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Lessons in Prematurity

As prematurity awareness month comes to a close at the end of the week, I wanted to share one last post before the holidays hit high gear. And, if you read nothing else of this post, scroll to the bottom. Trust me.

About a month ago, I reached out to several mommas and asked them lots of questions about their NICU stay with their preemie or ill baby. For some, the NICU stay was a handful of days, for others it was several months. Their crosses have been heavy, but their wisdom is so great. I’ve written before about my initial fears of our NICU stay and Luke’s many diagnoses, the glimmers of hope we received along the way and the life lessons in his journey. The truth is? Prematurity and a NICU stay never really leave you. They permanently alter your lens on life.

At least they did mine.

As NICU moms, we all have hard days. But the hardest ones? Those are the ones you remember for a lifetime.

[it] was the day they told us that our baby was in danger of dying. The doctor in charge told my husband that she was not responding well to their interventions and that she might have to be flown to the children’s hospital. He was told that there was a chance that she might not make it. I will never forget seeing my stoic husband break down in tears when he came to tell me. – Melody

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Post-NICU, the hardest time was when she got RSV at 6 weeks, I ended up having to call 911 and was taken by ambulance with her to the hospital. My husband was unreachable and my other kids were scared since I was very shaken up over her difficulty breathing. She ended up being admitted for several days. Having an infant in the hospital is awful. – Ellen

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I arrived at the NICU only about an hour behind my husband and Johnny.  We were immediately inundated with tons of information and medical jargon that made no sense at all. We had no idea what was going on, what kind of surgeries Johnny would need, or what his quality of life would be like as he grew up. I couldn’t stop thinking that there was no way I was going to make it through all of this. It really felt like my world was ending. – Anna

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It had been a few days since Bella’s birth. The other women, who came into labor the same day I did, had all been released to go home with their babies. I knew my time allowed in the hospital room was at an end and I’d have to go home without Bella. I was overwhelmed with sorrow that I was separated from her. She was no longer within me yet, not in my arms either. Knowing I’d have to walk out of the hospital without her was the worst moment of our stay. – Bobbi

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 There were several “worst” days in the NICU – if that’s even fair to say – but the day James’ feeding therapist told me she didn’t think it was likely that James would ever be able to eat was incredibly difficult. I felt like she had just taken away my last piece of normal and it was more than I could take.  – Bonnie

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But, then God gives you glimmers of hope. You willingly go into the battlefield every morning, not knowing what to expect. In the midst of crazy, God would often deliver, as if to say, “I got this.”

A surprising blessing was that the mother of the jaundiced twins in the NICU (who delivered on the same day) was a Catholic homeschooling mother. I noticed her one day reading a book about St. Gianna Molla. That fellowship was so critical for both of us at that time. – Melody

I remember feeling like I wasn’t allowed to hold my baby because of all the wires and tubes hooked up to him. But just minutes after we first got to the NICU our nurse asked me if I wanted to do some skin to skin time with him. Being able to hold my baby against my chest – the way we were supposed to be – was the best medicine anyone could have given me. – Anna

When I was no longer allowed to stay in one of the birthing room, [one of our NICU nurses] literally searched the hospital for an empty bed where I could get a few hours of sleep before returning to the NICU with Bella. Technically, this was not allowed and once they found out what she was doing, they put a stop to it and told me I had to go home and come back in the morning. Even so, I was incredibly grateful to that nurse for those couple of extra nights I could sleep at the hospital and be close to Bella. –Bobbi

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Hindsight, time, prayer and perspective. Those were all things that helped me heal and see just how strong I could be and how awesome our God is. While I never wished a NICU stay on anyone, I do know that having someone who “gets it” and who understands just how hard it is, can be so invaluable. From one preemie mom to another, here’s some advice. My best? Put on your big girl meshy panties when necessary and advocate for your baby.

Don’t blame yourself, or try to figure out what you could have done differently, it is a waste of energy during this time. –Allison

Accept help, don’t try to do it all yourself. –Ellen

Pump, even though you don’t feel like it, it will pay off later. Sleep as often as you can. Ask lots of questions, there’s no such thing as too many questions, or a stupid question. If you have the opportunity to go home and shower, do it! –Anna

Know that this is only temporary. –Bobbi

If you don’t like any of the nurses ask the head nurse to not assign them to care for your baby. –Bonnie

Enter into the care of your child in whatever way you can. If you cannot hold your baby, learn as much as you can, develop relationships with the staff, spend your time in prayer, sit by the isolette and admire your child. There are times when the only thing you are permitted to do is to pray… let it be a powerful gift to your family and child. –Melody

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When you’re living through hell, nobody really stops to take notes. Am I right? You just survive. But when asked these women to share, in three words or less, their biggest NICU takeaway? Well, these are just downright awesome.

Trust IN God! – Allison
Pray. Hope. Love. – Bonnie
In God’s time. – Bobbi
Together. We. Can. – Anna
Hope and pray. – Ellen
Suffering emboldens faith. – Melody
Love conquers all. – Kathryn

Six moms share their greatest lessons of prematurity, how it shaped them and how they overcome the struggle.

 Special thanks to Allison, Anna, Bonnie, Bobbi, Ellen and Melody for sharing their hearts with all of you! Mwah!

7 Comments

  1. Nicole on November 26, 2014 at 8:17 am

    Beautifully written by all of you.

    Not being a NICU survivor, I still so much appreciate these posts. Especially during this Thanksgiving week and as we enter the holiday season, I think that your words (and the words of these other brave NICU moms) will bring comfort and peace to someone else in the situation or on the other side of it. As you say, “Power to the Preemies!”

    Happy Thanksgiving to you and your entire family! Thank you for sharing all that you do.

  2. Michelle F. on November 26, 2014 at 8:56 am

    Thanks for writing. We’ve done the NICU and PICU. Any “good” memories come from fabulous nurses. My advice would be to always try to build relationships with these people because they are the gatekeepers to everything. I’ll never forget the nurse who ordered an adult bed in the PICU so my immobilized toddler could be held by me and touched by someone, and then later bought him a Mary Poppins DVD. I also remember the nurse who put the IV in my baby’s scalp, instead of his hand, so he could be free to nurse well and then handmade him a little beaded bracelet on her off day. Both were “bending the rules” in favor of my children. Good nurses are forever my heroes.

  3. Ellen That Chic Mom on November 26, 2014 at 9:48 am

    Thanks for sharing this Kathryn such wisdom and beauty in the stories and sweet babies!

  4. Verdina on November 26, 2014 at 9:54 am

    Thanks so much for sharing your beautiful stories of love!

    I feel like I’ve lived through the NICU vicariously through you; but I know I can never really feel the pain, anxiety, fear, etc. and the triumph.

    God bless you… Happy Thanksgiving to you and your beautiful family!

    V

  5. Jenny on November 26, 2014 at 9:59 am

    The words shared and the stories here are so powerful. I have never experienced having a child in the NICU and reading these brought me to tears. I do think one of the hardest things to do would be to walk out of the hospital without my baby.

  6. Gina on November 26, 2014 at 10:43 am

    My heart goes out to all moms who have had infants in the NICU! I can’t even imagine. Thank you for sharing all these stories so that other moms have support and encouragement from your experiences, and so that parents who haven’t had a child in NICU can understand a tiny bit and pray for you all!

  7. Veronica on November 27, 2014 at 12:11 am

    What wonderful stories you and the other preemie moms have shared! Having a medically fragile infant certainly does alter your lens on life. Thank you for holding my hand through our journey!! God certainly knows how to bring people together.

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