Wednesday, August 28, 2013

Our FPIES Journey

It was an exciting Sunday at our house.  We were home from church and we were getting ready to give Josiah his first trial of baby cereal.  Everyone and their dog had told us that giving him baby cereal would help him to sleep better at night.  We welcomed anything that would help him sleep better at night.  He was consistently up every 30-45 minutes from the time we'd first welcomed him into our home and I was EXHAUSTED!
We mixed up 1 tablespoon of gerber baby rice cereal and his special formula.
He LOVED it!  Slurped it right off the spoon like a champ!
Then we laid him down for his nap and we rested too.
Two hours later, he vomited.
This wasn't just baby spit up.
This wasn't baby reflux, which we had plenty of experience with.
This was PROFUSE vomiting.
We freaked out and called the Dr.
The Dr said it was probably just a stomach bug.
Josiah continued to vomit.
We were terrified!
We called another dr friend that lives down the street.
He told us to give him pedialyte.
Josiah kept passing out in our arms after vomiting.
This all happened w/in a 30 minute time period.
We called Josiah's dr and told him we were rushing him to the ER.  He insisted we take him to Children' we did.  We sped like crazy.  It wasn't safe, but our baby, who is a yummy chocolate brown was yellow looking and pale and unresponsive.  Matt and I were crying and praying out loud in the car the whole way and yelling at cars.
We thought our baby was dying.

We ran into the ER, our daughters following close behind.
We filled them in w/ what happened.
They insisted we fill out paper work before treating him, but then the nurse paid closer
attention to Josiah and rushed us into a room w/out filling out the stupid paper work.

The attending physician wasn't nearly as concerned as the nurses and our little family.  He said it was just a stomach bug.  I looked at him and w/ fire in my eyes I declared it was NO STOMACH BUG!  I informed him that the rice cereal had done this to him.  He disagreed w/ me.
The nurses tried desperately to get an IV in him to give him fluids, but his veins had collapsed because he was so dehydrated.  They even turned the lights out and used a special blue light pressed against his hands and feet to see if they could find a good vein.  They couldn't.  Our little peanut had vomited to the bile and didn't have an ounce of hydration left in him & was in shock.
To make a long story short, we were there for hours and when Josiah had finally recovered, we were allowed to go home.  His records showed that he had a stomach bug.
Josiah's Dr saw us the next day and agreed w/ the Attending Dr that there wasn't any way it could have been the rice cereal.  He also said the stomach bug was going around.  I trusted my Dr.  He told us just to make sure, wait a month and then try the rice cereal again.
We did.  We waited 30 days to the day.
Josiah didn't want the rice cereal this time, which seemed odd to me because he loved it so much the previous time.  But I forced him to eat 2 itty bitty baby spoons of it.
And two hours later while I was taking a single mom friend grocery shopping, I get a frantic call from Matt freaking out that Josiah is vomiting profusely again and to hurry home because I have his car seat in my van. My heart stopped beating and I sped home.
I HAD been right.  It HAD been the cereal.  The Dr's were wrong.  I had been far too trusting.

The Lord gives moms 'gut instincts' for a reason - to keep their babies safe!  So off to the hospital we went again.  This time, to a very nearby ER rather than the 30 minute drive to Children's.  They didn't know what was wrong either.  My Mother-in-law was the one that found the correct term "FPIES" through googling info for us.  God bless her!
After we were released from the ER, we called the DR and filled him in.

(I will say that even though our Pediatrician had never heard of FPIES, he tried to find doctors to help us.  He even got us an appt w/ a Dr that had a 4 month waiting list, the very same week.)
And so we began going to the crazy Dr appointments, sometimes weekly.

You can learn about FPIES here.

It's a little different for everyone, but most mommies find out about it after introducing baby food and ending up in the ER 2 hours later with a baby that won't stop vomiting until there's nothing left to vomit.  I was told by our Allergist that FPIES is so rare that a lot of babies end up in ICU before they figure out what's wrong.

FPIES comes with other annoying issues... and mommies slowly start connecting the dots to why our babies don't sleep at night.  And why they spit up so much.  And then we find extremely helpful communities like this one to help us learn how to help our babies guts heal.  Most moms are NOT okay w/ just hearing a Dr say "Oh they will grow out of it between the ages of 3-5, hopefully."  Are you kidding me medical field?  Are you kidding me? So my baby is supposed to thrive on just tube feeding formula until then? *sigh*

And so that is what we thought...that our baby would just be sickly for 3-5 years.  And I sank into depression.  No one understood what we were going through.  People at church didn't understand why we wouldn't drop him off in the nursery or why we never let him down on the floor (because there could be crumbs and we could end up in the ER in 2 hours.)  My friends didn't understand why I couldn't go hang out (because I'm depressed and exhausted and just want to stay home).  And I didn't understand how the Lord would make me lose so much sleep and expect my life to thrive.

Several months later we learned about the GAPS diet. I also learned that some people have FPIES into their adult years until they heal their gut.  So we began our GAPS adventure.  I was TERRIFIED, yet hopeful.  I felt like the Lord had led us to this.  When we began in January of 2013, Josiah had 2 safe foods and an extremely expensive formula that I wasn't sure was completely safe for him. Now, in August 2013, he has about 15 safe foods.  He still cannot eat any grains and probably won't for another year or more.  But he is eating nourishing foods and thriving!  His diet requires a lot of cooking and expensive foods and lots of weird looks from people...but you know what, it doesn't matter!  He is thriving!

So thankful for the GAPS diet and for mommas who are journeying through the same things with me.  I don't know any of them in real life, so I'm thankful for the friends I've made thru online support groups & blogs.

We celebrated his "Gotcha Day" a month ago.  Our friends threw us a Gotcha Party.  And my precious friend Hayley made him a cake... I will post pictures soon.

And in a nutshell...this is our FPIES story.  I just hadn't had the energy to post until now.
If you made it this far, thank you.  :)

Thank You Jesus for keeping our baby alive in a most life threatening situation.  Thank You for gut instincts.  Thank You for guiding us to the GAPS diet.  Thank You for providing me with just enough energy every day to take care of my family.  I am forever indebted to You my precious Sustainer.

Saturday, August 24, 2013

Miss this baby!

I wish I could have a coffee date with Jesus so He could explain why things didn't work out with MJ.  Cause honestly, I love him and miss him like crazy.  I pray for his new foster home often, for his foster mom & dad, for grace, for healing, for another respite visit.  This gift of mercy is hard.  Foster Care is hard.  But it is WORTH IT!

If you're a foster home w/in an hour radius of OKC and need a break, please leave me a message on here or email me @ tomorrows_memories at sbcglobal dot net.  Our family would LOVE to give you a break!

Monday, August 19, 2013

Josiah Matthew Morrow | cell phone pictures

Josiah Matthew Morrow
Cell Phone Pictures

I should be editing, but my sweet baby boy is asleep in my arms. He already took his nap, but he went back to sleep after I picked him up from his crib.  The crib that my sweet friend Kristin Botello has been loaning me since the day we transferred him out of his bassinet.  The bassinet that my friend Melissa Hall loaned me.

He's sound asleep in my arms.  I love this.  I will not edit.  I will hold him.  I will enjoy his breath against my cheek.  I will smile at the way his little lips make an "o".  I will listen to him breathing deeply.  I will thank Jesus for this moment.  And I will not put him down to edit!

Instead, I will share some pictures that are on my phone.
Just a few of my favorites!

To be continued...