Addies Condition

Well  my c section was rough as H E double hockeysticks. I seriously felt like they dropped me off the table while I was put under or something , I was in alot more pain then my previous c sections. The blood loss didn't help either..

I had my c section monday night and by thursday morning I was just itching to get outta there. Thursday night was the best night ive had in 3 months. I remember the moment vividly. I was lying in bed; next to Blake with Addie on my chest. Balling. But the good kind, the kind after you have a baby and you are so over come with emotions, I was SO happy. I remember telling Blake that and thinking how great life was going to be with this new addition that made me so happy, as my older boys are currently driving me batty haha!

I told my mom the next day that it was so much easier this time around, I didn't have a cancer diagnosis looming over my head like i did after Ryker, Addie wasn't stuck in the NICU for 2 months after like Jaron, I got to bring her home, she was nursing wonderfully, we were bonding, my post partum hadn't hit me ..yet.. Until that phone call.. 

I got a call from the Childrens Hospital saying Addies PKU heel prick came back with abnormal results and we were to come into the hospital the following Monday... so my mom watched the boys and i packed up my 1 week old little girl and made the 3 hour trip, after just having abdominal surgery! She got an echocardigram done and an EKG,

they took more blood then they were "allowed" because of her weight in order to get all the testing done they needed, they strapped on a plastic bag to her to collect urine to test that too. We waited around all afternoon for the results. I was sore and boy were my feet swollen! The Dr. met us in the hall and told us that there was one test that came back just barely over the "normal" amount but what she thought Addie had was a metabolic disorder called LCHAD. She seemed normal and healthy but she wanted to be extra cautious as a case had happened in Europe where the little girl was sent home with what they thought was a false positive and presented to the ER at 6 months old with Cardiac issues. We didn't want to leave it to chance so they sent away for a genetic test that would take 6-8 weeks for results but would give her a definite false positive or diagnosis.

those 7 weeks of waiting were HELL. There is no other way in putting it. Blake left to go start work in Fernie, and we put our house on the market . I had no husband and had to keep my house clean for showings and a sick baby with a possible health issue so rare there was no other child in Alberta being treated for it. It makes me sad looking back that I didnt get to enjoy her being a newborn,that i wasted that precious time ill never get back.

After a week here by myself i was going crazy and decided to pack up what stuff we needed and head to Fernie to be with Blake. Addie got this crazy rash which we think was heat rash and then had a low grade fever later in the evening. Our dr instructed us to take her straight to the Er with our protocol letter if she wasn't eating, throwing up , or had a fever. So i took her to the Fernie hospital, where they are NOT equipped for anything baby let alone anything as rare and special as what Addie has. They were going to call a team from Cranbrook and put an IV and transfer her but i had left Blake home with the boys and didn't want him to miss work, I convinced the drs to send all the info to Lethbridge hospital and we would drive to Glenwood drop the boys off and take her to the hospital in Lethbridge that was a little more equipped for babies. We spent the night and her fever didn't return. They discharged us the next morning after her blood tests came back within normal range and the drs were comfortable after talking to our Drs in Calgary.

Suffering from anxiety while having a child with a medical issue is probably one of the hardest things ive had to endure, If you know me at all you know ive had to endure a lot of trials lately so this one is definetley the icing on the cake. Not to mention not having my husband here has been almost unbearable. There are nights i didn't sleep at all with my hand on Addies chest as my mind had convinced me she was going to stop breathing. Nights I would spend hours googling things that could happen, complications of her condition, blaming myself because this condition is passed on from both blake and I being a carrier and me being responsible for her potential suffering. Crying over the fact her life is going to be so different then i had imagined for my little girl. Grieving the loss of a healthy child is difficult. I am less in denial about my anxiety and post partum which is better i think. the more people who know the less the stigma and the more people watching out for me i guess. I deserve to be happy and Addie needs to be strong. Hiding and not properly dealing with it will  not make me strong.Addie may have a lifetime of struggles ahead of her but she needs a healthy example. 

We got the final diagnosis of TriFunctional Protien Deficiency which is very similar to the suspected LCHAD.

She is missing all (or part we haven't done further testing yet) of an enzyme that helps break down fats from your food. They switched her over to a special formula, which i was definetley singing O Canada as we dont have to pay for it and each can is close to 85$ and she goes through a can every 4 days.Because she cant break down the fats she relies on her limited glucose supply for energy. She cant fast or her body will start to break down her muscles in search of energy.We are not at feeding every 2-3 hours during the day and 1 , 4 hour stretch of sleep at night, which i never actually get the 4 hours as my anxiety casuses me insomnia, so thats nice. because she cant break down thefat she eats it can start to build up around her heart and liver ; along with a whole bunch of other things that could happen but we dont know how severe it is yet or how it could her effect her body.

I'll include a few links to some very limited articles on her condition

here and here

i follow a group on facebook and there isn't even a 1 in however many statistic but their best guess on their records is 1 in 8 million. She is our special little girl. We also found out the bleeding I had is a symptom of being a carrier for TFP;  not the presumed placental abruption all the drs seemed to be freaking out about..

it took me a long time to get over being upset at Heavenly Father. That i was going to have to to see my little girl in pain, that I had been through enough crap ; I had to start looking at it in a positive light. Addie was sent to me for a reason, Heavenly Father trusted me to love her, to take care of her. He knows how special and rare she is so it is a privilege to be her momma.

She is doing well as of now - many trips to Calgary are in our future, but i am glad they were able to catch this early on and have excellent drs to take care of her!