February 16, 2012

We went to see Evie’s pediatrician yesterday.  We’d been hoping some issues would resolve themselves, but after last week being considerably worse, it was time to try something new.

About five weeks ago, Evie caught a little cold.  She barely struggled for a few days and was back to her normal self, except that she could not take her full feeds without throwing up.  We were forced to drop each feeding by an ounce. We were able to get it back up by a half ounce in a week, but could never get her back up all the way.  Last week she was throwing up a lot more with quite a bit of mucus. We dropped her feeds again, but she would still throw up a considerable amount throughout the day.  The secretions in her trach also went way up and we were suctioning almost non stop just to keep her airway clear.  We started her reflux meds back up, hoping that would make a difference, but without too much improvement.  We devised a plan with the pediatrician to start with stronger reflux meds and see if that helps. We’re wondering if she is refluxing into her esophagus so much that her body is overproducing mucus to coat the throat from the acid.  If this does not help, we’ll next try a round of antibiotics in case there is a sinus infection. If THAT doesn’t show improvement, we will then try allergy medications to see if there is potentially an unknown allergen that’s causing this.  I will also be cutting dairy out of my diet in case she is reacting to that in my breastmilk. Please pray that we see huge improvements with the reflux meds. As long as she is throwing up, she will not grow at a good rate (she’s already fallen completely off the charts for her weight and is only in the first percentile for height), it could cause damage to her esophagus, and it will more than likely increase her aversion to eating and swallowing.

Our other reason for wanting to see the pediatrician is that on Saturday, Evie developed a rash around her mouth. Ty and Aleyna were eating peanuts and we believe Aleyna touched Evie’s face with the peanut dust still on her fingers. The other possibility is that the probiotics that I put into her feeding (that was then thrown up) reacted with her skin.  Unfortunately, there is no accurate allergy testing available for infants, so we will avoid peanuts in the house and change to a different probiotic to be safe.  The good thing is that if she were to have a severe allergic reaction, her breathing would more than likely be safe with the trach as swelling in the upper airway, mouth and tongue would not affect her breathing at all. Also, we already keep epinephrine in the house for when she gets her RSV shots (in case she has a reaction to that).  Our little Evie likes to keep us on our toes, that’s for sure!Watching Daddy and Sister Playing Outside

One more thing: her ears are starting to look goopy again.  Please pray we can last with these tubes a bit longer before they need to be replaced!

On a positive note, our pediatrician felt Evie LOOKED great! She’s certainly not wasting away or feeling particularly ill.  She’s smiley, energetic, and looks very healthy. She just hates throwing up and has very fussy times during the day.

Thank you all for your prayers. We hope we can get these issues resolved quickly and get our little girl growing again!


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