This is Emillia's story as seen through our eyes...... Emillia was diagnosed with FPIES right before christmas of 2009 she was almost 10 months old. We have had our challenges, our ups and downs, numerous tears, and even some laughs through our experiences.
We have met some amazing people during these trialing times and we are very thankful for them and all that they have done for us!
Emillia is a very sweet vibrant little girl as you will learn reading through this blog. She is a trooper and always seems to have a smile on her face through even some of the hardest times.
Emillia has taught us many lessons in life already and i know she will continue to do so, she is our princess!

Emillia:
God grant us
the serenity to accept
the things we cannot change..........

Wednesday, October 13, 2010

Our journey to where we are today.....

            Emillia was born on Thursday February 26th 2009 at 1:04am.  She was 11 days over due and was delivered by emergency c-section, she weighed 7lbs 14oz and was 19 1/2 inches long. She was the picture of health but at 5 days old when we gave her her fomula bottle everything changed...... She would spit up ALL of her feedings, was very stuffy and congested, and wouldn't sleep. We had her in and out of the doctors office more than 5 times in less than 2 weeks each time being sent home after being told she had a simple "cold." During our last visit we asked M's doctor if she could possibly be allergic to her "dairy" formula and we were told she was too little to have allergies. The doctor agreed to do testing because she thought M had severe acid reflux ( this would explain her spitting up every feeding her doctor told us) However on our way home that day i stopped and picked up 2 cans of soy formula and switched her to that immediatly. The very next day she cleared up.......... She would still spit up during every feeding but was sleeping better and no longer stuffy. We had x-rays done still any way and acid reflux was ruled out.
              We coninued M on her soy formula still until her 4 month check up, that was when her doctor told us to put her back on regular formula "it was better" for her is what was explained to us. The next day her Dad decided to re-try regular formula seeing how "doctor knows best".... He gave her 2oz of forumla and waited 45 minutes, she was fine so he gave her the rest of 4 oz for a total of 6oz. Within 30 minutes she was projectile vomiting and soon became very lethargic, he put her in his truck and drove her to his parents-not far from our house- not knowing what was going on with her. She continued to projectile vomit and started to turn an ash grey when the ambulance arrived. During this time i was at work, it was Saturday July 28th of 2009 (i will NEVER forget the day) i received a phone call on the work phone which i never took calls on. When i answered it was M's dad informing me M was being taken to the hospital by ambulance and he wasnt sure what was wrong with her....That was enough for me, a million different things were racing through my head. I informed my co-workers through my tears that there was something wrong with M and that I needed to leave. I dropped everything I had in my hands and ran to my car.
          M's dad called me again and said the paramedics weren't sure which hospital they were taking her to at the time..... Once I found out which hospital they were taking her to I myself took off, the entire drive to the hospital i was again thinking of a million different things that could be wrong with her. I beat the ambulance to the hospital by more than 10 minutes. THAT was the longest 10 minutes of my life. I stood outside by the ambulance garage waiting for them to arrive. I could hear the sirens coming from miles away. By the time the ambulance pulled up i was pretty much hysterical. I rememeber them opening the doors to the ambulance and seeing my infant daughter strapped to the stretcher, she was a blueish-grey color and had a glazed look in her eyes-it was like she didnt recognize who I was. I can't describe the feeling I had when i first saw her, it was heartbreaking to say the least. She was taken in and blood test were started immediatly as well as an IV. Her blood work came back ok even though 2/3'rds of her #'s were off, this they could not explain. It was also mentioned that they believed she has having seizures in the ambulance and that if they had been much further from the hospital they would have intibated her....
          They admitted us that night and kept us until the following morning telling us she must have had a touch of the flu. She slept most of the day Sunday but when Monday rolled around she started screaming bloody murder, you could tell she was in horrible pain. I loaded her up in the car and started into town to pick up her grandmother. We were planning on taking her to Children's Hospital in the cities but couldnt make it further than 30 miles and ended up taking her to a hospital there because her screams had only gotten worse. Once in the hospital they again ran blood test, started an IV and did an x-ray. AGAIN her test came back ok and the er doctor wanted to keep her overnight for evaluation-not planning on running any more test. Once I heard this I informed the doctor that if they weren't going to run any more test that I would like to have her transferred to Children's. That was a flat no. I then informed the doctors' that i wanted release papers immediatly and that i was going to take her myself.  M's grandmother and I took off with her and ended up at Children's around 1am Tuesday morning. We saw an amazing doctor that night but of course by the time we got there she was so tired and wanted nothing more than to sleep, she had finally quit crying and was out like a light. Children's still ran blood work and admitted us overnight for observation. The following morning we were reffered to the allergy specialist in minneapolis where they did scratch test against dairy, egg whites, and egg yolks- all were negative............

1 comment:

  1. Oh My Dear Sheree... All I have to say honey, is I love ya! We have been friends since we were 4! You are a wonderful mother, the best I know for sure! M is so sweet. You look at her and think she's adorable, then you talk to her and you can't help but fall in love with her! I do not know what you go through, I can't even imagine. But, as a mother I do know how your heart breaks for your child, especially with what people would think as the "little stuff". Well, it isn't little to you, nor to M. I will never forget the first time I met her. You, "M, member I told you about Auntie Molly, this is Auntie Molly, can you say Hi please". M grins and tilts her head to the side (the thing about her is she KNOWS she's cute). me "Hi M... You are just too cute"... M "I'm a princess Auntie Molly". And she is! You are my best friend, always have been. You were there for me always, and I am always here for you, no matter what! Isn't it amazing we can go 10 years without seeing each other, and it's like we never lost touch. M is an amazing little girl, with amazing parents. through it all you have kept your chin up as best you can, and she sees that, and in turn she does the same. Like I said, I can't even begin to imagine what you go through, but I am a follower, and will always be a supporter for you, her and FPIES. So, my love, give M kisses from her Auntie Molly, tell her I love her, and can't wait to see her! I love you doll, and am here for you. You know this! Love you hon!

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