Wednesday, April 3, 2013

Easter Sunday and Other Happenings

We had the surgery consult for Naomi's feeding tube placement last Thursday.  We were both second guessing the decision to have the tube placed leading up to the appointment.  The surgeon, Dr. Scholz, was very thorough and patient.  He answered all of our questions and showed us the device that will be placed, explained how it works and how they are changed.  We felt much more comfortable after the appointment and very positive about our decision to proceed.  In the time since then we have seesawed back and forth about it all.  It's a very hard decision to make, for a lot of reasons, especially when you are dealing with an illness like Naomi's.  Any intervention, like a feeding tube, has the potential to extend life.  Extended life is not necessarily always a good thing.  Each individual case is unique and the beliefs and feelings of the patient and the caregivers must be considered.  I categorically judge no one for the decisions that they have made or will make that are different from those we are making and will make for Naomi.  We decided, when Naomi was diagnosed, that we would pursue minimal interventions and only those that would extend her life while she still has the capacity to enjoy her life.  We do not think keeping her body alive when her brain is gone is what is best for her or, just as importantly, for us.  At the same time, we do not want to deny Naomi interventions that could make her more comfortable while she is still cognizant.  So a feeding tube treads that line.  At this point, we struggle to feed Naomi and the struggle causes us incredible stress, and as such, the stress extends to Naomi as well.  We now also have Lydia to consider.  It is very important to think about and manage the experiences and needs of all family members, not just the sick one.  We believe getting Naomi a feeding tube will improve the quality of life of all members of our family.  Most importantly, we feel we will be able to provide Naomi better nutrition with the tube than we can without it.  I know I feel like garbage when I don't eat what I call real food...not power bars, or protein shakes or other things that have to be made in a lab, but food grown and prepared as, for lack of a better phrase, nature intended.  Half of Naomi's calories come from what is basically liquid powerbar drinks.  We often wonder if her mood would be better, and her other issues, like chronic constipation, better if she ate a better diet.  My plan is to feed  Naomi what is called a blenderized diet through her tube, gradually replacing most if not all of the 'power bar' calories with good, real, food.  The surgeon said as long as it goes through the tube, we can feed it to her.  The ability to improve the quality of her diet was the ultimate deciding factor in favor of the feeding tube.  I am, actually, excited about the blenderized diet and so for the past week I have been doing one of the things I do best: research.  I've been studying blenderized diets, reading, calculating and planning.  It feels good to have something active to do to help Naomi.  So often I feel powerless and useless in the face of the gravity of her diagnosis and  disabilities.
The decision to have the feeding tube placed was and is difficult for other reasons as well.  First of all, it's one more step away from normal.  No, it is not normal to spoon and bottle feed your four and half year old child. But it is very normal to feed your nine month old child that way, so it doesn't feel that, well, unnatural.  Naomi never progressed beyond that so it is just sort of how it has always been.  Feeding your child through a tube placed in her stomach is very, very, very far from normal.  On the other hand, who are we kidding?   We don't live a normal life in ANY way.  So at some point, well, it's all water under the bridge.  It is also hard because it will changer her physical appearance.  (I love her cute little belly.) This is mostly only an issue for me.  Rob isn't bothered by it.  But last summer Naomi fell and chipped one of her front teeth and I cried for days over it because I hated that her teeth were no longer the way they were "supposed" to be.  It's also hard because it is the first tangible step down the inevitable road of her regression to a vegetative state and her death.  That feels very bad.  Very, very bad.
In other news, Naomi has been sleeping much better and eating much better.  She ate a Stage 3 baby food dinner today for the first time in over two years.  As a result, she's been in a much better mood, has been mostly her old self personality wise, and has been having great days at school again, which we really love to hear.  It is ironic that she started eating better pretty much as soon as we decided to get the feeding tube.  The improvement in her mood with better sleep and food, however, reinforces the decision to move forward with the tube.   Easter went mostly well, for a holiday with Naomi.  She was up early, which was unfortunate but because she's less sleep deprived in general she handled it a lot better.  She wore her pretty dress I made for her and Lydia wore the dress I made for Naomi for her first Easter.  They also both got little rabbits I made from a fun pattern by Alicia Paulson of Posie Rosy Little Things.  It would have been more gratifying for me if either of them had been able to play with their rabbits or been excited about their pretty dresses, but maybe next year.  Or the year after that.  As it was,  Naomi and Lydia looked beautiful to me. and it was fun putting the rabbits in their baskets and posing them with them on their laps.  Naomi and Daddy participated in the Easter egg hunt at Grandma and Poppa's church and she really enjoyed it!  It was fun.  Afterwards we had Easter dinner at Grandma and Poppa's with Auntie Sarah,  Uncle Brent, Grace, Margot, Uncle Joel and Aunt Jane.  Then Naomi fell asleep on the couch watching a show.  That almost NEVER happens.  (She was up early.)  We usually use shows to keep her awake.  She was a bit of a grouch when she woke up so we had to take her home but she was pleasant and sweet the rest of the evening.  Daddy had off Easter Monday too, after being off Thursday for her appointment and Good Friday and the weekend, so that extra time was nice.

Lydia's Easter basket was in the jumper! With candy for the adults.  

Naomi's Easter basket was in her swing!   With more candy for the adults and some special juice for Naomi.   

All ready for church on Easter morning.

With their rabbits.

Naomi and Daddy hunting eggs.  Naomi carried her own basket over her arm!  So cute.

There's one!

Get it, Daddy!

All of us.

Asleep watching a show.


  1. Love this blog!

    I personally understand how it feels to deal with major health problems and how frustrating it is to deal with all of the metaphysical "why me" and "why us" baggage that accompanies the physical issues.

    Life would be easy if everything made sense and every outcome was the direct result of something that we earned or did. Unfortunately we all have to live with at least some realities that are beyond explanation.

    Your family has demonstrated so much love during the past few years. Thanks so much for sharing. You are awesome!

    1. Thank you Jason. Your story inspires me as well. I hope healing continues for Jessica.

  2. I am FAR from talented enough to follow a pattern, but I read Posie get Cozy and LOVE Alicia Paulson's patterns (and her pictures, and her positive attitude, etc. etc.)! I'm not sure how you find time to create so much, but I'm impressed :) Both girls look gorgeous in their gowns...
    We'll be thinking about you all as you proceed with the surgery, and hoping that it goes smoothly and that good food makes for better days. And nights. For all of you.

    1. Thanks Jenni. The rabbit pattern is very doable. I let Lydia take her long sleep during the day so I can craft while Naomi is at school even it means she keeps me up at night. Which is great, except when Naomi is up really early too, then it's not so good. Oh well.