Hold please.

Stella finds her thumb.

Stella finds her thumb.

This was a day when we didn’t fall behind, or get ahead. For the most part, we were simply on hold. And that was okay. Stella did have a first, and she was delightful company as usual.

Stella’s first appointment, with our occupational therapist, was cancelled. I was not disappointed to miss it,  as we’ve been seeing progress and therefore want to continue with the strategies that are working. I received another cancellation call from Dr. Devorah’s office. The news that Stella’s cranial osteopathy appointment will need to be moved from tomorrow to next week left me feeling a bit crestfallen. My hope is that they will fit us in on Monday, or as soon as possible.

Her ultrasound appointment was not cancelled and went smoothly. Somewhat concerning to me was how well she handled several hours without eating–we were given strict instructions to ensure that she had an empty stomach. She’s definitely come along in the hunger department. Having self-limited her own intake for weeks, before the tube, she’d happily go for long stretches of time without eating (despite my best efforts). These days, she usually does get hungry every three to four hours. So I’m trying not to worry about it.

While in the Radiology waiting area at Children’s, a woman struck up a conversation with me. She remarked on Stella’s cuteness, and politely inquired about why Stella has a tube. I explained the whole situation, and she nodded knowingly. Her son had severe reflux that wasn’t treated until he was nine months old! He only weighed ten pounds at that age, and therefore required a tube for a long time. Another woman, sitting across the room, piped in, “That’s exactly what’s happening with my son!” He is four months old and his doctor only just recently diagnosed and began treating his reflux. She described the enormous struggle involved with feeding him, and it was as if she were telling Stella’s story. He was a lot smaller than Stella. He did not have a tube. Though I did wonder about how they were treating his aversion, I didn’t pry. We simply discussed our shared frustrations and took comfort in talking to someone who really “got it.” Both women said they were impressed with how healthy and big Stella looked, which made me feel great.

All in all, Stella did okay with the bottle today. Just okay. She ate with less enthusiasm. In fact, she seemed a bit bored, which made me wonder if I’d made the formula too thick and therefore too slow. On the bright side, she wasn’t upset about eating. She was relaxed. And she took about half a bottle while we were at Children’s–the most she’s taken away from home–even though she kept getting distracted by her surroundings. She stopped eating a couple of times, then continued, which is always encouraging. But her head swiveled as she ate and I had to move the bottle in an attempt to keep the feeding going. I could almost hear her thoughts unfolding one right after the other: “Whoa, what was that noise? Who’s that funny-looking guy? What’s that shiny thing in the corner? They call that a gift shop?”

While the ultrasound technician stepped out of the room, Stella did something with much enthusiasm, for the first time that I’ve seen. She sucked her thumb! That’s right. Stella has discovered her thumb and she loves it. Her Dad was a thumbsucker (if there was a hall of fame, he’d be in it) and it looks like she’ll be following in his footsteps. I captured this milestone on my cell phone camera. As happens so many times with Stella, I couldn’t stop smiling. Can’t wait to see what she does tomorrow.

3 comments

  1. Grandma Karen · December 18, 2008

    Seeing Stella suck her thumb is so reassuring to me for many reasons. I just love seeing each new picture posted as, Amber, you are capturing some really great moments for all of us.
    Talking to others who have experienced what you are with the tube feeding must be very reassuring that all is going so well. I thought it would be helpful to have a support group who have had this same issue to deal with, but it sounds like you just got a big infusion of support while waiting for that ultrasound. Thanks for sharing that with all of us.

  2. Monica · December 19, 2008

    Tough and beautiful don’t often go together, but Stella is both. I love the thumb picture and I do remember Cody and his affection for his thumb. Basketball, music, writing….Stella has great genes and wonderful parents. Thanks for sharing your journeys through this rough patch. It really does sound like things are getting better and Stella and her Mom and Dad will have a great first Christmas together.

  3. Rocio · December 29, 2008

    Hello,
    I just wanted to tell you that I am very excited about your baby. Mine is 4 months old corrected age and was born at 28weeks. He went home on an ng tube after being in the hospital for 3 months. I really want to get rid of this tube and makes me very discourage every feeding time because he rejects the bottle. I will love to talk to you on the phone to discuss some of the tips you can give me since your baby has done such great advances. 713 2981551

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