Saturday, March 15, 2014

Damnit, we're exactly where I didn't want to be!!

Just when things seem to have been going smooth and well for Annabelle, we change the game on her and it's been less than fun.

I spent a lot of time this week with several doctors and nutritionists, they have narrowed down the most likely explanation for the green residue in Annabelle's feeding bags and tubing. 

Since the formula she is on is missing some of the essential amnio acids and heavier in others, those levels that have been shifting for the last couple months are now so off balanced that they have produced this greenish byproduct that we're seeing flooding from her belly. Certain lab levels are thru the roof, while the others are becoming more and more severity deficient. 

The plan doctors have come up with, is exactly what I have been fighting against for nearly 5 months. 
They want to move her back to Elecare. I'm scared to death.. Terrified is an understatement!

The byproduct I'm seeing is not comforting at all, it's an outward demonstration of how incomplete and unsafe this nutritional method is - however, there is a specific image burned in my mind of my daughter when she was on elecare and more than anything in this world, I don't ever want to go back to that place!! But I don't have much of a choice... And doctors certainly are not offering any other suggestions or options for us to consider.

Wednesday night we began to transition into elecare; 1/3 elecare to 2/3 BCAD/Anamix. Her temperature spiked.

Thursday, same thing. At each feeding she would spike a fever and become very clingy until the feed was over. Thursday morning, Annabelle was in a great mood and we had a wonderful start to the day, by the afternoon she was struggling to keep balance and stay awake. She would have moments of laughing and play but they were followed by immediate rest.. Coughing and choking to vomit, shortness of breath and heavy fatigue.


It's such a tough time, also, to gauge whether or not this is all the formula change or a side effect of this allergy/cold yucky stuff she has going on. I've spoken with our pediatrician , aka god-sent-angel, and she clarified that Annabelle likely sounds to have the same allergy mess that everyone is experiencing in her office. We know from our last allergy testing that belles spring seasonal allergies were horrid and we all anticipated this happening each spring, I just overlooked that from last year and forgot to begin our allergy-meds-action-plan. 


By Friday we were completely changed over to elecare and at that point it became clear that Annabelle's behavior is not part of her allergies. I can for certain relate this patten to the elecare change. I hate hate this more than you can imagine.

She's awake every 2 hours crying, she sounds to be in pain but appears just to be very disoriented and scared, and pleading for someone to stay near her.. When Annabelle is in the hospital or struggling in any way, that's always her fall back behavior, she wants someone directly beside her, she wants to hold your index finger (crazy kid). When she's feeling well, she sleeps alone in silence and complete dark and likes it that way. When she's hurting, she doesn't want to be alone. Our nurse probably has a little to do with this too.. She never leaves Annabelle's side and watches and loves her unconditionally around the clock ;) spoiling her may be an understatement , but the kid deserves it so I'm not complaining.

She's taking a couple naps a day now, and each time waking up very clingy and emotional. She's so much more verbal now than she's ever been, but that comes along with her telling me repeatedly "mommy, love you - love you mommy, Annabelle's sick. Help me mommy. Help Annabelle, please." until you hear those words and have absolutely no way to help your child, you haven't felt crushed and run over with a truck of guilt. I'm deliberately feeding her every 2 1/2 hr with elecare and it's making her sick.... And I have no choice but to continue to do it! I'm so over this hell and illness that had plaqued my innocent child. I'm tired of being the one that has to continuously harm her!!!!! That isn't what parenting is supossed to be about! I get, sometimes we have to do things we don't want, when it's best for our kids.. But i think this is exceeding that rule.i hate it!

It's 10am and she is already back in bed. Mady woke up twice last night vomiting, which then throws ak and I into a panic. Our girls are sharing a room and Annabelle can't afford to get sick - so 2:45am turned into a strategy of isolating mady from Annabelle and ourselves, and getting belle back to sleep, mady comfortable and my nerves at ease from fear. 

At this time, I need to thank my ridiculously incredible side-kick husband, the one who rebounds out of the bed faster than I do at the sound of dry-heaving lol. He changes bed sheets and refills sippy cups while half asleep all night long and still let's me sleep in on the weekends when he's exhausted. Last night was no different, and today were both dragging. Hopefully the girls both get plenty rest and prayers Annabelle can continue holding it all together until our appointment this coming Wednesday. At that time we will reasses the elecare and how it's working (currently: not working in my opinion!) I pray we will be given a better option at that time, Annabelle cannot fall back into the place she was this past fall. 

http://superbabybelle.blogspot.com/2013/11/weve-made-it.html

Right now I am living my biggest fear. We're back on elecare, Annabelle is showing clear signs of fighting it, and mady just brought a virus into our home. Dear lord, put these children in a bubble, please!!!

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