I took the above picture of Maryam when she was trying to cruise. She seems like she really wants to do it, but only gets a few steps under herself when she decides to sit down and crawl to where she wants to go. Her PT suggested putting a toy just out of arm's reach and that might encourage her to take baby steps. And it has, she takes about 1 and a half steps before she just plops down and crawls.
These pictures were taken during dinner! Look at how happy she is! I think she's proud of herself for trying so many different foods recently. As you can see, she has most of the food that she put into her mouth on her bib, but the fact that she's trying different flavors and textures is AMAZING!
I'm working on changing my vocabulary back to a "normal" mom's vocabulary. I got so caught up in the whole medical aspect of feeding Maryam that I stopped using everyday terms to describe her meals! I didn't even notice I did this until I started reading a book that Maryam's OT bought for me to read. Its called "Homemade Blended Formula Handbook." And the whole premise of the book is "Tube Feedings are Mealtimes, Too!"
I don't think I had ever uttered anything like, "its time for breakfast, lunch, dinner, snack, etc." I always say things like, "Its time for another feeding." The book is right though, I totally stopped looking at feeding Maryam as a time for us to bond and learn from each other and totally turned it into a medical procedure. I think at first that happened because I was so afraid of doing anything wrong. She had already had so many complications that I didn't want to harm her anymore. And she had such an intolerance of being fed that there was nothing calming or comforting about that time. Most babies just lay down in their mother's arms and drink from a bottle or breast feed. The mom and baby can gaze into each other's eyes, relax and fall in love. With Maryam, anytime she was presented with a bottle she'd panic, get anxious, start breathing too fast and start to cry. There was nothing relaxing about it. So, we never got to experience the calming and soothing aspects that come with feeding our baby.
Once we had the Gtube put in, boding during feedings got even more difficult. It was awful. She would retch so much that we had to constantly keep her vented. What that entails is keeping a syringe attached to her feeding tube, safety pinned to our shirt while we still managed to squirt milk into the same syringe so it could trickle down into her stomach. Mind you, I'd be holding her in my arms during this process, the last thing on my mind (sadly) was bonding with her. I was worried that she was in pain, that I was going to get more formula all over her, me and/or the furniture and questioning if the medications are staying in her stomach or getting squirted back out with every retch.
I digress.........Now, I'm on a mission. I've decided to try to make tube feedings a mealtime too! I'm going to take all the medical terms out of her everyday meals and make them as normal as possible. I'm even going to consult a dietitian on starting her on a blenderized diet. That way Brett and I can shop for food for her like we would for us or any other child we would have had. Then she can "try" the food in her tummy before she "tries" it in her mouth, maybe she'll be more open to it. Just a theory. Who knows? I guess we'll just have to wait and see! Wish us luck!
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