Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Monday, December 31, 2012

Processing....Perspective on Graces received in 2012

Processing...a coping and learning tool I have learned to utilize and strengthen and allow myself on this journey with my son.   With processing brings perspective.

The past months have been a lot to process, the past years have been a lot to process but from long term TPN last summer-winter, followed by food trials (and fails), followed by a formula challenge, an NG tube, formula adjustments and building intolerance, a G tube, a new formula, an 8th formula fail, intestinal inflammation, an expanding menu, functional medicine practitioner, healing properties of broth, trusting my gut, occupational therapy, speech therapy, a growing and thriving little man in spite of all of his road blocks. It is always a lot to process as we learn on each new step of this journey.

If you're following my blog, or more so- the sequence of Little Man's journey, I am attempting a slew of catch up posts (backdated to keep the entries in order).   My postings slowed down around Feb.8th (yes, almost a year ago!) when little man was admitted to the hospital via the ER because of a fever for a potential line sepsis infection (when he still had a central line for IV nutrition/TPN) that turned out to not be a line infection (thank goodness!!) but instead confirmed FPIES reaction (fever, vomit, elevated platelets and leukocytes and neutrophils-with a left shift).  It was a very rough time for us, as a family- with little man's health and medical care, with needing better treatments from his medical team, seeking new consults and fresh opinions, needing a change of course and not knowing which path to follow.  I prayed. A lot. And, I can't say at what point it happened but a new growth- a new level of faith was graced upon me. God looks out for the birds and the crops- why would He not look out for Little Man?  In whatever path. Whether it be my chosen direction or not. As long as we follow His path, He will show the way.  I know that sounds "preachy" or "religious" (what does religious sound like anyway?) but it isn't meant to me....I can't quite seem to paint my soul - this faith that lies within.  This faith that is only possible through graces -- graces given as gifts, from Above.  Asking for graces allows Him to strengthen faith....not asking for Faith or expecting false can't be given faith- you reach it with His grace.   So much processing, so many perspectives granted. I prayed for graces.  I needed them.

Graces to get through what we were to endure during those long months this spring and summer.  What Little Man was to endure. The grace to stand aside and let God lead (I had to pray hard for that one!).  The months to follow- through the above mentioned circumstances, were very tough. But, I was ready.  God had granted me the graces to get little man,and our family through another very hard time -- and (hopefully) come out stronger (and wiser?)...and on new paths. I will attempt to continue to update this blog, taken from journal entries over the year- in case there are others that would like to follow along our journey.

Strength from graces, shielded by Faith, we look forward to 2013.

Acidic Bile Vomit

The other day, I came across this picture....from January, a year ago.  I had washed it 2-3 times by the time I took this picture....and then threw it away.   The pillow looked dirty when it was clean.  I took the picture before I threw it away.  Why take the picture?  Because I am still in disbelief of how this vomit stains EVERYTHING! Before the FPIES diagnosis, or knowledge of anything FPIES- I threw away shirts with these same stains on them- both Little Man's and mine. I would throw them in the wash IMMEDIATELY -we always had a full load by the time the vomiting was done, all the towels it took to soak it up, the bed sheets, the clothes we were wearing, the washcloths used to clean up...and they would always stain.  The stains remain on the mattresses, the pillow themselves, as well as blankets and sheets we are not throwing away, and the some spots on our carpet....yellow vivid stains. A reminder when I change sheets of these long nights....

Bile vomit is very, very acidic. It stains everything. This pillow....this night...the vomit was scary. It made me think of all the times he was alone in his crib, not even waking up to vomit (the allergist who diagnosed him said this was indicative of shock- where they don't even...can't even, wake up to vomit).  This night, the story this pillow tells....a night in January when little man was (unknowingly) reacting to sunflower lecithin that had recently been added to his previously safe Living Harvest Tempt  Unflavored/Unsweetened Hemp milk.  It was 3 nights of green vomit around midnight before we figured out it was the hemp milk (that was previously safe when it did not contain sunflower lecithin).  This night, this last night before we discovered it was the sunflower lecithin  I had just laid my head down on the pillow next to him (hubby or I took turns sleeping with him while he was on TPN- IV nutrition, as his IV line was a central line, we didn't want him twisting and turning in the night and getting tangled in his lines).  I had just laid my head down and I heard this gushing the sound of the toilet overflowing. I jumped and looked towards the bathroom- expecting to see one of my other boys running out of the bathroom- trying to find help for an overflowing toilet.  Except as I sat up, I realized it was Little Man because he the gushing happened again- he wasn't even awake, barely lifting his head off the pillow to vomit this green substance.  I scooped him up and had him in the bathroom a few seconds later (right across the hall from his room) to finish emptying the contents of his stomach in the sink.   I just can't forget that sound....the gushing of vomit, and looking over at him to see his eyes not even open and more vomiting coming....FPIES sucks.

Why share this?   Why share this scary story?  Because this is the reality of an FPIES child, of an FPIES family.   The amount of vomiting that little man has experienced is not normal, not ok, not healthy.   The amount of vomit we have had to clean up, his brothers have had to watch him experience, we have had to help him through....all more than one child should have to endure for sure.  But all the stark reality of these children and families. Maybe this will change one day, maybe more will be known about the mechanisms of this allergic response and future generations will not have to go through so begins with this, sharing our stories (yes, even the 'scary' ones), it starts with awareness of what FPIES is....