl meshy panties and pony up, ladies. I wish I could tell you that your baby will be fine or that you’ll be home in a jif. I wish I could tell you that prematurity won’t have lasting developmental effects or that you won’t suffer from PTSD. Every journey is different. Every baby, every hospital, every specialist, every outcome – they’re all different.

As I look back on our journey, four years ago, I see a changed woman in the mirror. I see one who is determined to be an advocate for her son. I see a mom who has a deepened appreciation for life and greater empathy for difficult situations. I see a heart full of gratitude. I see a survivor, who also really needs to get more concealer.

While the world gives a nod to National Prematurity Awareness Day today, all I have to do is look into Luke’s eyes and know it’s true meaning. Prematurity can happen to anyone. But it doesn’t have to define who you are or who your child will become. Dream big. Order that 2T shirt that you know won’t be worn for months, maybe years. Stand up to a specialist. Trust your instinct. And love that baby with all you’ve got.

As one of my favorite artists, Brandon Heath, sings, “Love is right here. Love is alive. Love is the arms that are holding you. Love never fails you.”

It’s true. Wipe away the tears and know that you are not alone. So many of us have sat in that NICU rocking chair thinking the same things you fear and hope and know and want. We get it. Now, go love on that baby.

Love,

A NICU Mom Who Has Your Back

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48 Comments

  1. Laura on November 17, 2013 at 11:40 am

    Very well stated! NICU is a tough place to be. We were at Dell with our twins 156-171 days and a rollercoaster it was! In the end, we thankfully brought our miracles home. May God be with all the preemies and their families on this day (and everyday) of awareness.

    • Kathryn on November 17, 2013 at 3:23 pm

      What an awesome ending to a very long stay at Hotel Dell! Glad to hear you’re home.

  2. verdinalouisa on November 17, 2013 at 12:09 pm

    Kathryn, Thank you so much for sharing your heart once again. Although I have never lived the NICU experience, I feel that I have lived it through you. You have given me so many opportunities to pray. I love you and I love Scott and your children… looking forward to #6!

    May God continue to bless you,
    V

  3. Nora on November 17, 2013 at 1:02 pm

    thank you so much for this- found you “blog-surfing” somehow quite a while ago and have never commented but I wanted to thank you for this post. It touched my heart and is exactly what I needed to read today. I was 33 weeks pregnant yesterday and ended up (back) in the hospital on bedrest. We are optimistic that our precious baby will hang in there for a little while longer but your post reminds me that God truly is in charge and no matter the outcome he (and we) will make it through this!

    • Kathryn on November 17, 2013 at 3:22 pm

      Nora, please keep me posted…and keep cooking!

  4. Heather on November 17, 2013 at 2:48 pm

    Thank you for sharing :). I’m sitting rocking our sweet baby baby in the NICU as I write. I look forward to the day when we can look back on this experience and say, “Look how far he has come!”

    • Kathryn on November 17, 2013 at 3:22 pm

      As hard as it was to rock my baby in the NICU, those are some of my sweetest memories. Just Luke and I, being fully present to one another. God bless you as you travel the NICU road…

  5. Dorian Speed on November 17, 2013 at 3:27 pm

    This is a beautiful post. I can’t believe someone said that to you about someone else “babysitting” your baby! That’s crazy talking.

    I am thankful every day for the NICU staff who were with us during each of our three children’s dramatic entries into the world. The NICU is our “normal.” We’ve never had the experience you described, though, of being there while another baby died. I’ll be praying for that family, whoever they are. What a painful loss.

  6. Micaela @ California to Korea on November 17, 2013 at 5:24 pm

    Kathryn, this took my breath away. I’ve never had the experience of being a mother to a NICU baby, but you really painted the picture here. I’m so glad your Luke is there with you, and so so glad you shared this with us. Praying for all mothers, fathers, and NICU babies right now.

  7. Kristy Larson on November 17, 2013 at 5:25 pm

    Breaks my heart to know that you felt so alone. Those things that you wanted affirmation for, that we didn’t provide them for you, or they were unable to be expressed, makes me sad. I know as a medical team, and especially from one of Luke’s primary nurses, I would have wanted to bend over backwards to let u feel good about the things you were worried about, yet we fell short. Luckily, God is in control, cuz I know he had you in his arms. Thank you for sharing your story to inspire and comfort others, and thank you for sharing your precious Luke with us!! love, nurse Kristy

    • Kathryn on November 17, 2013 at 7:27 pm

      Kristy, I think every NICU mom feels alone from time to time. Please know that I consider you, and Luke’s many NICU nurses, the people that helped me hold it together on the days that were so incredibly hard. I’m not sure I would’ve made it out of there in one semi-stable state without all y’all. Each of you went above and beyond and you are forever connected to my heart!

  8. Erika on November 17, 2013 at 6:44 pm

    You’re right, Kathryn. It’s not for sissies. It takes you apart – rearranges the pieces – and puts you back together. It is humbling.

  9. Susan on November 17, 2013 at 7:50 pm

    I just wanted to say how much I love you and loved this post. Luke is beautiful, what a fighter!! And, you, you…..talk about fight. Still teary-eyed….

  10. Hillary S. on November 17, 2013 at 8:23 pm

    Whoa. This post leveled me, but thank you. You can apply this message to so many moms out there worried about their little ones with issues too. That amazing place that we all wish we got there faster– just love on them and believe. It truly is everything.

  11. Meg on November 18, 2013 at 2:26 am

    Almost exactly twenty-eight years ago, I was a NICU baby in Memorial City Hospital in Houston. I wasn’t premature, but I was an extremely fast emergency c-section, extraordinarily tiny, and baptized at three days old. Thanks to my parents, the nurses, the doctors, and God, I came home a few weeks later on Christmas Day wrapped in a giant red stocking. By NICU standards, I had an easy stay — I just had to stop losing weight and get above five pounds (they lowered my standard!) — but I know it was incredibly hard for my parents. I’d like to tell NICU parents that they shouldn’t feel guilty if their baby is “better” or “easier” than other babies in there — every stay is hard and every baby fights their own battles.

  12. Jackie on November 18, 2013 at 8:48 am

    I have been following your blog for a while and I love this post. I am a former NICU mom, unfortunately my Meghan didn’t come with us. She went home with Jesus. It is not an easy situation to be a NICUm mom or a mom to a baby angel. That was 12 years ago. And we thank God daily for our 2 healthy happy boys that wish they knew their sister in heaven. Thank you for your continuing posts. I love reading about your family.

  13. katie on November 18, 2013 at 10:26 am

    absolutely beautiful and tear inducing post. thank you and God bless.

  14. Hailey on November 18, 2013 at 12:52 pm

    My daughter wasn’t premature but we were in the nicu for 76 days before I got the call that she was taking her last breaths and to get across the street to the hospital now ( we were at a Ronald McDonald house). We didn’t get to take our angel home. But I’m happy for all of you that did 🙂

  15. Jennifer Degl on November 18, 2013 at 12:58 pm

    This was said so beautifully! And it is perfect timing for World Prematurity Day! My daughter Joy was born at 23 weeks last year. Due to modern medicine and prayers she is doing great today.

  16. Monica on November 18, 2013 at 9:40 pm

    I love to hear stories like this. I used to work NICU (and still do on occasion) and it’s so hard sometimes to find the right words to say. Seeing what you wish someone had said gives me some guidance in some helpful phrases of encouragement to moms. Even though I work there I will never know what you mommas go thru unless I go thru it myself. But I pray for you and am rewarded when I see those little ones go home strong and come back to visit. Thank you for your story. I hold stories like this dear to my heart. Anything that will help me to be a more compassionate nurse 🙂

  17. Benedicte Fuller on November 19, 2013 at 9:01 am

    I was only in NICU for 8 days with my then 8 day old baby, her life was never really in danger, but it was a real eye opener, especially being surrounded by people with babies in far worse condition than mine. She had pneumonia and bronchiolitis, and besides the antibiotics and oxygen the specialist prescribed “lots of breast milk and lots of love”. I took him to his word. Thank you for this post. You may like this song by an Irish band, about Love: http://www.youtube.com/watch?v=5gxjfjj8r98. Lovely blog, thank you!

  18. […] A few weeks ago, we trekked down to the children’s hospital for the annual NICU reunion. There’s just something very healing about hugging the neck of your English doctor that makes the afternoon smashing. We saw so many of our favorite doctors and nurses and even ran into a friend of mine from high school. What?! My favorite quote of the day really is from that English neonatologist. After I told him we were pregnant again, he got the biggest grin and in his best English said, “Stay the hell away, ok?” I do love that man. He was the one who walked with us during Luke’s darkest days and now we get to rejoice in the progress. It is sweet destiny. November is prematurity awareness month and if you know of a mom in the NICU, here’s the letter I wish I would’ve read four years ago. […]

  19. Deena on February 18, 2014 at 2:38 pm

    What a great article!! I wish I would have had a year ago when our NICU journey began. I did feel sorry for myself a lot and was so jealous of other Mothers leaving the hospital with their babies. I feel like I missed out on so much from the PTSD symptoms that I was unable to enjoy the happy and good times in my son’s first year due to the traumatic experience taking over my thought.

    • Kathryn on February 18, 2014 at 3:06 pm

      Thank you, Deena. We all struggle with jealousy, I think. It’s a natural and normal reaction. I pray the future holds many moments of joy and appreciation with your son. Out of curiosity, how did you find the letter? Thanks for stopping by!

      • Deena on February 18, 2014 at 3:59 pm

        Thank you! I follow a few preemie support groups via Facebook. One called Preemie Awareness and Support shares the link for your letter. It is a wonderful resource as there is a group of preemie moms who manage the site and always find amazing reads I share.

  20. siobhab on February 18, 2014 at 2:56 pm

    i wish i could read the whole thing but it got to point i was sobbing to hard to continue on! my son is 14 months and a fprmer 28 weeker we almost lost him more than once even as recently as a month ago we mourned a child before we celebrated his arrival because the odds were against us i grieved like he was already gone up until he was two months old and we left thag hospital i hate that i still hold a guilt i couldn’t keep him safe for the whole nine months thqy i couldnt kiss the pain away no one understands NICU or how you handle it unless they also trudged through themselves thank you fpr this

  21. Sebrina Pritchard on February 18, 2014 at 3:37 pm

    Thanks for sharing your story. My daughter was in the NICU 10 years ago at the birth weight of 1lb 14oz and after 70 days and nights of all the noises that are there I though I’d never sleep again. Now today she is a happy healthy 10 year old with a bright future. I thank all the NICU moms, dads, nurses and doctors for all there help support and care while we were there.

  22. Jessica Lovellette on February 18, 2014 at 5:01 pm

    I loved reading this, it brought back every memory from our time in the NICU we spent 5 mo. with our son & 3 mo. With our daughter….it was the worst time of our life but at tai mess some of the brightest spots. It is an experience that no one can understand unless they have been through it. Thank you!

  23. pam carson on February 18, 2014 at 8:01 pm

    I’m not a NICU mom but a NICU grandma. Twin girls, may 9, 2003. Born @ 26 weeks. Weighing 1lb. 8oz, 12″ and 1lb. 1oz., 11″. Our smallest angel passed away @ 45hours of life on Mother’s Day (my daughter’s 1st mother’s day). The nurses were amazing during our time with our Angel. The smallest spent over 100 days. The rollercoaster ride of emotions is unbelievable. A couple comments that were made “at least you didn’t have her very long, so you won’t have that many memories”. “At least you still have one baby”. My best advice is “if you don’t know what to say, then say nothing”. I have changed and I’ve been told by some, they don’t like the new me. You walk 1 moment of time in the NICU and we shall see who you are at the end of just 1 moment. It does change you. I learned more from my precious angel in her 45 hours of life than I had learned my entire life. And for that, I thank her. I’m a better, more loving, understanding and patient person.

    • pam carson on February 18, 2014 at 8:04 pm

      I should have proof read but even after 10 years, the tears still flow. I said our smallest spent over 100 days but it was the 2nd born and biggest of the babies that spent over a 100 days in the NICU.
      She will be 11 this coming May.

  24. irene on February 18, 2014 at 8:26 pm

    its hard to share your time in nicu im a nanna of twins born sept 2013 at 23 weeks baby boy died at 10 days our baby girl came home after 3 months still on oxygen but she is doing great she,s my angel and spoilt rotten god bless you and you little man for sharing your story your never alone xxx

  25. karen on February 18, 2014 at 9:14 pm

    I had a son born at 26 weeks in the nicu for 18 days. He passed away. The following year I had another son born at 24 weeks. He died about an hour after birth. I know what they all have went thru. My first son was born at 35 weeks and was in hosp. For 18 days..we brought him home..He is now 22 yrs old. Bless all of you that have to go thru this.

  26. Lauren Thomas on February 18, 2014 at 10:21 pm

    It’s amazing how each nicu momma has a different story,different situation,different outcome, and yet they are all the same. I am a new nicu mommy. My sweet Ella was born at 24 wks on January 26,2014. We are approaching our 4th week in the nicu. It seems like yesterday we began our journey. From the dead still silence in the delivery room to the constant singing of the alarms. The days we don’t want to see any visitors or answer any phone calls. The days we just want to grab them and hold them and just cry. We have a long road ahead of us still but I’m thankful to know that others have been here and it’s not just me and that once we go home were gonna be okay.

  27. Paula Walker on February 18, 2014 at 10:30 pm

    Thank you for creating this. I had a 26 weeker almost 18 years ago. He struggled but after 18 more weeks in the NICU and a major surgery, we brought him home. The nurses were some of the greatest people I have ever met and they were my lifeline back them. My son has grown into a wonderful person. He will be graduating high school this summer and will be off to college. It was hard to see such a tiny perfectly formed baby with tubes and wires all over him. I loved reading your story and it brought back so many memories of our first weeks of uncertainty with him. Thank you for creating this page. Enjoy your son. They grow up too fast. I am constantly amazed when I look at him playing in his high school band and think back to his first days of life with his breathing problems. He has overcome so much and I am so thankful that he now has lung capacity to play different musical instruments. His opportunities are amazing. He spent part of his summer two years ago traveling in Europe playing tuba for a honor band and recently played in this year’s Orange Bowl Game in Miami. He is my miracle child.

  28. Anastasia on February 18, 2014 at 11:33 pm

    My twin boys were born at 34 weeks. They were in the NICU during 4 of the 5 days I was in the hospital. They came into my room the night before I was to go home and we thought they would be coming home with us but the next morning the nurses told us they would be going back to the NICU and I would have to go home. I was left in the NICU waiting room with a family that seemed to have everybody there. I was so wrapped up in worrying about seeing my sons that it didn’t even cross my mind that there were other people there. After some time the mom and dad came out and said “They are letting any family go back there.” There was screaming and crying and then I realized what was happening. Luckily my sons were only in the NICU for eleven days, the longest of my life and most times I don’t feel like a NICU mom because they were in there for such a short amount of time. I have never forgotten that family and often pray for them.

  29. Jacob Kiper on February 19, 2014 at 7:05 am

    I’m a NICU dad…and I appreciate your blog. I have twin boys who spent 4.5 months in NICU. They were born at 23 weeks & 5 days. The NICU rollercoaster was terrifying. Unless someone has been there, they can’t understand. My boys are now 22 months old and healthy as can be…yet we still worry all the time.

    • Kathryn on February 21, 2014 at 8:57 pm

      Thank you, so very much. I’m so happy to hear your boys are growing and thriving! I’m not sure that NICU worry every fully leaves 😉

  30. Sarah on February 19, 2014 at 7:56 am

    Oh man, you definitely hit the nail on the head with this post! Thank you for sharing your heart with us. Mine was in the NICU for 25 days and it was agonizing. I so relate to the endless quizzing of the nurses on the phone, the strong smell of the antibacterial soap, the feeling like you need to be in two places at once with your children at home and your baby in the hospital, crying and feeling like you’re missing out no matter where you are. So well said!

  31. MariEllynn Milligan on February 19, 2014 at 8:19 am

    Thank u for shareing your story . You really dont know how many people has been in that place . We were in the NICU with my daughter for 58 days . I had her at 28 weeks . She was 1lb 13 oz and 14 1/2 iches long . That was the scarest time in my life . She was my first born and i had been toldby 5 docters i couldnt have kids . I wasnt able to see her for 3 days cause they almostlost us both. When i seen that sweet little baby and she was mine and she was fighting so hard i knew i was going to what ever i had to to keep her safe. She will be 2 in june and is a big sister to a 6 month old . When the docters told us it wasnt looking good GOD SHOWED UP AND SHOWED OUT . When we left the docters and nurses side she eas a merical . I thank my god every day for my mericals . He is the reason i have my two little girls .

  32. Tiffany Hebert on February 19, 2014 at 11:14 am

    Well this story is sorta like mine. I have fought for my own life now for 25 years. I have had my moments of doubt, frustration, sickness, health and surgeries. It’s important to remember while doctors do know a lot of information about health issues and such, they don’t know everything. For example in my case of complexity, my doctors told my parents that while I was 10 months old and suffering that they should just let me go and end my suffering. They couldn’t see past that moment or even past my first two years. They did see me fighting for what looked like a losing battle. But I know God saw it differently and so did my parents who prayed for me everyday and every night. God saw it has a victory not a defeat. God used it to be glory to Himself and showed His healing and strength in small helpless baby who wanted to live. God gave me a life and a purpose that no one can take away. Praise be to God for what He has done, is doing and will do in the future. You’ve been a blessing, and for all the nice moms and dads out there. From the babies unable to speak yet we say thanks for loving us and giving us a fighting chance.

  33. amber on February 19, 2014 at 6:19 pm

    Thanks for that lovely look into the nicu ride. All four of my babies are nicu grads. I remember how guilty I felt just taking the time to shower or eat or even sleep. I still get a little crazy when I hear the steady beep of monitors or smell iodine scrub. But I’m happy to say I survived and got four beautiful girls out of it

  34. melissa on March 18, 2014 at 8:02 pm

    Thank you for this post. I sit here, just finishing a middle of the night feeding for my little boy. This post rang all too true for me. After being on bed rest in the hospital for 2 weeks, my son was born at 27 weeks on 2 December 2013. He was 2 lbs 4 oz. We spent 9 weeks in the NICU before he could come home. It was absolutely the most terrifying, difficult abd humbling experience I have ever had in my life. To top it all off, we are a military family, stationed overseas, and the doctors and nurses spoke little to no English. Isolation…. Loneliness…. Helplessness… All of that times a hundred because we could not communicate with the staff who was taking care of him.

    Now, he has been home for 6 weeks. He is 2 weeks old, adjusted age. And other than being small, you would never imagine we had that experience with him. He is our little chunk, gaining weight and being healthy.

    It’s difficult not to feel guilty. It’s easy to ask why me. To blame yourself for not being able to carry your baby longer. But God has a reason for everything. I may never know the answer to why we experienced this, on foreign grounds. But I do know I look at my little boy, and see the miracle he is. It brings me that much more joy to be his mama.

    My heart goes out to every parent of a NICU baby, regardless of their reason or duration. We are a unique family, bonded by our experiences. Bless you all.

    • Kathryn on March 18, 2014 at 9:18 pm

      Melissa, thank YOU for sharing your story here. I’m honored the letter touched you. I hope you’re stateside soon and that your baby continues to grow and flourish!

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  37. Amy on October 13, 2015 at 8:42 pm

    Thank you for sharing your story. As a new NICU mom, it has been a learning experience. Every word you typed in this is nothing but 100% accurate. I was just taking a hot shower and it was nice that I could cry and let the water wash the tears away without anyone knowing. But while taking the shower, so much of what I thought, you said. The only other thing I thought about is that sometimes it’s ok to feel sorry for ourselves, just for a minute. We are always putting everyone first and so concerned about everyone else’s emotions…but we need a moment for ourselves. It has been so comforting to know that all the pain, joy, stress and other emotions are normal. If I didn’t feel this way, then there would be something seriously wrong with me. Thank you again for this post.

    • Kathryn on October 14, 2015 at 8:26 am

      Tears in the shower are always healing. It is absolutely okay to feel sorry for yourself – not forever, but sometimes. May your NICU journey be short and your tears be few. Solidarity.

  38. Deb on November 17, 2016 at 3:33 pm

    Beautifully written. I was a NICU Momma 14 years ago and so much of this rings true. Love to all the NICU Mommas and the awesome NICU nurses around the world.

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