Mother’s Day

May 13, 2012

Hospital Days...

Four years ago on Mother’s Day I was gearing up for a very special day–the day my daughter would be released from the hospital.  Already it had been four weeks since she had been born; four weeks of running back and forth from the hospital, first from the NICU when her oxygen levels had been dangerously low and then from a Level 2 nursery at another hospital when her breathing had improved, but she still wasn’t feeding by mouth.  It was during these four weeks that I learned what kind of advocate I needed to be to raise a child with special needs. 

I absolutely detested the time she was in the hospital.  She was positively riddled with tubes and probes, making it impossible to cuddle her. You were always at risk of tangling things up or pulling things out.  Born with extremely low muscle tone, my baby did not have the strength to feed, so she had an ugly NG tube inserted and was gavage fed every 3 hours.  Feeding times at the hospital were very rigid– 9:00, 12:00, 3:00, 6:00, repeat. Most of the time we could barely wake her up to attempt to feed her in the typical way, so she’d sleep right through it, getting us no closer to our goal of breastfeeding or even bottle feeding.

We were also surrounded by strangers– other parents, nurses, doctors, and medical students who were interested in her in a clinical way, as a fine specimen of an infant with Trisomy 21.  It disturbed me when I arrived one day and found another father stroking my baby’s face.  He was very nice and all, but had he washed his hands?  And who else was touching her when I wasn’t there?  It’s also difficult to sing and chatter and bond with your baby when you feel like you have an audience 24 hours a day.  Such a pity since bonding with this child and providing stimulation for her senses were exactly what she needed.  Instead it all just felt completely unnatural.

Desperate to have some answers and to talk to someone familiar with this type of situation, I made some calls to a couple of nurses I knew.  I heard that sometimes babies are released with feeding tubes and parents can just work on feeding at home.  I was told what type of tube to ask for.  And I inquired about this option for our baby, explaining the information I’d heard from staff in other hospitals.   

And was told this would not be possible. 

Apparently she had to be fully fed by mouth and gaining weight to be released from hospital.  At this point in time, she was probably only taking 10% of her feeds by mouth, so I began to despair.  I had a healthy little baby lying there away from her mommy and daddy and brother with a team of strangers in charge of her care.  The nursing staff were amazing, compassionate people, don’t get me wrong, but in some ways it felt like she was being held captive, and it certainly seemed it would never end.

But fortunately the doctors later discussed my request and decided to give us a chance, so the next morning another pediatrician asked how I’d feel about taking her home with the tube.  I was all over it.  Of course we’d take her home with the tube! When could we leave?

So they began training us on how to use the NG tube.  First you put on the stethoscope and hold it over her tummy; then you take an empty syringe and attach it to the end of the tube;  you push a bit of air inside the tube and listen for the whoosh that indicates the tube is in the correct place.  If it is, you can remove the syringe,  take out the plunger, and pour in some milk. Finally you re-attach it to the tube and hold it up high, waiting for gravity to allow the milk to reach her belly.  

My husband even drove to the nearest medical school bookstore to find just the right pediatric stethoscope. Meanwhile, the hospital lined up a team of people–occupational therapist, visiting nurse, dietician, social worker–to come to our home to make sure we were well supported. 

The release date was set for the Tuesday after Mother’s Day. I felt more than ready the Friday before, but there aren’t as many people around the hospital over the weekends to help out if we happened to get into any trouble.  So Tuesday it was!  That Mother’s Day we went in to see her several times, practiced gavage feeding, and prepared her little sleepers and bassinette at home. What a joyous day it was when we finally brought the carseat in and drove away from the hospital with baby in tow! 

Home at last!

And you know what?  Her feeding began to improve right away.  Having her with us around the clock meant we didn’t have to stick to the hospital’s schedule – we’d work on feeding by mouth when she was awake and alert and would top it off with the tube to make sure she had enough.  At first it was a painfully slow process to feed her, but that was our job and we so loved having her with us all the time.  Three weeks after she came home, she pulled the tube out with her tiny fingers, and we’ve never looked back. 

Today she sat and ate an egg salad sandwich at our Mother’s Day lunch, and I marvel at how far we’ve come.  As a mother, I learned so much from our experience in hospital about what it means to advocate for a child with a disability.  You have to ask the right questions; you have to do your research and gather information so that you can be an informed part of medical decisions; you have to listen and absorb what others tell you; but then you have to have the confidence to pursue what your instincts tell you is the right thing for your child.  It’s not always easy, but I find this type of advocacy comes more naturally over time.  This year I had to pull it out at an elementary school case conference as she’s starting junior kindergarten in the fall; one day it will be at high school; another year it will be helping her find employment or living arrangements; and we’re still waiting to find out if I’ll need it to get her through heart surgery. 

Over the past four years, I’ve met dozens of mothers who have children with disabilities, and each one takes on this advocacy role in her own way.  Thrust into situations where they have little or no knowledge of their child’s medical condition, they find a way to manage the medical appointments, therapy, and education of an atypical child and still do the laundry, throw birthday parties, and go to the gym on occasion.  They speak out, they blog, they educate, they hold fundraisers, all the while making the world a better place for their children.  They inspire others, and they weep when their special child says Mama for the first time. 

A happy, happy Mother’s Day to all of you in my newfound and cherished community.  It’s a wonderful sisterhood, and I’m proud to be part of it.

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{ 6 comments… read them below or add one }

Amanda May 15, 2012 at 9:08 am

This post made me cry. So, so special.

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Heather May 18, 2012 at 12:46 pm

Thanks Amanda…

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Leiza May 18, 2012 at 11:11 am

Fantastic entry Heather…you are a fantastic mother and Rachel is so lucky to have you as her advocate and, most importantly, her mother.

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Heather May 18, 2012 at 12:45 pm

Thank you, Leiza… that’s so kind of you to say. And yes! It’s nice to enjoy “just” being a mom as well.

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Jennifer Wray May 19, 2012 at 10:51 am

What a privilege to be your mother Heather and to watch Rachel’s life unfolding in such an amazing way. She is a gift.

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Heather May 20, 2012 at 4:25 pm

Thanks Mom! XOXO

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