Ryan & I are exhausted and it's only Wednesday. Last Friday we were given some tests to have done for Juliana before she is admitted this coming Monday. Over the weekend we figured out who would do what, and we also decided that we needed to get other input in on the G-tube issue. I spent the weekend emailing Juliana's current speech therapist, the fabulous Laura, and Juliana's former speech therapist, the equally fantastic Peggy. Both ladies have been extremely helpful this week as we prepare for next week and have helped us come with questions to ask and given us access to other resources that are out there. I also made an appointment to meet with Juliana's pediatrician to get his input.
One of the disadvantages of being a teacher is that I have limited access to the phone, so while I made phone calls on Monday during my plan period, I had to leave them Ryan's work number since there was a better chance of speaking to him than to me. On Monday Ryan came home with a bunch of sticky notes of information, along with some more tests for us that we needed to have done for Juliana. What was once a little hill, was growing into a mountain.
We needed to get a urine sample from Juliana, which isn't easy when 1. your baby isn't potty trained, & 2. your baby doesn't drink much and doesn't have many wet diapers. The doctor's office had given us several bags and suggested we bag her overnight to have the best chance of getting a sample (on Friday, I had hung out at Children's for an hour and a half with a bag on her hoping she would pee-which she did not). The bag kept coming off in the night, so it was becoming ever more frustrating on getting a urine sample.
Yesterday we met with our pediatrician. Dr. Russell is a very nice man and he met with us for an hour- we had the last appointment. He was patient and waited for me to write things down in my notebook and would spell things out for me as well. When he found out that we needed to get a urine sample and had been failing at it, he warned us that Juliana wouldn't like his way, but it would get the job done. He had one of his nurses run a catheter in her. I was the lucky parent who got to restrain our little girl while she screamed like I never heard her scream before (Ryan had a hard time with this part). During this part, Dr. Russell took Noah for a tour of the office and played soccer with him in the hallway.
Ryan was able to get the remainder of her tests done today, so that part of the stress is off. I am still trying to get my plans ready for school next week, and finally found a substitute who has a science background so that my students won't be doing "busy work" for the days I'm out of the classroom. We are both still very stressed, and even the smallest things have set us off. Please pray for our family as we go into this. We could sure use it. We want to make the best decisions possible for our little girl, and we still don't know what to do.