Happy 3 Months Beckett!

Hi everyone! We have had some pretty busy days... On Sunday, Beckett got his 3 chest tubes taken out. They say those are very painful, so I am happy those are gone. Once again, he did great. He also got to hang out with some very special visitors. Daddy brought his Papa and two older sisters and I finally got to see Coco after a long 18 days. We were lucky enough to enjoy a nice dinner together knowing Beckett was in good hands with his nurses. I look forward to the day we can all enjoy a meal together at our own home.

The team talked about extuabtion on Monday. I was very excited because Monday was his three month birthday. Beckett was put on the lowest settings on the vent and was tolerating it well. Monday they had a Physical Therapist come in that specializes with the diaphragm muscle. He created this test to examine how well the diaphragm is working to see if patients can tolerate extubation. Beckett's numbers were in the middle. Not great, but not awful. The PA thought he was ready. He was 24 hours in with the lowest vent settings and he was pretty much breathing on his own. However, Beckett's surgeon wanted to wait one more day and he calls the shots around here, which is fine because I fully trust him. I was disappointed a bit because my heart and mind was set on it coming out. I also knew that Beckett was really over the tube down his throat. Yesterday, I saw our transplant cardiologist. They looked at my ultrasounds, but it didn't show much. He said at 20 weeks, there could possibly be the start of something on his left ventricle, but not enough to be a red flag at that time. And since everything checked out at 20 weeks, the ultrasound at 35 weeks didn't really show his heart. So no answers there. In addition, he said the biopsy they took of his heart came back negative for everything they tested. Now we are just waiting to hear if genetics finds anything. There is a chance we may never know what caused this and we will never know why it happened to our sweet Beckett. But that's okay because he is strong and jumping over every hurdle that comes his way! He is truly a rockstar! Speaking of rockstar..channel 6 covered a story about sweet little Caitlyn, Beckett's number one cheerleader. If you did not get to see it, here is the link:

http://www.clickorlando.com/news/local-girl-runs-lemonade-stand-to-help-baby-get-heart-transplant/30660008

It truly melted my heart watching this. I watched it over and over. Thank you so much Caitlyn!

At rounds this morning, Beckett got another great report. They didn't want to change much because they really wanted to extubate him today. They had the PT guy come back for another diaphragm test. While waiting for him to show up, we got word that Caitlyn and Beckett's story was going to be on HLN! Thank goodness we get that channel here. We got to see it twice, so amazing! The PT guy showed up when Beckett was agitated. At first he got really low numbers because Beckett kept holding his breath, but then once he settled down he got a GREAT score!! Yea Becks! So at 2 o'clock today........drum roll......Beckett got extubated!!!!!!!!

He did great! I can see his face again! He is so stinking cute! And he got his hands free!! He has had his arms up just how he likes it ever since they were out of the restraints. AND I heard him cry!!!! It is very weak like a little birdie, but it was amazing to hear! Even better than the day he was born. I honestly didn't know if I would hear his voice again. It brought tears to my eyes. And daddy is happy because he says his vocal chords are working. We have started to work with him on taking his pacifer like he did before. It will take time though and his throat is pretty sore right now. My mom, sister and I had a nice dinner at Tijuana Flats (Thanks PB)! I couldn't wait to get back to my Beckett and just stare at him some more! When we came back to his room his night nurse said they are going to take one of his central lines out! Another thing soon to be gone! Then next will be his arterial line. I think then I can hold my son again!!!!! Agh can I say that again?!?! I might be holding my son again very soon!!!!!

All of this good news could not be possible without all of you. Every text, call, fb post, fb pm, blog comment, card, gifts, gift cards, love, positive thoughts and most importantly prayers. It's still a long road ahead of us. I can only take a day at a time and today was a GREAT day! This week OT and PT will be coming in and helping Beckett. Their goals will be feedings and muscle strength since he has been lying in bed for 3 weeks. Wish us luck! Oh, 1 week left for t shirts if you would like a #teambeckett shirt.
https://www.booster.com/futurerockstar

Much Love,

Joe, Taylor, and Beckett

#teambeckett #futurerockstar #onedaycloser