our sweet Emilia.

Hi. My name is Alison and I have FOUR kids now ๐Ÿ™‚

I hadn’t logged on to WordPress since my last post 2 years ago almost. Time has flown and we have been blessed with yet another amazing child. Our fourth, and final babe was born in June of 2017.

em

Emilia Elizabeth. A perfect 8.3 pounds. She came on her due date and came out with a wink and smile, showing off her adorable dimple. A red head I might add. Four kids and the only ginger. I sat there counting fingers and toes the night she was born. Like every other one of my babies. Thanking God for their perfect little bodies and health. I wondered like most mothers how I could get so lucky. What I would do If something were wrong. Surely I wouldn’t be able to handle it. Surely I was given healthy children because I wasn’t capable of the emotional side effects of a non healthy child. I will forever praise my in-laws for their parenting, personal, marital coping skills while going through my husbands Cancer when he was 10. I still will never be able to understand the level of anxiety, fear, love that they dealt with on a daily basis. The mind block and ,mind SET you have to have. Compartmentalizing your life just to get through a day. All of this brings me to today. What compelled me to write a blog post after nearly 2 years?

My husband and I used to joke around when I was pregnant and say how calm, easy and “go-with-the-flow” she would be. She was a fourth child, there for she would have to be easy. We thought. We imagined her personality being sweet, calm, quiet, friendly, everyone’s friend. When we picked her name, we even found a website that listed those same qualities. We knew it would fit. She would be the light in the room. Make everyone happy and be a lover. When she was born she fit right into our expectations. I wasn’t expecting her fiery red hair..that was new ๐Ÿ™‚ Having my last baby never sleep, ever, I was delighted to have her start sleeping 5-6 hours the night we brought her home. She really was our perfect little baby. That was until week 2. Colic set in. Or so we thought. Whatever Colic may be, Doctors don’t really even know. She was screaming, SCREAMING bloody murder far more than the text book 3 hours, 3 days a week for 3 weeks. It was an all day event. We literally couldn’t leave our house. She would scream in the car, she would scream wherever we were. No consoling. I had 3 other kids on summer break and we couldn’t leave our home. The first 3 months of her life were absolutely exhausting. I couldn’t find the good in anything. I was exhausted, bitter, angry, short tempered and not myself. It was hard to see who she was or who she was becoming because it was masked by crying and neediness. This breaks my heart. Knowing what I know now, looking back. My sweet baby had no other way of communicating what was wrong or how she was feeling. My oldest, who is now 11, had a milk protein allergy as a baby. He couldn’t handle my breast milk and by age 6 months I switched him to Neutramagin and he was 100% improved. Colic gone, pooping normal. Happy baby. At age 1 year he was successfully on whole milk. Emilia was sensitive to everything. Everything made her gassy, she started only pooping once every 7-10 days. I took her to 3 pediatricians. I ended up educating 2 of them on things I had tried that even they didn’t know of. I felt hopeless and frustrated. I was offered no help. If another doctor told me “Oh, they are babies and they cry. Colic sure isn’t fun” I was going to punch them. My baby was in pain and I couldn’t help her. Our parents wouldn’t watch her because they were scared of her. She refused a bottle and screamed. WHO would want to?

Slowly as 3 months approached we began to notice some improvements in her crying. It wasn’t ALL day. She was still extremely needy, but not as colicky. I tried cutting out some known items from my diet for breastfeeding but honestly couldn’t tell a difference. I decided I was DONE breastfeeding since I had basically been doing it for 3.5 years now and tried formula. NOPE.ย  She wouldn’t even get a drop in her mouth. 6 bottles, 3 different formulas. NOPE. So that was out. She was gaining weight normally and starting to get happier. We got a referral to a GI specialist and was put on an appointment list for 6 months from then.

And then it became time to try out solids. She was 5.5 months. It was my moms birthday dinner at home and we were so excited to try out Organic baby oatmeal. Not sure why I tried that instead of Rice cereal..but it looked good. Instead of thawing out some of my breast milk I thought it would be easier to useย  some Neutramagin formula to mix with it since it was in the cupboard. Hopefully fill her little tummy up some more. (Note- she had stopped sleeping good at 3 months. She now sleeps in hour increments cue eye roll.) We all sat down, put her in her high chair and she ate like a champ! She loved it. Thank goodness. I was so happy she was actually showing interest in food. She hadn’t up until then. She ate quite a large portion of the oatmeal mixture I made. After dinner we did bath time like usual, pj’s, nursed and then off to bed. At this point she was sleeping about 3 hours initially and then up every hour or so the rest of the night. Usually screaming from stomach pain, gas and farting. I usually have to massage her belly in the middle of the night. After she had been asleep exactly ONE hour after I put her down I saw her squirming and crying. I was so frustrated. I went in and put the bink back in and walked out. She continued to stir and cry. It had been EXACTLY 2 hours since she ate. my husband and I laid down to go to bed when I heard her choke. I got up immediately (she is still in our room) and started panicking. She was vomiting HEAVILY. I flipped her over and patted her back as she threw up all the oatmeal. Covered the entire crib. It didn’t stop. She kept heaving. Her eyes would bug out and she was struggling to heave and throw up. It was not baby spit up, it was not projectile vomiting. It was full on adult style vomiting. I panicked and switched the light on and ran to the bathroom. My mom was in the living room sleeping and we all huddled around her in the bathroom. She was exhausted and scared. She had no fever, I knew it wasn’t the flu. She hadn’t been exposed. No one else was sick. I thought of the oatmeal. I knew it had to be something with that. She continued to vomit every 10 minutes for 4 hours. All that was left was Bile. We almost went to the ER. She became cold, lethargic and almost non responsive. Being my fourth kid I didn’t want to run to the ER for no reason or be “that” mom. I should have. She slept that night on my chest as I was TERRIFIED. In my life I had never heard of nor seen a baby throw up that way. I was on my phone all night googling.

6 month old. Oatmeal. Vomiting. Surely something or someone has blogged about this. And I was right. Here began our F.P.I.E.S journey.

I had never heard of this before. I began reading a blog post that sounded exactly like the one you are reading. I thought “OMG this is my child” I read the bit about the first FPIES reaction. It was what happened to Emilia. I knew it. Everything I read further and further seemed so spot on.

FPIES (pronounced: F-pies) is a severe delayed food allergy reaction in the gastrointestinal system (the gut), it is understood to be a T-cell mediated (Non-IgE immune) response in which food is considered a toxin to the body.

Shock. What I didn’t know what was happening to my tiny baby at that time, was that she was going into shock. Her body thinks any and all food/milk protein is a toxin and rejects it. She vomits until she goes into shock with lethargy, low blood pressure and body temperature and unresponsiveness

I called her pediatrician the next morning and left a message stating what had happened. She wanted to get an upper GI. She immediately was thinking a block in her upper GI. Again, don’t ask me how, I knew this wasn’t the case. I couldn’t explain the type of traumatic vomiting that she had done to anyone. They assumed threw up once and done. I researched pediatric GI clinic in our area to try and get in sooner. I got in to a ARNP at a local PGI. I went in, explained “my story” he listened. I brought up FPIES. He had never heard of it before. He googled it and said he was 90% sure she didn’t have that. I trusted what he thought and said and let it go. He ordered a Celiac panel and food allergy testing. I sat there and restrained my 6 month old while they poked around to find a tiny vein. They weren’t able to get “enough” out for the food allergy tests so I would have to go back. A week went by and they wouldn’t give me results of the Celiac on the phone. As nice as the ARNP was, I didn’t feel he was knowledgeable enough to treat my baby. I scheduled with the Doctor. He had 20 plus years at Marybridge Hospital as a Pediatric GI Dr. I explained “my story” again. Though, this time I did not tell him that I thought it was FPIES. He kept smiling at me as I spoke. I stopped and apologized for having an hour long story of my child’s life. I was desperate for someone to understand. For someone to tell me what was wrong with my child.ย  He could tell. He said ” I know exactly what is wrong with your daughter.” He said is so matter of fact. I said “YOU DO?”

“Your daughter has FPIES.” I started cry laughing and said how I had come to that conclusion myself. I was crying because I was so incredibly happy to have a diagnosis. I was soooooo happy to hear someone knew what was wrong. Because that’s the first step. I had to immediately stop all foods for her. Nothing. Not a single thing other than my own breast milk. I had to eliminate all top 8 allergies form my own diet. No Dairy, no eggs, nuts, soy. Literally nothing. I went home and researched the CRAP out of it. I started crying again. It wasn’t good. Not a good thing at all. There are support groups for this specific syndrome. My anxiety grew by the second until I put down my phone and just stopped.

Another annoying fact about my husband and I. We used to joke around about kids with food allergies. We had never experienced it in our lives before. We would get frustrated when a note was sent home for one of the kids classes that they couldn’t have nuts in their class. We thought it was a lifestyle choice their parents were choosing for them, not a life or death situation. It was an inconvenience in our lives. I am so sorry mommas. I apologize for my naivety. My own daughter cannot eat. Like, she can’t have anything or she might go into shock. We have to start food trials in a couple weeks with her allergist. I fear I might need Xanax to get through them. We trial one specific food for 9 days. If she passes it is considered a “safe” food. She will/can have a vomit to shock reaction from any of the foods in which we will have to go straight to the ER. The fear of Failure to Thrive is very near to us now as she can’t have anything other than breast milk. She cannot have formula either. She can have a special kind called Neocate and that’s running $50 a can. If she will take it.

Now that I have eliminated everything from my diet, literally, she is HAPPY. No more massaging her tummy in the middle of the night. No more gas. She still doesn’t sleep, still doesn’t poop normal but her personality is what we projected on her those 6 months ago. She is hilarious, smart, so funny and so feisty. There are still days she breaks out into a full body rash. I go crazy trying to figure out what I ate that gave her a reaction. I will never know. But we know what’s going on, we know the steps to take to start this long, exhausting, scary journey.

em

I have only told close family and friends about our discovery. I didn’t want to be “that” mom that was over sharing about their child’s food allergies. I finally got over myself and realized that by writing this..I could help another mom googling at 2 am trying to figure out what is wrong with their child. I could post this on my personal facebook and MAYBE a friend has experience with this and could help. I am spreading the word about FPIES because it’s terrifying and not well known. In the meantime Emilia is currently lighting up every room, making people laugh, smiling from ear to ear. She truly has brought SO MUCH INCREDIBLE joy to my family. She is the little being we didn’t know we needed and I am so so happy she is ours.

 

If you made it to the end of this blog thank you. From the bottom of my “momma” heart thank you.

kids

 

Advertisements

Going Back to Work-A SAHM story.

It’s been an emotional few months to say the least. After taking a full time job opportunity in the medical field and leaving my comfortable “stay-at-home-mom” gig, I feel like my emotions have been all over the board. Being able to stay home with your children is such a privilege, and obviously, not everyone is able to for one reason or another. And that’s totally fine! I got to have a little over 3 years with my babes and it was MAGICAL.

MAGICAL: -exciting, hard, discouraging, encouraging, exhausting, relaxing, empowered, chaotic

Anyways, it’s been fun. But the opportunity arose for my husband to pursue his passion and nitch. He enrolled in Grad school and is getting his aster’s degree in teaching. He plans to teach high school History.ย  I could say I am proud of him, which is true, but I am really envious of his ability to change careers and go for what he really wants. That takes courage and strength in a whole different way. In order to support him and make the next year and a half go by much easier, I took this new career opportunity so he could be home with our kids, and get his school work done at times other than 12 and 1 am.

The first few days were awesome. It was like all the things I did complain about, about being a stay at home mom were fixed. I got to drive alone in the car???? This had bee a foreign concept to me for many years. I actually got to listen to what music was being played on the radio- which that excitement lasted 2 hours in traffic when I realized it’s crap and very repetitive. I got to go talk to other adults all day. This was so exciting as I pride myself on being a very social person ๐Ÿ™‚ I got that little “break” every day away from the house, away from the dishes and cleaning and screaming. And then, real life sunk in about 1 month into working. I realized I was never going to get to be home again with my youngest at the age he is right now. It hurt so much! I knew he was well taken care of and getting some awesome bonding in with his dad, but me! What about me?! We had been inseparable for almost 2 years now. I remember driving home about the 3rd week of work and just bawled. Turned on whatever sad song was playing- not Justin Bieber- and bawled. I think I cried the entire drive home which is an unpleasant 50 minutes. I thought about all the milestones I was missing, the laughs, the nap time rocking, the owies he was going to get without me being there to make it all better.

Once I got a hold of myself, pulled it together, approximately 1 second away from our driveway, I felt better. I needed to grieve my former job, former self, former life. I only cried like that once. Sure I’ve gotten teary eyed a few times here and there thinking about things or hearing things I’m missing, but I needed that 50 minutes to myself to wallow. And I think that’s OK. There is no book for the emotions and trials you will deal with when you go back to work. Well there is probably LITERALLY 100 I’m sure but…not my point.

Basically things have changed and we have all adjusted. Was my husband as scared as I was to make this transition? Absolutely. Is he still figuring things out every day like I am? Yup. The pressure we all have to do our best at every “job” in life or title is so exhausting. We feel the need to be the best student, the best mom, the best wife, the best employee. We are all just figuring shit out and doing the best we can! Well most of us ๐Ÿ™‚ My husband, has completely won at stay at home chef, and maybe needs some improvement in stay at home house cleaner ๐Ÿ™‚ ๐Ÿ™‚ ๐Ÿ™‚

I have re-learned the expression TGIF. I have now cleverly changed it to TGIFF. You can probably guess what that means. My weekends are SACRED. They are golden. I now appreciate Saturdays and despise Sundays just like the rest of working America ๐Ÿ™‚ My husband has now forgotten what day of the week it is. I have to now brace myself in the garage before I walk in the door. I am flooded with “MOM, mom, MOmmy, MAMMMM, MUM” before I can get my purse or shoes off. “Listen to this song I learned, listen to me read this new book, watch my new trick, look at my owie I got today, he hurt me, sign this now please, help me with my homework, why can’t we go to the park? why don’t we ever do anything fun, you never are home, can I go play? Look at this giant mess I just made!” …..etc etc etc. Then when all I want to do is go change out of scrubs and into my sweats, my little one wants to be glued to my hip. I have to stop and appreciate this because I actually have MISSED him all day. It’s such a battle in my head between what I want to do and what I feel like I need to do. UGH. Soccer games, school functions prettyย  much take up my non working time, and then I get left with the guilt of not having time to myself- me, Alison. I am hoping time will heal all…LOL or at least help me get my sh*t organized!

I love what I’m doing, and I love helping patients heal. I love my new co-workers and I love the providers I get to work with daily. I keep getting asked “Do you like working better? Do you think it’s easier than staying home?” The answer to both of those is yes and no. Yes I enjoy working, helping people, interacting with adults and meeting new people. No, I miss my kids, I miss being able to have my own schedule, I miss having more patience with all of them. Yes, I think in some respects it is easier to work than stay home and a big NO at times it is much easier to be a stay at home parent than work. The debate is dumb and shouldn’t even exist. Every day is different and everyONE is different. I will say, my husband has an entire new respect for me and what I did now. He expresses it daily ๐Ÿ™‚

So that’s what’s been going on around here lately. I apologize to any friends, parents, people I have ignored or forgotten to call back over the past few months. I have been a complete scatter brain trying to figure this all out and learn TIME MANAGEMENT all over again!!!

**Thank you all who have supported us/me as a family and individually in making this transition for both Brent and I, and the kids as easy as it could be!!**