Thursday, April 12, 2012

My heart hurts

Today is such a lovely day outside.  Bright blue skies, white wispy clouds and birds chirping.  My husband is off work this week and we decided to make a family run to Home Depot for some flowers to brighten up our neglected flower beds.

...Let me back up, though, about two days.  Its been over 2 weeks since Livvy has consumed any carrots. We 'passed' after two weeks of trial with a two-day break I built in the middle.  It seems that her reactions really are obvious after a break.  I thought two days was sufficient.  I was wrong.  And looking back on our other bad outcomes the time between consumption of a particular food was longer than 2 days.  Its been more like a week or two.   Perhaps that's how we'll have to work trials.  Which, unfortunately, will only allow us to trial about one food per month.... and that's assuming there's no bad reactions that her gut has to heal from.  So getting back to what puts me at today...  two days ago I started giving her carrots again thinking everything was fine.  The night before last was a rough one.  Liv was up about every 90 minutes overnight and restless in between.  Assuming it was a teething issue, she got carrots again the next day.  Yesterday her overall disposition was OK and poop looked maybe a bit 'off' but not alarming.  Seemed in line with my assumption of teething symptoms.  Overnight last night was no fun.  NO FUN.  Restless, couldn't stay asleep and the poor thing had fits of inconsolable crying.  When she'd finally get to sleep she would have her eyes clinched shut and she was whimpering.
So this morning she seemed at least less miserable, but I could tell from the two poopy diapers this morning carrots were going to be a no-go.   Livvy's cheeks tend to be a good barometer of a reaction as well.  They get very bright red and break out in bumpy patches.  You can watch her over several hours as her cheeks get brighter and brighter like somebody is turning a dial.   I noticed that we were starting to see some red cheeks by late morning and knew we were headed for trouble.  Liv had a bit of spit up randomly as well.  Still, she was acting fine at the time so we decided to go to Home Depot and let L pick out some flowers and try to have a decent family morning.
We got through about 10 minutes of shopping and the poor baby irrupted.  She started crying in the store and I knew she must have pooped (again).  Five minutes later, we were figuring out how to leave the store to get to the car and change her.  The hubbs took the girls out to the  car and I ran through the check out with our couple of things already in the cart knowing we probably were going home at this point.  By the time I made it to the car (MAYBE 10 minutes after she went) Livvy was screaming.  SCREAMING.   I'll spare you the gruesome diaper details, but it wasn't good.  That 10 minutes with that evil carrot-containing poo against her skin left her with patches of skin that were just gone.  Just bloody holes where her skin had once been.  What wasn't bleeding was raised and welted.  
My poor baby was screaming and crying so hard I thought she was going to hyperventilate.  She was just writhing in pain from that diaper change.  She was screaming so violently she was shaking.  My heart was just aching.  My baby hurt so badly it was taking her breath away and I had to make it worse to clean her off.
The next few days will be long.  We will battle mucous diarrhea and blistering diaper rash.  I can already tell her reflux is flaring.   Livvy won't sleep well.  She'll be exhausted on top of everything else.

I'm just so sad.  I was really holding out hope that we were going to be relatively 'lucky' and have our short-ish list of triggers and be OK with everything else... instead I think we are falling into the category of just having a short-ish list of safe foods and having everything else be a fail.

I try and maintain optimism, and look at the bigger picture.  Heck, I try and maintain humor.  Not today, though.  Today, my baby is hurting and my heart is hurting right along with her.

2 comments:

  1. Hi... You just posted on my questions on the baby center forum (Thank you!) I can't tell you how relieving it is to connect with a mom who knows this journey. As I read through this entry I just wanted to cry with you. I know so badly just how badly you're hurting and how devastating, frustrating, discouraging FPIES is. I've noticed lots of rashes and "yeast-like" infections with my little one. She screams and screams with those diaper changes too. She has never gotten diarrhea from a reaction but they do cause a rash. And her first 6 months of life she had an open wound diaper rash on her bottom that I just could not get to heal (tried EVERY cream, ointment and prescription). And of course, doctors also thought I was crazy for worrying so much about a "little diaper rash." These little ones are so strong. It blows my mind how strong they are. When I was pregnant we had a few days where didn't know (early on) if I was going to miscarry. I remember sort of hearing this still small voice say "mom, I'm gonna be ok" The other day, feeling discouraged, I was reminded of "mom, I'm gonna be ok." And you and me, we're going to be ok too. I now this is a month or so back so I hope your little one is feeling much, much better.... I'm going to go read more of your blogs to find out!

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    1. Thanks so much for the kind words! The BBC board can be sort of slow-moving at times (we ARE busy FPIES moms after all... lol.. probably cooking several hours out of the day!) But it really is an amazingly supportive group of ladies. There is a Facebook FPIES page also. I believe it is private, so you'd have to send a pm to get ok'd for the page. And yes- Liv is much much better now and I'm hoping we stay that way ;)

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