We’ve Got an Answer and the Next Step


Yep, back to where we started 6-7 weeks ago. Isn’t that life?

So, we got Evie tolerating a slow continuous feed of plain breast milk and then they gave us a pass to head over to the Ronald McDonald House for a few hours to see how she did. It was supposed to be a four hour pass and we didn’t even make it three hours. About an hour after we got there, she started coughing horribly and needed constant suctioning. She got very very fussy and gaggy and we couldn’t get her to calm down, so back to the hospital we went. Within 10 minutes, she was perking up and her secretions settled down. That seemed to make it pretty obvious to us that allergies were definitely the culprit. The reason we didn’t realize it before is because she had that trach infection at the same time. Basically, it was the perfect storm of too many things going on. It was great to be able to do a controlled experiment to figure out the cause of the excessive vomiting.


We were discharged yesterday afternoon and drove back to my parents’ house and are heading home today. We were a little scared that the Zyrtec they prescribed wouldn’t do the trick, but it was the easiest drive we’ve ever had with Evie! She seemed so much more comfortable, didn’t throw up, needed very little suctioning, and slept very hard for the first few hours.


We’re also excited to see how this helps with Evie learning to eat. While we were at the hospital where she was much less junky, she loved sucking on crackers! She’ll do this occasionally at home, but usually she’ll take just a couple tastes and be done. She sucked on crackers for probably a half hour once! So so amazing!

And in other big news, we met with the plastic surgeon on Wednesday. He said most people have about a 2mm difference between their upper and lower teeth, but Evie has a 10 mm difference. I figured he wouldn’t be able or want to do the jaw distraction for at least 4-6 months at the earliest, but he said he could do it in SIX WEEKS! Ah! We’ll hopefully hear next week about an exact date, but the plan is that she’ll have the surgery to cut the jaw and place the pins and spend a few days inpatient and then we’ll spend 2-3 weeks hanging around Cincinnati coming in daily for the screws to be turned and plastic surgeon to monitor the jaw lengthening. Then it will be 6-8 weeks home for the jaw to harden. After that, we’ll head back to Cincinnati for a surgery to remove the pins, scope her airway to see how it looks, and take her tonsils out.

We’re just moving right along! Thank you for all your prayers. We are so grateful for all the support as we walk this journey!


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