Excitement in the Trost House!!!

There was a lot of drama with Jaime's care today...I'll get into that in a minute, first let me just share the wonderful news that the Tooth Fairy will be visiting our house for the very first time tonight! Just a little after 10:00 P.M., Jared came running down the stairs to tell me that he lost his very first tooth. (Only Jared could manage to bump his wiggly tooth on the bookshelf to knock it out on accident! HA!) Moments later, when he realized it was bleeding, he started freaking out. Tom and I thought it was so cute. I took this picture shortly after the "freak out."






Once the bleeding stopped...which happened rather quickly for Mr. Hemophiliac, he asked me if he could "call people." So, he called his friend Connor and both sets of his grandparents and we texted Uncle Scott and Titi. What a big deal! HA!
So, what does the tooth fairy leave these days? Well, I did a survey, it's $5 for the first tooth...it goes down from there. Jared asked me what I used to get, I told him Lifesavers and $.50 (sometimes $1...we had a cheap tooth fairy...just kidding mom and dad). So, he asked me if I thought he would get Lifesavers, too. Well, guess who went out at 11:00 P.M. to get him a package of gummy Lifesavers....HA! (I might have stopped at Biagio's for donuts, too while I was out...YUM!!!)
Then, before he went to bed, he said he wanted to keep his tooth instead of having the tooth fairy take it, I told him he'd better write the tooth fairy a note...it said
"Dear Tooth Fairy,
Please leave my tooth in my bag because I want to keep it forever. Love, Jared Trost"
HA!!!! He actually has a tooth pillow with a pocket in it that I found at the gift shop in Cincinnati. Needless to say, the Tooth Fairy has come...leaving him a note, $5 and gummy lifesavers in return! Tee, hee!!! Can't wait to see what he thinks when he wakes up!

Now on to Jaime....there has been lots of discussion as to how to proceed with Jaime's care. Yesterday, we had decided to follow up solely in Cleveland. Well, today, Michelle from Cardiology in Cincy called. We spoke about Jaime's episode on the way home and how he has continued to have a few brady and desat episodes. I also told her how he's been sleeping a lot more the last few days. She ran everything past Dr. Hirsh (cardiologist), he feels there is some cause for concern, as this is not "normal" behavior for Jaime. They are strongly suggesting we come back down for an appointment in the near future. Tom and I are both afraid of traveling with Jaime again. Michelle said that they might end up doing a heart cath and our turn around back up to Cleveland may not be within 24 hours, therefore it may be easier on Jaime. Neither of us want him to have the heart cath if we can avoid it. So, now we're stuck between a rock and a hard place...not really knowing what to do. There is a HUGE part of me that wants to just see the cardiologist up here, have everything done here and sent to Dr. Hirsh. Michelle is going to call me on Monday to see how the weekend went. Since talking to her, Jaime has had 2 brady episodes, one with a desat, one without. Otherwise, he's been great. Once again, after the sun went down we took Jaime outside. We put him in his outside swing...either he was completely bored with it or really liked it...either way, he fell asleep in it.



So, that's my update for today...the drama continues....Silly us, we actually thought things would get easier being home. HA!


In other CDH news:

Back in Cincy, Carter is starting to get better from his major desat episode Tuesday, he will hopefully be extubated again Sunday or Monday. (Thanks for calling me tonight, Carrie, it was GREAT to hear from you, I miss seeing my CDH buddy everyday!)
Gia is working on her feeding issues and is getting closer to being discharged.

Now on to our CDH friends down in Texas, Jackson is stable on ECMO and the drs. are thinking that his liver is down which would be one positive thing when it comes to surgery.
Finally, Kamryn is getting ready for discharge...possibly on Aug. 3rd, her Mommy's birthday. (Finger's crossed)
Please keep these and all CDH families in your thoughts and prayers!

As always, we appreciate your comments, emails and continued support. From what we understand and are learning very quickly, the CDH roller coaster doesn't end when you leave the NICU, it just has lots of twists, turns, ups and downs along the way. Totally worth every curve to have our little Jaime!

Before I go, I'd like to wish my Aunt Karen and Uncle Carmen a very happy wedding anniversary! Hope you had a nice day!

Until tomorrow...