Day 165

Well... our first few full day at Vandy was ummmm... interesting. Bella was not on good behavior and I know just enough about her medical history & condition to be informative to some and annoying to others. We didn't make too many new friends today but did find great comfort in a wonderful social worker and inspiring pastor so mentally & spiritually we came out okay. Medically, we are still working on that...

Today reminded me again just how spoiled rotten all of us were with our nurses and respiratory therapists at Centennial. I am giving the benefit of the doubt that with time we will find great ones here too. However we did not today and the day was long. I came to the realization that my beautiful, sweet, tiny baby can be scary to some people. She may come across as pissed off and huge in comparison to the other babies. I also realized that at a teaching hospital they like for the residents & students to learn how to do things themselves, not by the mother of the baby telling them how the baby likes things to be done, doing things for them or diagnosing the baby for them....From my last blog you can tell that things went really, really well the first day so I have no doubt that we are in the right place, it is just going to present a new set of challenges and daily frustrations each day for everyone involved.

With all of the quick vent changes this week Bella's left lung has deflated. Her saturations have been horrible today. The good thing is I heard speculation on many different conditions that could be causing this and possible treatment plans instead of she just has really immature lungs. All of the testing and a definitive care plan are still in the works so I don't want to put too much information out here until they get back to us on many things. She has some definite issues that could be causing her worsened lung condition like the pulmonary hypertension. I do know that we are holding off on the trach surgery as the ENT team feels like she needs to stabilize more and also want to do some more testing to make sure she needs it. After today I think they are correct.

We are scouting the hospital for good primary nurses. I have been showing off Bella like a used car and cramming photos of her being adorable in many faces. We have 1 so far and she will start next week when her other baby gets discharged (THANK YOU MOLLIE!). We have a feeling she is going to be pretty terrific. Anyways I am praying that the Lord will send the right care team to us as He has in the past.
I met the pediatric pulmonologist (lung doctor). I hugged him and told him we were going to be best friends. May have scared him to0 as he informed me they would only be working with me when Bella got the trach and got closer to discharge. I told him that is what he thinks and that if he doesn't come by for regular visits I would stalk him down. It worked, he brought a team by today to answer questions and meet Miss Bella. He is very kind and promises regular return visits if only to answer my questions and prevent me stalking him in the hospital.

I am praying that today goes a bit more smoothly. I am praying that I have the right attitude as well to continue doing what is best for Bella- to know when to shut up and know when to speak up, it is a fine balance here. I am praying that she recovers quickly from this setback. I am praying that the right care team comes into place. I am praying that Chris & Dylan can keep on track even though I am not with them much now and they both know how much I love them. And as I pray I am reminded that even though I may not trust in those around me or even myself at times I can ALWAYS trust in the Lord and if I just stay in constant communication with Him all will be well. He and I will be having many conversations today...So here goes day 165 of our adventure!

Much love to all
Telisha