A Mother’s Approach to the NICU

The Gift of Life from time to time has guest bloggers and real life stories.  Today we have a story by Danielle, the mom of a preemie.  Take a moment to read Danielle’s journey through the preterm birth of her baby in her own words.

My story. I’ve been asked a time or two to write it, but find it really difficult to think about that time. Those times. Two of them. No, my story isn’t as bad as some and my kids are doing quite well, but it still leaves its mark. Six years on and I still wonder if I will ever approach birthday time without flashbacks of all the beeping of monitors, frantic wishes for another breath, tears at yet another bad day.

I would have been fine without kids. I had been told by various medical professionals that pregnancy was unlikely anyway. Yet, there I was, staring at two pink lines. A few weeks later, the doctor said “it isn’t viable.” He told us to go home and wait for a miscarriage. That was how we spent Christmas and New Year’s. At 27 weeks (after he admitted it “might” be viable), he told me I had to go to the hospital because my blood pressure was too high. A few days later, a nurse sheepishly handed me a pamphlet about living wills and scurried away. I found out that the doctor told my husband I had a 50% chance of surviving and he wouldn’t even put a number on our daughter. Next month she will be 6.

You know all those posts about bonding with your baby and oh-so-sweet labor stories? Ya, none of that. I didn’t want to see her. She looked like an alien monkey. I didn’t want to get out of bed. It hurt. It physically hurt and the guilt of not keeping her healthy and safe emotionally hurt. The poor nurse – I was so angry at yet another stick of my 1lb 12oz baby’s poor, bruised foot. The surgeon hovered and threw out acronyms like NEC. Yet, 56 days later Willow passed her car seat test and came home.

She rushed through milestones like she rushed through pregnancy. Today, she struggles a bit with ADHD and SPD, but races through each day with more exuberance than I know how to handle. She is my sunshine.

My second pregnancy lasted 32 weeks. I think stress played a big factor in that one. Ocean made it to 4lbs 7oz and only 3 weeks in the NICU. We felt like pros, waving away explanations of the process. Still, the hour drive each way, every day took its toll on both our strength and our finances. Ocean has a dairy allergy, is more susceptible to seasonal allergy issues, and has some anxiety-related issues, but nothing major. She will be 4 in July.

We are lucky. My daughters lived and so did I. They didn’t come home with tubes or machines or scars from surgeries. Yet, I still check every night to see if they are breathing. I still worry and Google every learning issue. I wonder how they will do through their own reproductive journey. They are beautiful and happy. So why does is it so painful to remember? Why is it so hard to crochet preemie hats without crying? PTSD, maybe, although I feel selfish for my feelings considering some friends had preemies who didn’t make it.

The lesson here is this: no matter how much time you have to spend “parenting” and no matter someone else’s experience, you are still you with feelings and experiences that deserve recognition. There was no time for that in the NICU or when we brought the tiny babies home. Even now, a minute to complete a thought is so rare. Only recently – almost 6 years after – did I start to remember more of the stress. Only with recognition, support, and patience was I able to acknowledge all the pain, anger, depression, and fear and morph into a healthier, more peaceful individual. A better parent, a better spouse, a better me. I read posts and comments by older moms of preemies now grown and they talk about it like it was nothing, completely over-shadowed by a lifetime of great memories. I made it this far. So will you.

 

Visit The Gift of Life page www.thegiftoflife27.org

National Infertility Week: Hello from the other side

The Gift of Life Welcomes guest blogger Jen Labriola  sharing her story in with us during Infertility Awareness Week.

I’m one of the lucky ones to not only survive a troublesome pregnancy that resulted in premature twins born at 28 weeks but also enduring eight years of infertility. At face value, it seems I was dealt a bad hand along the lines of fertility. Coming from a family of accidental pregnancies, my Fertile Myrtle mother who with contraceptive onboard still got pregnant with me, you’d think I’d inherit that trait.

Nope! Infertility isn’t inherited, it just happens. Just like a premature baby, sometimes, things just happen. It’s how you deal with these little setbacks that define your success and outlook. As I dealt with my twins in the NICU, with positivity, I dealt with my infertility the same way.

I’m a veteran in infertility and have been through nearly every procedure. I’ve shoved needles into myself for IVF, I’ve curled my fingers around the edge of a table as the searing pain of yet another test to see what was going on in my uterus, and I’ve prayed hard after procedures. I would hold a straight face with bad news, and then bravely ask, “Okay, what’s next?” I’ve researched what 0% APR credit cards I could use to pay for the procedures because my insurance didn’t cover infertility.  I’d spent enough money to buy two cars.

While many of my friends, who also are infertile, would quit, I decided I would do everything in my power to get pregnant and if after three IVF tries, I didn’t get pregnant, I would quit. So after my first real IVF, I couldn’t wait the two weeks and took a pregnancy test four days before my scheduled blood test at the IVF clinic. I took the pregnancy test that morning, it showed one lowly line (negative) and I tossed it in the trash. That same day, after work, I was complaining to my husband about how I’d never get pregnant and how much money we are wasting, in a fit, I dug the test from the garbage to show my husband. In that, I noticed a second line, a faint second positive line. I was pregnant.

So, to those who are going through infertility, my only advice is to be positive. I tried not to wallow in the negative, bad news. My first words after bad news were always, “what’s next?” I also researched everything, I read message boards, and I became my own expert in the field. Doctors, nurses and the like are not the end-all in what they say. In exchange, you must own your own journey. You must make the decisions, the ideas and not depend on the medical field wholly. This goes with anything medical; I did the same research for my troublesome pregnancy and NICU babies.

Positivity is what has always been and is my goal; I spoke in terms of when I’d get pregnant and not if I’d get pregnant. In terms of my troublesome pregnancy, I had to get to 28 weeks for my babies to be viable, so I told the doctor I’d get to 28 weeks, it was my goal, and it was everything. I was positive, even in the negative news, I followed my intuition. I just knew things would work out regardless of my doctor’s ideas on what could happen. Could is the key word here because no one knows what the outcome will be. So go by your gut feeling, you know deep inside the answers if you listen to your intuition.

So in this week of awareness, this epidemic of infertility that finally is coming out from behind the curtain, I am in the hopes that those putting up the good fight for infertility insurance coverage, for men’s infertility issues and a better understanding of this hugely growing need, continue to make traction. Those dealing with, succeeding or moving on from, infertility issues, it undoubtedly leaves a mark on your life. It’s up to you to make such an emotional experience as something that was part of your life or as something that has defined your life.

For me, this is my past; it’s not part of my definition of me anymore. My twins, my own determination, my own success is defined in the positivity of my future. Still, always optimistic, I am cheering for you, you the infertile, you the premature mother, and essentially you.

Thank you, Jen, for sharing your story with The Gift of Life.  Jen is a graphics artist and dedicates her time to the Gift of Life doing graphics and being a preemie mentor to other preemie moms!

Visit Jen’s profile  https://thegiftoflife27.org/preemie-mentors/

The Gift of Life

For the First Time

Do you ever wonder about your baby and when he or she will be born? Do you think about that special moment when you get to hold the baby for the very first time?  It is the most amazing feeling.  The smell of a new baby, the cuddles, the smiles when they are sleeping, the coos and of course there are those cries of hunger pains, wet diaper, gas or just hold me.  But oh such wonderful feelings.  As I looked around this weekend while I was out with my family at an October festival at all the new babies and their mommies, I started to remember back to when I had my son Kaleb.

I longed for the day that I could hold him and see him smile, coo and yes even cry for something that he needed and Mommy could supply.  That day came when I had Kaleb, except he was born unexpectedly, 13 weeks early.  He was taken from me and I never saw him until 2 days after he was born.  We were both in critical condition.  I mustered the strength amongst a painful vertical c-section, heavy pain medications, and uncertainty of life, to get to the NICU where my son lay in an isolette connected to what seemed like hundreds of wires.  What was happening I thought to myself.  I wanted to hold my baby, but he was much too fragile to do that.  I cried for hours as my husband comforted me and let me know that he will be okay, we just had to have faith and pray.

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Day after day, we made the journey to the NICU, even after I had gone home without my baby to see him fighting for his life.  One day, as I arrived, the nurse said to me, “are you ready to hold your baby?” I looked at her puzzled wondering if I heard her correctly.  She started to explain to me about something called Kangaroo therapy. She explained how the heartbeat, breath sounds and warmth of a mother, will help the baby feel like he is still in the womb hearing those comforting sounds and it helps them recover so much quicker.  I was excited but wondered how that would work.

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It took three staff to get this done, 2 nurses and a respiratory therapist.  The nurse was quite funny and asked me to go to the rest room first because once I started I was going to be there for as long as the baby would tolerate it.  The whole process took about 15 minutes to get the wires taped, the baby settled and off he went inside my button down shirt on my chest.  In an instant the nurse pointed to his monitor and how his blood pressure and heart rate stabilized.  His breathing was not so labored.  He stayed with me 45 minutes, they were so impressed.  I had finally held my son, wires and all.

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It was scary to hear all the beeping noises, but the nurses said if you relax, the baby will as well.  I had all sorts of thoughts fluttering in my mind.  As I sit here and remember that day,  I still get teary eyed because it is a moment that I will never forget.  Seven years ago today, I held my baby for the very first time 12 days after he was born.  Today he is a lively 7 yr old and he still snuggles with mommy.123-4899-2 123-4900-2

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The first time a mom of a preemie holds her baby is so special.  If you ever hear someone tell you that, take a moment, listen to them and send them hugs, love and prayers because that mom is rejoicing inside at the very first time she is holding her baby.

 

 

 

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