nicu perspective

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You’d think I’d know what to say to a mom whose baby is in the NICU because I’ve been there, but recently hearing that my cousin’s newborn was diagnosed with a serious health condition didn’t make me feel like an expert, It made me feel like a puddle.

How can I even begin to help someone going through such a tough time?

Here is my attempt to shine a little love light into that miraculous, terrifying baby-saving place, which can feel so dark to a mother who just wants to bring her child home.

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Dear mama whose baby is stuck in the hospital,

I am indescribably sorry to hear you and your child are going through this, what a shock it must be. I can relate, but what can I say, except to express that I understand a little bit of what you’re experiencing since I was in similar shoes, when Dylan was born. I didn’t know what the outcome would be, either. His diagnosis was scary too. The situation rocked my world to say the least.

We got lucky. Our prayers were answered in the way we wanted, and I’ll storm the heavens hoping that yours are too. I will grieve with you if they aren’t, although I know the bulk of the burden will fall squarely on the shoulders of your precious family, and I know you feel the heaviness of that reality in every fiber of your being.

I wish I could offer more, but I think all I can do is tell you my story and hope it lights your way, like the experiences of other mothers did for me, when I was in your shoes. I hope it fills you with hope, faith and courage to get through.

In 2008, while I was pregnant with our second son and still in new mommy mode, fretting over the tiniest scratch on my 1-year-old, an ultrasound revealed that our new baby had a blockage in his intestine, which indicated a host of other potential health problems. He would need surgery within hours of being born, for starters.

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This was beyond horrifying to me. How is it even possible to remove several inches of intestines on a 7 pound baby? How could this happen to my son, who I’d done everything to nurture in the womb?

It was just one of those things. An unexplainable curveball life sent us.

Since you’re living something similar right now, I’ll spare you the details and share a few gifts of wisdom I learned through our ordeal, which I hope can jump through the computer screen into your heart like medicine for your soul, to bolster you with strength, courage, and hope for this beautiful (yes I mean gorgeous albeit painful) journey.

A new definition of motherhood. In case you feel helpless because you are unable to care for your baby or prevent her from being invasively poked, prodded and medicated beyond what you would consider acceptable in other circumstances, I want to remind you that your presence matters, your prayers matter and your love matters – being a mother matters, even (maybe especially) in these unique circumstances.

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Trust in how resilient your baby is. They don’t look it, I know. Little ones are the picture of vulnerability when they’re hooked up to medical equipment, yet I’ve seen firsthand how capable of bouncing back they are. When you’re tempted to worry, whisper into your baby’s ear how strong she is, and imagine you are planting a seed of courage in her – you’ll both get through this.

Permission to break down. Seriously, this is no time to stuff your emotions. Postpartum hormones, facing your deepest fears, watching your child suffer, needing to tear yourself reluctantly away to get some sleep … the NICU can feel like a nightmare. Allow yourself to grieve what you’d hoped your baby’s introduction to the world would be.

A realization of how lucky you are. I know, the hospital is the last place you want to be, but taking a moment to imagine a world without surgeons, caring nurses and technology may lift your spirits a little – things could be worse.

A sense of your own strength. Through this experience, you will learn to let go of control and endure, those are gifts you’ll take with you long after your days in the hospital with your child. The NICU is kind of like mama bootcamp, where we can learn skills to help through the long haul of parenting and life.

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A realization that you are not alone. This may seem like an absurd experience to be going through when everyone seems to have healthy babies with no problem, but you are soooo not alone. When you start reaching out, you’ll hear stories of other children, who have faced health emergencies at birth. Try creating a carepage, to receive support or googling your child’s condition, you’re sure to find a mama blog or chat-room that resonates.

Courage to advocate for your child. Yes, the doctors are brilliant and can be intimidating, but don’t forget you have a right to research, get second opinions and ask a lot of questions. You know your child best, so you may pick up on something even a medical professional cannot – it’s better to be wrong, than forever regret not speaking up.

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Openness to miracles. Listen to the doctors and respect what they say, of course. But don’t forget to open up to receiving the peace that surpasses understanding or better-than-expected test results. I encourage you to lean on your faith and open up to being surprised by how powerfully God can work in the NICU, surprising even doctors and nurses – I’ve seen it happen so many times, I think it helps to stay open to possibilities.

Awe and wonder in your baby’s new life. In spite of the circumstances, I hope you can experience joy of these first few weeks with your child. Try to relish every milestone, even if it would seem kind of depressing in other circumstances, like being able to transfer her onto Tylenol instead of morphine or being able to remove one (out of five) tubes, every step towards home deserves to be celebrated. My personal favorite was my son’s first sponge bath since finally we could do something that seemed to relax him. I’ll never forget those precious moments, even though we had to be really careful not to tangle his cords.

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Realization that you need to step away sometimes. Don’t fool yourself! Even moms of babies, who are sick need a break to get rest and food. I hope you take care of yourself through this difficult time – it’s hard, but necessary.

A deep sense of meaning and purpose. On this planet, none of us can control the hand we are dealt, just how we respond to it; nowhere is that truth more apparent than in the NICU. This time of vulnerability can open you to the deeper questions of life and mysteries of faith. Think of it as a right of passage or opportunity to grow spiritually – realizing that good can come even out of terrible situations, in the long run can help you keep your situation in perspective.

In our case, thankfully Dylan’s surgery went well, and other concerns doctors expected did not come into fruition, so we brought him home after 9 days, instead of the expected 6-8 weeks. I’ll never forget the joy of leaving the hospital, we were grateful beyond belief.

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At the same time, my heart broke to leave families behind, who were still fighting for their kids.

I hope that when you tell your story someday, it is of a baby who had a rough start but a great life, like our Dylan. In fact, I wish I could promise you that it will be.

I unfortunately can’t, but I can honestly say I’ve seen the beauty of families, who learn to live fully in challenging situations and accept losses with grace and dignity, which inspires the best in everyone around them. I’ve learned to trust that God has a bigger plan than we could imagine on our own.

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No matter what the outcome is, I believe every NICU experience can be a victory of strength, faith, hope, and all the invisible important stuff that binds us with our children with threads of love, which can never be broken.

God bless you through this journey! I’d love to hear about what you’re going through and provide encouragement.

Sincerely, another nicu mom

Moms who have been there, what wisdom do you want to share from the NICU? How is your child doing today? Please feel free to share this article with anyone who has been there done that or is stuck in the hospital right now, I hope it can provide some comfort.

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3 Responses to nicu perspective

  1. Tina November 19, 2014 at 10:05 pm #

    When my 3rd son was born, I thought I knew what to expect. I was an expert…I’d done this twice. You go in, pop out a kid, stay for about 2 days, and take the baby home. When he was 7 hours old, a nurse said, we need to go check something. It turned out that his oxygen levels were low. Here I was, at the hospital alone with my baby, and they were saying things like NICU, ventilating, and I was trying to listen and not panic. He was having such a hard time breathing, he tore a hole in his lung. Well, two holes. Seeing my tiny little guy, lying there with what looked like the top of a cake stand over his head, giving him oxygen to heal, not being able to feed him or hold him? I was devastated. Going home two days later without my baby in my arms was one of the hardest things ever. Trying to be present for my two preschoolers when I just wanted to be at the hospital with my baby…but when I was at the hospital, I wanted to be home with my other two. It was the longest 10 days of my entire life. I did learn to celebrate the small things. When they removed the IV, the nasal canula. When I arrived at the hospital to see him and he was tucked on the nurse’s shoulder as she typed on the computer. I will tell you that the nurses can’t replace you, but they are there because they LOVE babies. I had nurses come back on their day off and tell me that they tried to get the other nurse to let them have Caleb, but they wouldn’t give him up. They didn’t care if I called at 3 am just to see how he was doing. When I finally got him home, I almost missed all the monitors. I mean, how was I supposed to know if he was doing OK without the monitor going off if his oxygen went wonky?
    And today? That little guy who was hooked up to all those tubes and machines is a ridiculously active 4 year old. He bounces everywhere, talks constantly, and has the most vivid imagination. You’d never know that his start had been so difficult. I hope that your cousin’s baby has similar results.

    • ngant2013 November 20, 2014 at 12:52 pm #

      Tina, thank you so much for sharing your story with us. Love:) And giggling about your “ridiculously active 4 year old” – wonderful!!!

  2. Jillien August 1, 2016 at 5:13 am #

    My name is Jillien and I am a previous NICU mom of twins and a NICU nurse (for 15 years). Would love if y’all would check out my blog at http://www.nutnbutlove4mykids.com! Providing information, advice and support. Message me or post a comment. Would love to help! ?

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