World Prematurity Day: Thoughts from a Preemie Mom

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You never go into a pregnancy thinking you may have a preemie, unless 1. You’ve already had one or 2. You were a preemie. I had neither of those things, so my first pregnancy I expected to be your happy, pregnant lady that bought all the cool stuff for her child. Well, then I woke up and realized that was someone else’s dream.

My husband and I had tried for several years with no luck to get pregnant so finally went into a fertility clinic to help us along our path to becoming a family. We started with Clomid, several rounds, to no avail and moved up the costly ladder to IUI, which also was unsuccessful and then onto full blown, OMG HOW MUCH? world of IVF. After several rounds of IVF and having already spent the unborn child’s first car and college tuition, I was now on my way to the happy pregnant lady image I so hoped for!

I swore I wasn’t pregnant and was terrified the entire time because my boobs never hurt, I never had morning sickness, I could eat anything and everything and nothing made me queasy. Apparently the test was positive, but until that first time I saw the heart beating, I had a hard time believing them. But alas, that little heart beat, and it was part of me and there was nothing I wasn’t going to do to keep this child safe!

Fast forward to week 18, going in to Maternal Fetal Medicine for my “Advanced Maternal Age” check-up…yep, first child in my early 40’s, but really? Advanced Maternal Age? So excited for another ultrasound until the tech makes a quick exit followed back in by one of the doctors…you know that is never good news.

Apparently my perfect little child has a REALLY large head and very short limbs and his cerebellum is much too small, but WAIT…there’s more! His ventricles are twice the size of normal which is not good news and I was introduced to the words Ventriculomegaly and Hydrocephalus. She needs us to go have a fetal MRI done to see if what she is seeing is correct…and congrats, it’s a BOY!

MRI shows the same results so we meet with a neurologist at Seattle Children’s, Dr. Dan Doherty, who is absolutely amazing…and my son (Spencer) will have Hydrocephalus and need a brain shunt when he is born. Unlike mom, college soccer is now probably out of the picture, but tennis is an option…I hate tennis.
So now I’m using Bing and Google and reading all about Ventriculomegaly and Hydrocephalus and scaring the crap out of myself and the happy pregnant woman is now glued to a computer screen bawling quite a bit at all that might happen. My husband turns off my computer, reminds me we’re still having a baby and we’ll give him the best life ever. Thank you honey, I’m the optimist in the family, I should have thought of that first…whining over, drive on…happy pregnant lady!

Being a full time military officer, I’m still working, just with my hubby helping to lace up my boots in the morning, and off I fly to Washington D.C. for a work trip where I am the lucky winner on the way home and win a free week of the Swine Flu! Seriously? I’m now stressed that I’ve made everything worse and what a horrible mother I already am. Two weeks later, I’m healthy again, and going in for my glucose test and Spencer is NOT kicking after drinking all that horrible sugar water…luckily my OB is amazing and listens to me and does some testing and sends me home to be on bed rest for the rest of the day. The first thing that next morning she calls and tells me I need to get checked into the hospital ASAP, I have Pre-Eclampsyia and it is not something you mess around with. I’m now 28 weeks 4 days pregnant and they say I’m not going home until Spencer arrives. It’s the week of Thanksgiving, and he’s not due until mid FEB…that’s a long bed rest for an active person!

Thanksgiving evening I send my husband home to take care of the dogs, I’m tired and bored and he doesn’t need to be bored with me. Luckily a friend who works in the hospital as an L&D Nurse stops by to say hello and I admit to her that I don’t feel great. “Define not great” she asks… like someone is shooting a nail gun down my right side. But don’t tell my nurse, I don’t want to seem like a wimp and I’m sure there are other mom’s who need them more. PSST…other moms, NOT a good time to be a hard butt military type when it comes to your kids.

She luckily goes and gets my nurse, they take my blood pressure, it’s about 210/130 (around there) when my norm is 95/52, apparently something is wrong. It seems my Pre-E has advanced into what’s called HELLP syndrome and my body is shutting down to die. My friend Kelley calls my husband and tells him to get to the hospital ASAP, something is happening. My doc was on duty and comes rushing in, they think my liver has ruptured, we may have less than an hour to live at this point…and I do mean we. Husband arrives just in time as we’re heading to the OR, it’s now the morning of Black Friday.

My OB is luckily like me and has a great sense of humor, and since it was an emergency c-section, they just gave me an epidural and went in immediately, I tried to get her to do some lipo for free (again…it’s Black Friday, work with me here) but no such luck. She did however deliver one beautiful and very alive 2lb 5oz little boy. I had a rocky few days following the delivery, that whole keeping me alive thing…worry about Spencer, not me!

The week of Christmas we were still in the NICU and Spencer decided to make it a more exciting week and quit breathing on his own at all, while I was doing my daily hour of kangaroo care. He went on a ventilator for the whole week (that was my first Christmas as a mom) and then on 27 DEC, pulled his IV and vent out and never went back on. He’s one of the lucky ones, he survived, and we left the hospital 64 days after he arrived.

He was diagnosed with a rare brain malformation (Rhombencephalosynapsis) at 10 months, and wouldn’t you know it, the amazing neuro Dr. Doherty is doing a research project on this at the University of Washington! So Spencer is in the best hands and is doing incredibly well! When he was diagnosed, I decided that being at home with him was more important, so left full time service and launched my own company, It’s a Preemie Thing because we all needed a little more humor in our lives.

I realize preemies are on their own timeline and you have to roll with the punches. He didn’t roll over until 10 months, sit up unassisted and Army crawl until 13 months, received a medical walker he could use to walk at 16 months, then at 17 months he could get into the sitting position on his own and crawl on all fours.

At 20 months my son let go of his walker and took 3 steps on his own…he’ll be two next week and I’m now chasing him around the house. He falls a lot (more than the average) and has some gross motor delays, but he’s alive, he’s walking and he’s mine. I’m the super happy mommy that I saw when this crazy journey known as motherhood began, and I wouldn’t change it. Because Spencer went through so much, I appreciate EVERY little thing he does and never take it for granted. Spencer completes me and I love being a mom.

About the Author: Julie Howard is a Preemie Mom extraordinaire and the owner of It’s a Preemie Thing, she resides outside of Seattle, Washington with her husband, amazing son, Spencer and two super cool greyhounds.

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