"For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you when I was made

in the secret place, when I was woven together

in the depths of the earth. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16

Saturday, February 16, 2013

I heart a tubie

I'm a little delayed in getting this update out between getting Meg home and me being sick, but we're home, and settling into life with an NG feeding tube. We haven't left the house with Meghan yet mostly because we are trying to get used to a new routine. It's a little intimidating- making sure the tube is secure, doesn't get pulled out, hooking up the feeds, administering her bolus feedings etc, but its all worth it. I stepped on the scale with Meg tonight and she's gained .6 lbs in 5 days. After nearly 2 months with no gaining, this is big stuff! Maybe just maybe, she will actually double her birth weight in time for her first birthday! She seems to take being a "tubie" in stride in her usual smiley way. She amazes me, and so does her big sister. I can't imagine what it's like to be 3 and have your little sister go through things you don't understand. When we came home from the hospital, Addie met her face to face, said, "is that her tube?" And gave her the most gentle kiss right over where the tube is secured to her cheek. I am so proud of her.

The remainder of our hospital stay included an ultrasound of her kidneys and bladder and a consult with a pediatric urologist. Our neurosurgeon is trying to decide how soon, if ever, to operate on her tethered cord. She scheduled her for urodynamic testing next month to give us a better idea of whether or not she's having any bladder dysfunction which could indicate that she needs to have the surgery. It will also help us to see if she's having any reflux in her kidneys, since they are both on the same side and "snuggled up" together.

We'll go see a surgeon next week to discuss the possibility of having a g-tube placed in her tummy instead of the NG. The less time she spends with a tube down her nose the better. I worry a lot at night that she's going to get tangled up in all the tubing. Thank goodness for video monitors, and a husband that's not afraid of the whole setup.

I am continually amazed at how patient and sweet Meghan is through all of this. She had a pretty rough week, and never stopped smiling. She smiled at the doctors, nurses, techs, and even at the man who drew her blood- twice. She'll shed some tears, and as soon as its over she grins to tell you that she's alright. It is a gift to love this little girl through all of things I wish I could take away.

While we were waiting for our room assignment Monday, we were pushing her around the hospital lobby. She was babbling, which until Monday, consisted of baba, dada, and a few ga's. Then it happens. The moment every mommy waits for. She said mama, and smiled so big I knew she was proud of what she had just done! It was a perfectly timed moment I know will stay permanently etched into my memory. A little thing to some, but now I know better than to take such little things for granted.

Ironically, Meghan chose the 3rd Annual Feeding Tube Awareness Week to acquire her new look. Here is a link to the Feeding Tube Awareness Foundation. There is excellent information on feeding tubes, including a letter to friends and families of kids with feeding tubes. 

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