Garrett's the only one

A fun little story... 
When Garrett was little and in the NICU, we noticed that he loved Tigger! Whenever he would watch 'Winnie the Pooh' he would almost always smile and laugh over his vent at Tigger. For the longest time we couldn't figure out why he loved him so much...and then it occurred to us : The most wonderful thing about Tigger is he's the only one - which was exactly the same for Garrett! We have been a lot of places, and have spoken to lots of doctors, and everyone has always mentioned that they have never seen another child like Garrett before. Someone who has survived this long with such complicated airway issues, and a child that needs a PEEP of 20! He really is the only one. He's amazing.

Cute Garrett hanging out with our fav PT Barb 

in his cute Tigger hat his grandparents brought from Disneyland

(this was taken when he was 7 months old)

We are so happy that we made it through the entire weekend with his 1 peripheral IV and that we didn't have to poke him to get labs. Because of his heart condition AND because he has been poked SO much in his life, it is not easy to find good veins on Garrett. So when we have an IV that works longer than 2 days, we are SO happy. Pokes are not fun. And I swear they are still the thing I hate watching the most. This morning, we took him down at 10 am to get a new PICC line placed. We were trying for an arm this time, since he got a clot so fast in his PICC in his leg, we knew we didn't want one there. He was gone for a little over an hour and came back with one in his right arm - yay! Poor guy, I honestly can't even tell you for sure how many PICC's he has had...I want to say 9 or 10, WAY too many.

The nicest thing about having a PICC line is when labs need to be run, or meds need to be given we can do it all while Garrett is sleeping. It's just one poke for the line, that they put him asleep for - and then we can have a much safer way to give him all the things that he needs. A change we made since I last updated was we stopped his feeds for 24 hours. We still have been having issues on and off with him absorbing food very well, and we were also concerned that he may not be absorbing his narcotics as well. So we switched all of the meds we could over to IV and we gave his tummy a nice long rest for over 24 hours. That seemed to help a lot. 

Tonight he seems very comfy, and happy! He's had a little bit of a sleepy day today, but with a major surgery coming up in a couple days - rest is what he needs. Here is a darling video I took of him just a couple hours ago. Love seeing this boy enjoying a good ol' Disney Sing-A-long!


Dr. Green stopped by this afternoon to see how Garrett was doing. Sounds like we are still all set and planning on Friday morning for his surgery. He will be the first case, so most likely start around 7 am. He showed us some really neat photos of Garrett's 3D airway splint. They have been made and are actually in Utah right now at a factory getting sterilized. It takes about 3-4 days and they will be back here by Wednesday. Crazy...I can't believe we are almost there. I know I will never feel ready to send my baby in for such a big surgery...but knowing that this could really help him AND that this is his chance at coming home, in a way I feel ready for it to be here and get him all better. It was so nice seeing him so relaxed today...it makes my heart feel good. I seriously cannot wait for the day that I can wake up and not have to leave my house all day and get to snuggle him at home. I didn't get the whole 'hang out in pjs all day with a newborn' so I will create my own 'my baby is finally home after over a year and we are staying in pjs'!