The little things in life

We are adding another food to our "see you later" list.  We trialed squash which led to sleepless nights and not-so-fun diapers.  It's so frustrating.  Especially when I have people telling me that she is 8 months old almost, she should be eating food!  Or when our daycare provider is constantly on my case about figuring out a safe food for her because "she's starving all the time".  I think she just feeds her anytime she's fussing.  =/

With Thanksgiving this week, I feel that it's necessary to think about the little things in life...the GOOD things in life.  I am blessed with 2 amazing children who make me laugh each and every day.  I love the way that Cody says "I need my mom" all the time.  Brynn is crawling now and she crawls to me no matter where I am and just puts her hands on my feet and looks up at me, like "hold me!!"  Then comes the huge smile when I pick her up.  I'm thankful for my husband, who may not be totally with me yet on this diagnosis, but I think he's really coming along...seeing more and more of what I'm talking about and realizing that we actually have a problem on our hands.  I'm thankful for being able to nurse as long as I did with Brynn and now I'm REALLY thankful for formula, which has helped her grow...we are now wearing 3-6 and 6 month clothes people! =) We don't have any completely SAFE foods yet, but the formula is doing it's job.  I'm extremely thankful for my mom.  She helps out so much...every time daycare is closed, she's there.  She's even there to take Brynn over night when I need a break because I can't function at work after those sleepless nights.  I feel very lucky to have gotten an appt with Dr. Helm on 12/7.  I thought it would be a longer wait, but we could get in in a month!  I'm also thankful for the BBC moms who have led me onto the correct path (Dr Helm) and have answered my millions of questions when I don't quite understand a symptom/reaction etc.  THANK YOU!!!!!!
 A few more:  -taking a nap with my little boy (LOVE Sundays)
                     -a good nights rest (meaning only having to wake up 2-4 times a night) Notice a theme here? LOL
                     -Really warm socks
                     -Diet coke
I think that's enough for now.  My point is this:  Even though there are many frustrating things going on with Brynn right now, there are good things in life that I can't forget about.  There are so many unknowns right now and it kills me that I don't know/understand what is going on in her tiny, little body.  We are going to stop all food trials until we see Dr Helm on 12/7.  That will hopefully give her some time to heal and get back to 'baseline'.  Plus, he will hopefully have some answers and perhaps a plan of attack.  Aside from everything going on right now, I'm so thankful for the life I have!  =)

Bananas

Well, we began our banana trial on Friday.  Brynn really doesn't like to be fed with a spoon!  She took a couple small spoonfuls on Friday and a couple more on Saturday.  After those initial bites, she turned away and pursed her lips together, wanting NOTHING to do with them.  Sunday, I tried using a mesh feeder.  She LOVED it!  She cried when it was gone! I didn't give her more though--I was nervous that it was too big of a jump in quantity. 

Fri/Sat night I noticed a couple hours after eating them, she got the hiccups.  No other symptoms though.  Sunday, no hiccipus, but she was literally up EVERY HOUR throughout the night.  Sometimes she would cry and was difficult to console, throwing herself around, stiff as a board.  Other times, she would just look at me.  As much as I dislike waking up all night long, she is so dang cute when she just looks at me and plays with my face! =)  It's hard when she is so upset though.  That part sucks.

I was so tired at work all day on Monday.  Luckily, my mom offerred to take her overnight for me.  What a lifesaver. It was AMAZING to sleep through the night...well, sort of. I woke up about 3 times wondering why Brynn wasn't awake yet.  I brought her to my parent's house, and waited until it had been 2 hours after eating her bananas (too make sure they stayed down).  I went back home once she was about to go to bed and I was home just in time to say goodnight to Cody too.  He kept asking where Brynnie was though...he missed her.  (so cute!) My mom said she was up every hour on the hour again, and also awake, screaming, from 2:30-4 and again from 4:30-5.  Ugh.  Poor baby and poor Grandma!  We also noted a small diaper rash. 

So last night, we didn't give her anything.  She slept soooo much better, only waking up to eat pretty much.  YAY!  So, I'm thinking we will get her back to baseline (normal), and then try bananas again.  Another helpful FPIES mom suggested that I try cooking the bananas first...it apparently breaks down some of the proteins so it's less for her to do on her own. 

When it all began...

It all started when we began giving Brynn solid foods.  When she was 5.5 months, we gave her her first taste of Gerber rice cereal.  Not a big fan.  She spit it all out, made faces, and cried. I tried it the following evening, assuming she just needed to get used to the taste/texture of something else.  She didn't like it again.  Until this point, she had nothing other than breastmilk and an occasional bottle of formula at daycare if I didn't pump enough the previous day.  The next day, I figured I'd start with some baby food purees, so I could mix it with the cereal...she tried sweet potatoes, squash, bananas, pears...and she did fine with all of them (only had them 2 days in a row before moving to next food).  So after all of that, I decided to have her try peaches...I figured she would just love them considering how she gobbled down the other fruits.  However, this time I decided to add a little cereal to her food (maybe secretly hoping it would help her sleep longer..shhhh).  She ate it sooo fast..it was just gone in no time, I couldnt' get it in her mouth fast enought for her!  Danny was gone (hunting I believe), so Brynn, Cody and myself just hung out after supper. We were playing in their bedroom, and (exactly 2 hours after eating), Brynn projectile vomitted EVERYWHERE.  My first thought was OMG, poor thing...she's sick!!  So I called Danny and told him, he said he'd be right home.  5 mins later, EVERYWHERE again. I had just changed her, and it happened again.  Cody began whimpering, wondering what was wrong with his baby sister...I just tried to explain that she's sick and needed mommy to hold her and help her...that was good enough for him and I quick turned on a cartoon for him to keep him occupied.  I changed her again and wrapped her in a blanket to hopefully keep her jammies clean so we didn't have to change anymore.  I was holding her in my arms and she just closed her eyes and went to sleep.  I thought, ok she must be totally worn out from all of that!  She then sat up (eyes still closed), and began throwin up again (this time I had a bucket to catch it in)...all while her eyes were closed.  She was good for about 10 mins...Then she sat up, gagged, spit out some mucousy junk, tried to open her eyes and they just sort of rolled back in her head...I assumed she was going back to sleep.  After almost an hour and a half of that, she was done.  She stayed asleep for the next 4-5 hours (very unlike her), woke up, nursed and went back to sleep...from then on, she seemed totally fine. Danny and I both took 1/2 days at work so one of us could be home with her at a time.  She was irritable the next day, but that was nothing new.  Since she was about 2 months old, she had terrible, awful screaming fits-totally inconsolable.  She didn't want to eat, she didn't want to be held, she wasn't tired...just screamed and threw herself around.  She actually had my mom and myself in tears numerous times because we didn't know what was wrong and didn't know how to help her.  Eventually, she would calm down...some of these lasted up to 1.5 hours though.  Ugh. 

So after seeing that it probably wasn't the flu, we waiting 4 days and tried sweet pototoes with rice cereal again.  I figured it was some sort of reaction to the peaches since it was a new food.  Nope.  Exactly 2 hours later, same exact thing happened.  I brought her to the dr the next day.  They had no idea what was wrong with her...referred us to a pediatric GI specialist in the cities. She also said to wait a few more days and try again.  We did, I gave her peaches again...nothing (totally forgot that they previously had rice cereal in them).  Tried a few days later with sweet potatoes...nothing.  I figured it was just a fluke that she got sick those 2 times, but kept the GI appt just in case.  A week later (no food since the sweet potatoes), I had an epiphany.  I remember that the first 2 times had rice cereal mixed in.  So I tried sweet pototoes with rice cereal....2 hours later, here we go again. Puke everywhere.  Danny even commented that he thought she was throwing up bile. 

This began my google search.  "Vomitting 2 hours after Rice cereal".  This is where I read about FPIES for the first time.  I started really researching and it sounded just like her.  I found a wonderful forum with parents of FPIES baby giving advice and told our story.  Everyone said, yes it for sure sounds like a classic case of FPIES.  They also recommended bringing some info on FPIES to the GI appt because not all dr's really know a lot about this.  I got info ready and called the GI office and asked if the dr we were seeing knew about FPIES--they said he was familiar. 

So off we go to the GI dr ready for some answers and a plan of attack.  Not what I expected.  The papers when we left said "?REFLUX? ?FOOD ALLERGY?"  and we were prescribed a reflux med.  BLAH! This is not reflux!  I was so mad. I asked him about FPIES.  He said no way, there hasn't been blood in her stools.  Ok, so away we went. 

I talked to a couple moms on the FPIES forum and they suggested just getting an appt with an allergist (Dr. Helm--he seems to be the one who knows most about this and takes it seriously).  I checked with our insurance and we could totally make an appt without a referral! So I did.  Now we wait...wait until Dec 7 when we see Dr. Helm. 

In the meantime, we are going to start our first food trial.  Tonight, Brynn will try some bananas.  I'll let you know how it goes!!!!