Wednesday, August 10, 2011

Catch 22

With Mabel, everything is a Catch 22. 
Right now, specifically, we are struggling with some feeding issues.  Mabel hasn't gained weight in about 6 months.  She has weighed between 13-14 pounds since she turned half a year old.  The problem is this:
It takes her a very long time to eat a very small amount.  She has a weak suck so feeding her a bottle is extremely hard and she lets much of her formula leak out of her mouth.  After about 15 minutes of a feeding, she is actually burning more calories than what she is consuming.  Until lately, we didn't realize that this was contributing to the problem. 
 She can only consume about 4 oz. of formula at a time.  She is so exhausted after eating a bottle that there is no use in trying for more.  Babies at her age are typically drinking 8 oz or more at a time, plus eating table food.  Mabel can and will eat table food but again, she exhausts so easily that it is very difficult to get in a substantial amount of nutrition.  Her chews are short, forced and limited.

She shows no desire to eat.  The only time she cries for a bottle or food is during therapy, when we believe it is more of a comfort to suck than it is a longing for food.  Therapy is burning many calories, we believe, so for a couple weeks we are going to shorten the sessions and see if we can get some weight on.  I'm not sure it will help but we are going to try.
Mabel's dietitian put her on a high calorie formula a few weeks ago.  She was on it for 2 weeks and still had severe constipation.  (I have to assist her in pooping every time she has a bowel movement.)  When we weighed her, she had actually lost weight rather than gained.
Who does that?

The dietitian suggested we try another high calorie formula because she may be intolerant to milk and soy.  We are currently trying that.  Our pediatrician and other Dr's are concerned with Mabel's lack of weight gain.  I know how important the first year is for brain development and proper nutrition and it just feels like none of that has been established.  She has no energy--possibly due to mito, as suspected.  Or possibly due to the fact that she just cannot get any sort of nutritional substance to help her out.  Being tired leads to sleep.  Sleep leads to lack of development, both physically and cognitively. 

She has seizures so we give her seizure meds.  They make her exhausted on top of her already deep exhaustion.  Also leading to lack of development and lack of energy to eat and thrive. 
Here is where I could continue my rant about everything being a Catch 22 with Mabel.

So on Friday we are meeting with a GI specialist.  We knew that we needed to get established with one anyway.  Because of Mabel's severe constipation and low weight gain, it was inevitably the next step in this long, ever changing process. We are sure that we will probably be discussing a feeding tube being placed for Mabel considering that it was already mentioned by two doctors this week alone. 

I want to continue trying everything possible to get Mabel to gain weight and will exhaust all of our options to do so.  However, I know that it is important not to wait too long to get her the right amount of nutrients because in the meantime, we are delaying development even further and possibly wasting precious energy. 
Please be in prayer for us as we meet with the Dr. on Friday.  Alot of big decisions have been made along this journey-all which have felt very heavy in the beginning and then slowly became normal.  Therapy, Seizure Meds, Specialist after Specialist. 

Every decision has been prayed about and thought out meticulously on our end and we are confident that we have made the best choices for Mabel until now.  I am hopeful that will continue to do so as we venture into this life that we never planned for ourselves but have accepted with great humility. 
We appreciate your love and support and as always, will keep you updated!
3 days until our race!  Hope to see you there!!!

1 comment:

Mrs. RN said...

I hate to say it, but maybe a feeding tube wouldn't be a bad idea. If she got that, she wouldn't be using up all her energy to eat. Maybe then she would be able to put on some weight, have more energy for therapy because she would have nutrition, and eventually be able to work her little mouth to where she doesn't have to try so hard to eat, and then once she is eating okay the feeding tube could be removed. Positive thoughts! Thinking of her :)