We're onto something, finally.

We learned so much about Annabelle Tuesday. My expectations were low, my wishes were set high but the information we received was invaluable. Our visit this week brought a huge new perspective about our daughter and is allowing us to now look at her life thru a completely new set of eyes.

Without sharing too many details, because so many tests, presumptions, and medical conversations are still taking place - I did want to share our initial impressions and where we are moving. 

Before Annabelle was born, my body went thru hell - we didn't expect to conceive or fully carry Annabelle and we really didn't have much explanation to what was happening with me. Mady was born healthy, full term and without any issues. Annabelle came after my body ran a marathon that depleted me of the best nutrients and support to carry a healthy child. 

I struggled to keep the pregnancy, and I mean I STRUGGLED! There were multiple Hospitalizations, several drugs including reglan, zofran, phenergan, multiple series of rhogam because I kept bleeding without explanation and finally towards the end, even more rounds of medications to stop labor on different occassions until we couldn't any longer. I received steroids and they pushed Magnesium as hard as they could for 11hr until Annabelle was finally born by emergency csection at only 33 weeks. I was sick the entire pregnancy, not typical morning sickness, I was diagnosed with Hyperemesis Gravidarum. I lost weight so rapidly that my own health deteriorated. It wasn't until the final cocktail of drugs that I was able to slow down on dropping weight and I finally gained a total of 6lb... And then have birth to a 5lb baby. 

Annabelle struggled just as much during the pregnancy. She tested positive during early genetic testing for spina bifida.. A 20wk Amniocentesis discredited the spina bifida threat but continued to come back high for genetic disorders but non specific to which. 

She failed all her stress tests. We visited the perinatologist multiple times a week until labor and delivery for the safety of Annabelle was just inevitable. 

During the gestational time Annabelle was born, was part of the most critical period for her gastrointestinal system. She needed to cook in utero longer, she needed the extra time to build a solid strong GI System, but instead, we subjected her to floods upon floods of drugs and then into the big cold world. From that moment, she was on her own to finish developing and thrive. 

Quickly once she was born, Annabelle was placed on Elecare. This formula in particular requires basically zero effort of the GI system to get the nutrients. All her body needs to do with elecare is absorb it. Our bodies are so much more responsible for finding the nutrients and things we need to survive. We break down red meats to get iron, we break down dairy to get vitamins etc. Annabelle's body was never taught to break down anything... All we taught her to do was absorb and not work, any liquid we out into her tummy. 

Now imagine a life and you've never eaten red meat. What happens the moment you eat your first steak? Your body freaks out and you're terribly I'll. you and I know there are plenty nutrients to gain and iron to absorb from red meat, but your body doesn't see it that way - your body rejects it and wants it OUT! It hasn't been trained on what the benefit of this new food is and what to get from it.

Moving forward. Annabelle didn't work an ounce for the first 18m of her life... In fact, she's only spent about 5 months in her 2 1/2yr NOT on elecare. We've never trained her body how to work and get the things she needs to survive. 

So keep that thought in mind....

We know, and confirmed without a doubt again, she has an auto-immune disorder. What we still do not know however - is just what exactly continues to set her into a full auto-immune relapse and make her body fight and attack itself. We used to think it was food.. Now we believe it to be airborne based on where the highest qty of Eosinophils were last found. But we still have no clue what exactly is doing all this. And until we know, we cannot protect her. And if we can't control the disease and protect Annabelle from it's threats - well..... We count Annabelle's best days and just be grateful for those. We all know this isn't an option and this is the point in every conversation where mama bear puts back on her boxing gloves and starts fighting ferociously again. I wear hives all over my body just thinking about the fight ahead... like right now, here they come again:

A couple considerations that are on the table:

• Annabelle is allergic to a billion things, her body's allergic reaction is to set off the auto-immune response.
• Annabelle's GI system doesn't know what to do with any foods or substances not does she know how to gain any nutrients from them, and in result - goes into auto-immune. 
• This could explain why each time we have attempted to lower the quantity / density of her calorie packed formula, she rapidly looses weight. 
• Annabelle has a rare form of Genetic Celiac Disease. Elecare could potentially have traces of ingredients that is setting off a response from Celiac.
• Which is odd considering Celiac Disease is what our first GI nearly bet money Annabelle had when she was 18m old. Our first scope was essentially to CONFIRM the Celiac diagnosis and begin treatment. When our doctor came from the OR, he appeared shocked and shook his head saying "it's not celiac, I'm sorry, it's going to be eoe". I will remember those words coming from that doctor for as long as I live.
• There are many deformations that the doctor recognized on Annabelle that clued her towards Celiac. What I didn't know however, is just how painfully difficult it is to get a Celiac diagnosis. 

Annabelle's tests came back alarming abnormal. In many dangerous category's.. primarily though in the liver, kidney, thyroid, endocrine and of course GI/nutritional areas (vitamins etc).

There are a few immediate changes we are doing now for Annabelle until more tests come back. I have been in close touch with all the doctors and have been absolutely floored and blessed to see how much they are all in constant contact with one another about my little girl. She's quite the hot topic of conversation around several offices and hospital and I am so grateful she's getting the attention and brain-power of professionals that she deserves. 

 

On a personal note: 

Our Memorial Day weekend was spent surrounded with family and friends and we thoroughly enjoyed all the quite time. I hope you were able to do the same. I am finding more and more opportunities to just sick back and soak in all the amazing things my children are doing, saying, playing and learning. I cannot say loud enough just how awesome these girls are!!  Mady graduated preschool Friday, as soon as her name was called on stage, Annabelle yelled "my sister! My sister!!!" And she ran down the center for the church sanctuary with her feeding backpack on to give her sissy a hug. We spent time playing in the pool, which has become Annabelle's new favorite past time. A wish she pleads for all the time... One I can't always accommodate and therefor would be lying if I said I didn't let the girls just pretend to swim and wear their bathing suits in the tub, more often than I care to admit ;)

Belle is talking up a storm. Her imagination is far bigger and more amazing than I ever believed possible for a child! I sometimes wonder if she's too pumped on drugs and is delusional lol. She loves to play pretend and does so all the time. I need to record her soon so you can hear her sweet voice and watch this amazing girl learn and live every bit of life to it's fullest.