this is motherhood {too}: lessons learned on a 13 month NICU journey (and beyond).

November 1, 2013, Michaela Evanow, 4 Comments
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Being a new mom is an overwhelming experience—so much joy mixed with hormone levels that are all over the map, and of course the occasional emotional break down.  The most common struggles you hear from new mamas are:

“My baby cries all the time, or I think they have colic!”

“I am absolutely exhausted and hardly getting any sleep!”

“My baby always wants to be held and cries if I put them down, I can’t get any rest or anything done around the house!”

“All this kid does is eat and poop!”

If you’re a mother, I am sure most of you can relate to at least one if not all of these at some point in your mothering journey.

My journey looked a little different. My first child Asher was born at 32 weeks–8 weeks premature.  He was very sick with severely underdeveloped lungs, a few other “minor” health problems, and a condition called Gastroschisis.  Gastroschisis is a defect located at the belly button where the abdomen doesn’t close properly leaving a hole where the belly button should be.  In short this caused his insides to be on the outside.  He was extremely sick and spend the first 13.5 months in the neonatal intensive care unit.

asherandcourt

From the time my son was just minutes old until he was about 10 weeks old, he was on a ventilator. This made it impossible for him to make noise as there was a tube down his throat helping him breathe.  I dreamed of hearing him cry.  His face would look distressed and he’d be crying at times, but no noise came out.  Oh, how I wished he could have a good cry.

Getting to hold him was a big deal.  He was too sick to be handled much so we were only allowed one cuddle a day.  My husband and I would take turns holding him every other day.  And some days he was too sick to be held at all.  We so treasured our cuddles in those early days and wished we could hold him whenever we wanted and never had to put him back down.

We lost a lot of sleep, like new parents do, but the times we lost the most sleep in that first year, were the nights we left the hospital crying out to God. And praying, praying that he would make it through the night.  I struggled to fall asleep, not wanting to miss a phone call, or hear the words, “This is it, you need to come back to the hospital.”
For the first month or two he was only given IV nutrition and wasn’t fed through his GI tract at all. I begged and pleaded for them to let me feed him my breast milk, that I had been faithfully pumping those first 3-4 months.  He never got a drop.  I was never able to breastfeed him.
We prayed for poop. It would have been a sign that his bowels had been miraculously healed.  Each diaper I changed, I would pray for a big stinky poop.

I don’t share this with you to illicit pity or cause you to feel sorry for me or my son.  Believe me, that is the last thing I desire in sharing my story.

I am blessed.  I still have some pretty brutal days, just like the next mom but I do not feel sorry for myself.  And you shouldn’t either.

You see, having spent as much time as I have in the hospital with my son (we’ve estimated around 2 years, 1/3 of his life so far) you come to realize two things.

1) You are not the only family facing a brutal situation.
2) There is always someone in a worse situation than you.

I have to be completely honest here…I have often found myself wondering what a lot of moms with “typically-developing” or healthy kids are complaining about all the time (especially now that I have had one myself!)

I am not saying that mothering healthy kids is easy – it is absolutely one of the toughest jobs out there.  My goal in writing this is to share the perspective I have gained from all my time in the hospital.  My hope is that the next time you are faced with one of those challenging times as a mother, you will recall this and stop to appreciate all that you do have.

My kid is a miracle.  But, so is yours.  Your child may not have experienced a miraculous healing like mine has, but that doesn’t make them any less of a miracle.  When you stop to think of all that needs to happen for a child to even be conceived, then formed in their mother’s womb, and then birthed…well  I can’t think of a better word other than miracle. They are a gift.  Even when they are acting like a little booger and make you want to run and hide or pull your hair out and cry!

A lot of us (I say us because I have been known to do this myself) feel the need to vent or tell our sob story of our horrendous day/week/year in a Facebook status.  I am not saying this is wrong, but I would like to pose a challenge to us all.  What if on those crazy days when we feel like putting up one of “those posts” we choose to do what I call “flip It”?  This is something that was taught to me and has helped me learn to have an attitude of gratefulness and thanksgiving despite what may be going on in my life.

A positive attitude is not something that comes naturally, it is a choice we must make.  Every day, each moment.

I know I want my kids to learn how to be grateful, strong, positive and of course, not be whiny babies.  The best way for them to learn this is through my example.  Our children are super sensitive and pick up on what’s going on in our hearts.  If we have an attitude of “life is so hard” and “I can’t do this!” , our kids see that and will take on that attitude as well. 
Not only will your thanksgiving affect your heart and how you parent, but others will see your positive attitude, despite your difficult circumstances and be encouraged and inspired.  Its a win-win!
By Courtney; edited by Michaela.

4 Comments

  • Reply Sadia December 18, 2013 at 3:20 PM

    This post really spoke to me. I, too, had preemies (33 weeks), but they were feeder growers with extremely minor medical issues. I felt such guilt, leaving the NICU with my second twin while nearly all the babies who’d been there when mine were born were still there as we left. Would you mind sharing your story on the parenting linkup I host (http://hdydi.com/2013/12/16/parenting-link-party-3/#linkylist)? I think more people need to read it. You just do a great job of balancing the positive with the truly heartbreaking reality of having a special needs child

  • Reply Jennifer Degl November 2, 2013 at 11:47 AM

    You are an amazing mom and writer! You speak words that might as well have come from my mouth! Good luck to you and your family! My daughter Joy was born at 23 weeks last year. Due to modern medicine and prayers she is doing great today. I hemorrhaged at 17 weeks for the first of 4 times because of 100% placenta previa, which turned into placenta accreta (which I believe was caused by 3 prior c-sections). After she came home from 121 days in the NICU, I wrote a memoir called “From Hope To Joy” about my life-threatening
 pregnancy and my daughter’s 4 months in the NICU (with my 3 young sons at 
home), which is now available on both the Amazon and Barns&Noble websites. It was quite a roller 
coaster that I am certain some of you have been on or are currently riding on. My mission is to provide hope to women struggling with
 high-risk pregnancies, encourage expectant mothers to educate themselves before 
electing cesarean deliveries, provide families of premature babies a realistic 
look at what lies ahead in their NICU journey, and show that miracles can 
happen, and hope can turn into joy.
 Please see my website http://www.micropreemie.net and http://www.facebook.com/jenniferdegl
    
Thank you.

  • Reply Vangel November 1, 2013 at 10:12 PM

    Powerful words that call each of us higher. Thank you Court (and Michaela) for sharing your journey of faith with us…reminding us as mommas, who we are designed to be! Thank you for facing fear in the face (most of our worst nightmares) and choosing love and joy and peace. You both inspire me everyday, to be thankful, so thankful. I love u.

  • Reply Kali November 1, 2013 at 8:01 PM

    It’s always such a privilege to hear more of your experience with Asher Courtney, and your decision to always look for the best. It’s been such an honour to journey with your family! Thanks Michaela for sharing these stories, they are so rich!

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