I am starting this page to keep people more informed and to spread her story. I feel our journey is just beginning and that in order to make it through all this we need a lot of prayers and support from friends and family. May 1st 2014 my life changed forever. God brought this little 6 pound 1 oz bundle of joy into our life. She was perfect in every way. As the days passed on she lost a little weight which was normal for babies at first, but around 4 weeks when she kept losing we starting to realize something was not right. it was at that time i started supplement feeding her in hopes more calories would mean more weight. Little did i know it would not help either. So our journey started with weigh ins every Monday and Friday although the numbers didnt really change much it made the family doctor happy. After that we started blood work ups and a few things off here or there but nothing they could tie together. In Aug. we started seeing a pediatrician instead of a family doctor and he was not happy at all with her weight and started ordering more test. Aug 25th we went in for a weight in and ended up in Devos childrens hospital for a week During that week they did a few test but in the small time we were there they did not uncover anything other than she was not gaining weight and labeled her failure to thrive. They questioned my a million times on my feeding habits with her and put in a NJ tube that bi passes her stomach and goes into her intestines and did a full metabolic work up. The day of discharge one of the head pediatricians came in and told me this tube is all she needs it will give her a jump start i dont see anything else wrong. So they sent me home no follow ups, no referrals just told me to follow up with home doctor if we had any issues. Well we got back and started weigh ins in tuesday after labor day and very slow weight gain and some weeks we saw loses. My doctor decided to take it into his hands to get referrals into metabolic, gastro, and neuro (due to poor muscle tone in upper body). So october 7th we saw her metabolic doctor and they had somethings come back abnormal but nothing they could tie all together one thing wrong in one category and one thing wrong in another. So she told us that she wanted us to see gastro before she did anything further testing because she feels there was more to saides problems than her metabolic/genetic issues. So we went back home and began waiting on October 13 we met with gatro for our first initial visit and got her cystic fibrosis test (which came back negative) done. At that visit they put her on a new formula which is 48 dollars a can elecare which seems to be working a little better. they also ordered a lot of blood work, a gi scope with biopsy, swallow study and speech therapy as her oral feeding is getting worse. So we went back home and sadie started running a fever on the 15th of oct a low grade one so i thought nothing of it, but it continued throughout the weekend and on monday the 20th they ordered blood work because she was not getting any better and weight gain was slow. On tuesday we were back in the doctor with 101.6 fever and he decided to do a blood culture and UA to check for a urinary trac infection or some other form of infection. Well wednesday we got the call that she did have an infection in the form of bacterial along with urinary trac and a kidney infection so they started her on antibiotics come friday she lost more weight and still running a fever so he decided to do an ultrasound on her kidneys to look at whats going on. Within an hour of her ultrasound being done they called me and told me that she has fluid of her kidneys and also they are measuring smaller than they should be at this point in the game so he put a call into U of M and we should know more by monday morning. So here we are on 10/25/14 a week away from six months old weighting in at 8 pounds 10 oz. I ask please for prayers as we go down the road its a scary one and i dont know how we could do it without God, the support of friends, family and the medical team taking care of her.
Posted on: Sat, 25 Oct 2014 12:09:17 +0000
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