Bliss

First of all, many of you have asked how the Festival of Trees event was... it was AMAZING! The room was so much bigger and more beautiful than I could have imagined. I was beyond nervous but I think I did okay, ten minutes is a really long time to talk! My biggest regret was that I wanted to really convey to Claire's doctors how thankful that we are for them but every time I started to talk about them, I got emotional and my brain turned to mush ... hopefully they got the message anyway!  There was so much that I had intended to, but forgot, to say.  Here are some pictures.

Claire's heart surgeon, Dr Nuri 
and her general surgeon, Dr Acierno

Claire's Great Aunt and Great-Great Grandma
came to support us, her Grandma was there too!

Everybody fell asleep on the way home.

And we finished up the first of Claire's dresses!

Here it is compared to a typical 3mo dress 
- narrower and longer.

I think she likes it!  Not bad for the first one,
a few tweaks and we should have a few more soon.

And now for some more exciting news ...

Today was amazing!

I was sharing with Justin yesterday, on the eve of our appointments today, that I wish I could pause time. We had had a mini-break from appointments (except for PT) and Claire seemed to be doing so well. I was nervous about what today might bring and wanted to stay in our "bubble of bliss" for as long as I possibly could.

We started the day with a 3 mile jog while brother went to his sports class and then we watched him at his swimming lesson.  There is a 24-year old boy with Down syndrome who swims while Levi does and Claire and I had a nice little visit with his mom!  I love little "glimpses into the future" like these and she enjoys talking to Claire and remembering what it was like when her son was a baby.

After that we took a care package to a sweet little six year old girl at Mary Bridge who is having some trouble with her kidneys and, of course, Levi remembered the playroom and we couldn't leave the hospital without a quick trip there. We ran into one of our favorite nurses and had a few other reunions along the way to make for a fun little visit. The volunteers fought over who got to hold Claire first, it always blesses my heart to see how loved [and remembered] she is!

As you might remember, we were given the green light to start feeding Claire bottles with a preemie nipple about two weeks ago with quite a few rules in regard to length of feeding, listening for certain noises/cues, etc. and then to give the rest of the feeding through her NG tube. She was doing so well after about a week that when she pulled out her NG tube (for probably the 100th time), I decided just to leave it out and see what happened.  She did great like that for another week taking all of her feeds with the bottle so on Saturday I decided to try breastfeeding!! Obviously, we are trouble when we get a break from appointments ;). But she DID IT!  Five and a half months of pumping day and night, feeding tubes, feeding pumps, preemie nipples, oral stimulation, speech therapy and this girl is BREASTFEEDING! And this only added to my feelings of nervousness for our appointment today - I didn't want anyone to burst our "bliss bubble."

Well... her GI Doc came in, I excitedly shared the news of what I had done and thankfully, he was excited too!! We talked about whether or not we wanted to do another swallow study to check for aspiration and we both felt like, at least for now, ... ignorance is okay for us! She is happy, her breathing is good, she's gaining weight (11 pounds 2 ounces!!!), and for the first time in her life there are absolutely no surgeries on the horizon (all of this means the G-tube is off the table... at least for now!)!!! I'm all for enjoying these moments while we can and am so glad that he understands and feels like that's okay.

We also saw our favorite surgeon today - Justin affectionately calls her and Dr. Pickens "the A team" because we are just so thankful that we ended up with them on Claire's team! We feel beyond blessed to have such amazing people taking care of our little girl and truly believe that they're the best. She moved Claire up one more size with her dilators (14) but moved her dilations to every third day (from every other). She wants us to introduce small amounts of pear juice to help Claire with her, still irregular, bowel function and we only have to irrigate if she goes 48 hours without stool - yay!

And more big news ... we don't see them again for SIX (yes SIX!) weeks, I'm still in shock ... to go from being in just their clinic alone 2-3 times each week for the better part of Claire's life to getting to take a six week break, I don't even know what we're going to do with ourselves. It felt like a graduation so, naturally, we needed a picture!

Claire gets some vaccinations tomorrow morning that were delayed because of her blood transfusion. Vaccinations are harder on her body but they're extra important for her too. She got a pretty high fever and little cold after her last set so, hopefully, tomorrow's go well!  And then we have PT on Wednesday at the CTU - this is weekly now ... and that's ALL we have this week as far as doctor appointments <3!!

I cried on the way home today - We have driven that route countless times and I realized as I was driving that today was the VERY first time we have done it with only good news to reflect on!

At least for today, living right here in this moment ... is bliss <3.