I had a major fit of cabin fever today. It was -1 degree outside (yes, actual temp) so going outside was absolutely not an option. Rowenna has a little cold and yesterday we spent the entire day in our jammies, all snuggled up in the bed. Today she is no better and she spent the majority of the day sleeping.  I found myself with a lot of free time while she slept.

I am a nester by nature. I love the process of packing up a house, moving it across town, and creating “home” again in a new space. Since we bought a house, this hasn’t been much of an option lately. I can’t move so I organize and clean instead. Combine my natural inclination to nest with being cooped up in the house and you get a major house overhaul.

A reorganizing the closets, purging the cabinets sort of thing. A mountain of discarded books and clothes occasion. (We donate to Salvation Army.) A sweeping underneath the beds and dressers event. (I know this sounds like a lot for one day but I do this a lot and I’ve got this down to a science.)

Anyways, this time around I also tackled Rowenna’s room. I found a huge bin of NG tubes, syringes, and Duoderm tape in the back of her closet. Rowenna’s former feeding system.

Just two months ago I was in tears, convinced my baby was headed for g-tube surgery. A more permanent solution to her feeding troubles. After her open heart surgery I had to fight to bring her home without a g-tube, certain she would begin to eat again if only I could get her home. When we got home, she still wouldn’t eat. Meal times were a constant struggle. Over and over again we coaxed her into eating an ounce or two and pushed the rest of her milk through her tube. It took over an hour to feed her. Every feeding. 6-7 times per day. That’s almost a full-time job. And we’d been doing it for 4 months straight at that point. A few weeks after her surgery I was convinced she would need the g-tube.

There is something very primal that bubbles up when your baby does not or cannot eat on her own. For me, it was a feeling of overwhelming, inexplicable despair. Feeding her baby is the most basic, instinctual thing a mother does. Even if she completely fails as a mother (whatever that means), she was probably able to at least feed her kid along the way.

And there I was, completely unable to feed my baby. Not for lack of desire or lack of effort, but simply because my baby could not eat. My heart broke for her and I feared more surgery and years of feeding tube dependency.

Finding that box of supplies today was a reminder of how far we’ve come with Rowenna and how much she has taught us already. Rowenna does things on Rowenna’s time.

How did she finally get off the NG tube? One day she simply pulled it out herself and we didn’t replace it. From that day on she took all her feedings by mouth. It took a while for her to get a whole bottle in 20 minutes, but once she pulled that tube out she took 100% of her feedings by mouth. Not only does she drink her bottles, she’s also mastered 5 purees.

So, I happily packed up all those feeding supplies and tucked them away in the attic. I packed away those feelings of inadequacy, too. Those rough days are behind us.

Then I shed a few tears for the too-small clothes I packed up as well. My baby girl is growing so fast!

In an effort to keep her toasty warm in this big old house of ours, she also spent the day in some delightful little jammies, a most welcome hand-me-down from one of her friends. Here she is trying to be stealthy and sneak a peek at her beloved Jax (our cat).


Little Leopard Jammies!



2 responses to this post.

  1. Posted by Great Grandma on January 29, 2011 at 12:53 pm

    Hi, I loved this writing. I always get teary when I read your words because they are so touching. Also, I love the pic at the end with the leopard pajamas on. Could I get a copy of that? I show off pics to everybody and they love them. See you tomorrow! Grandma


  2. Love your blog and particularly related to this post. My daughter is 6 weeks old today and has actually been without her ng tube for a little over 2 weeks now (also after pulling it out herself and we decided not to put it back in). I know that we were lucky to get her eating by bottle. But it’s been getting harder to feed her and it’s so easy to get discouraged and depressed. I imagine a part of it has to do with her getting weaker with her heart condition, so I really hope that after her OHS things will improve. It was nice to hear how your beautiful little girl has done, since it gives me hope that one day my entire life won’t revolve around feeding Cora.

    Thanks so much for writing. Findings blogs with writing like this has been so helpful for me, in dealing with Cora’s diagnosis, hospitalization and all of our futures.


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