On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Wednesday, June 29, 2011

5 weeks to cake.

Phoebe's feeding tube came out on Monday, and although it was out for 36 hours and Phoebe wasn't getting fed and probably feeling hungry, she still refused to eat on her own.  She did make some progress with pureed foods, but when she was presented with the bottle, she would cry like she was being given one of her awful tasting medications, and therefore it closely resembled torture. There are a lot of factors that contribute to Phoebe not wanting to eat.  There is the fact that she has been tube fed for the past 7 months, drinking little by herself most of the time.  There are the medications that she must take by mouth, some of them tasting really disgusting, and there is the discomfort that she seems to feel while the feeding tube is in place.  All things considered, I think that learning to eat again is going to one of Phoebe's biggest challenges.  We were really hoping that without her feeding tube in, that hunger would take over and she would drink something.  But, we have learned that if Phoebe doesn't want to do something, she won't.  

We are going to focus on trying to get her to drink from a cup and to eat foods that she can pick up and feed herself.  Developementally this is what she should be starting to do, and what we seem to have the most success with.  Because of all of her mouth sores, intubation, and pain related to treatment - the bottle and most other things that approach Phoebe's mouth are met with complete refusal.  She needs to learn to eat, but also to love food and all that it will do for her.  Because she has been tube fed for so long, she doesn't understand that putting food in her mouth will help her belly to feel full and this is something that will take some time.  But, time is what we have and however long it takes is okay.

In the meantime we are thinking about switching Phoebe to a G tube, instead of the NG tube that she presently has.  The G tube goes directly in to the stomach, bypassing the nose and throat and we think that it will help to take away some of the hurdles that Phoebe faces on her path back to full feeds.  Things like acid reflux and discomfort swallowing, or the simple fact that Phoebe constantly pulls her tube and is therefore often held down so that it can be re-inserted and taped to her face.  Because nurses and Jon and I are constantly touching her face so that we can retape her tube, she has started to push hands away, even if they are touching her face in a gentle and loving way.

In one week, Phoebe will be 11 months old, and 8 and a half of these many months has been spent in hospital.  This brought a tear to my eye last night as I thought again about all that she has been through in her short life.  Then I thought about the very real possibility that Phoebe will be at home in time to celebrate her first birthday and therefore have her first taste of cake. Perhaps this will be what eventually convinces her to eat.  Delicious and not so nutritious rich chocolate cake.  After all that Phoebe has been through, she can eat as much cake as she wants and if it encourages her to try other foods, well then that is just even more wonderful.   And if it turns out that she just wants to eat cake, well that might be okay too.  I can bake brocoli and all kinds of nutritious things into cake so it's all good.  

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