Exciting News!

First, I realized in reading back through our blog posts that I never shared the results of Claire's kidney tests - oops! As I said before, her kidney ultrasound came back "abnormal" but I didn't have all of the information at that time to pass along so here it is ... she has bilateral dilation of her kidneys and her left ureter has a thickened wall. The VCUG didn't give us super clear answers because they weren't able to get her bladder as full as they would have liked but they didn't see any reflux on the study which is great news! So the plan is just to repeat the renal ultrasound in a few months to make sure that things are improving.

This morning, Claire received the first dose of her monthly RSV shots, the nurse told us that they are more painful than other vaccinations and I think she's right because Claire cried herself to sleep afterward; I held her in the office for a while and she just wouldn't calm down, she cried the whole way home, and then we laid together until she fell asleep.  Poor baby! But because catching RSV would definitely put Claire back in the hospital and could put her life at risk, all of her doctors agree that it's worth it!

Then this afternoon, she had a feeding evaluation to see if we can start feeding her by mouth again. She did AMAZING! It's been about 8 weeks since she's had anything by mouth so we weren't expecting much but she knew exactly what to do, latched onto the bottle and drank 1/2 an ounce!! We had to stop her about 8 times because her coordination (suck, swallow, breathe) needs quite a bit of work but it is such a great start!!!! From now on, we get to start each feeding with letting her try to eat with a preemie nipple. Our feeding therapist, Kristin, taught me all of the things to watch for to make sure that she is swallowing safely and we have to limit her feeding by mouth to only 5-10 minutes (which is about 1/2 ounce at her pace), taking lots of breaks as needed, and then we will use the pump for the rest. We are all so excited for another step in the right direction!

Reflux is still a big concern and she heard quite a few episodes of it during our appointment today. Kristin shared the results of the pH study that we did in September with me and over the 23 hour period, Claire had 81 separate episodes of reflux! The longest episode lasted 7 minutes and many of the episodes lasted for minutes at a time.  11% of her reflux went all the way up to the top of her esophagus and, with her low tone, she said that this could be going all the way back into her nasal passages so we're escalating her reflux therapy again and trying to decide if we can manage her reflux just with medication or if she will need to get the Nissen fundoplication procedure done with the G tube.

Claire is 6 weeks post-surgery on Monday and we can't wait to start "re-entering" the world in a bigger way. We will still be very careful through flu/RSV season - yep, I'm the hand sanitizer police ;) - but I'm excited to start introducing her to so many special people!! It breaks my heart, although the therapist says that it shows great neurological development and understanding of what's happening; but as soon as Claire sees a new face, she instantly starts crying. We know that it's because she associates new faces with pain (from spending so much time in the hospital and at the doctor and not really seeing anyone else) but it's still hard to see. I'm excited to start showing her that new faces are awesome! So if you've been anxious to meet Claire [and you're healthy!], it's time ... she needs you <3.

And for some BIG news ... I received a phone call yesterday morning and was shocked to find out that our family was nominated by Claire's doctors to be the "featured family" at their annual Bridge Builders / Festival of Trees Event at the Greater Tacoma Convention and Trade Center. After the shock (and tears!) wore off, she shared the details with me ... We will be representing the thousands of Mary Bridge patient families at the event and sharing Claire's story. It is an event to honor their donors and we will be speaking for 8-10 minutes in front of physicians, surgeons, volunteers, and donors. I already have butterflies in my stomach but we know that this is a fantastic opportunity to share Claire's story [God's story!] and to thank all of her amazing doctors!  The event is Wednesday, December 3rd so you can be praying for us for that, public speaking isn't [even close to being] a strength of mine so I will be reciting this to myself over and over again over the next week and a half:

2 Corinthians 12:9

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

We wish you all a restful weekend full of laughter and love!  Thank you for cheering us on, we are cheering for all of you too <3. 

Hebrews 12:1b-2

"...let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God."