Light

Yes, there is light at the end of the tunnel! This last week Paxton has improved SO MUCH that we are able to start talking about him coming home! Yes, I said... COMING HOME.  Can you believe it? I never quite knew if that would ever happen, but now hopefully it is a reality and in a few months our cutest little bug will be here at home with us! He still has quite a bit of growing to do, his G-tube and nissen surgery, as well as more eye check-ups and possible surgeries. But he is doing great and we are so happy with his progress.

Paxton has made many developments in the last 2 weeks that I am so excited to share:

***The biggest milestone of all:  Paxton came off the ventilator! Yep, that's right. He had two "mask trials" the two days before and was doing so well breathing on his own, he would fight it when they put him back on the ventilator! He liked doing the work by himself! So on Sept. 19th he had been on only oxygen and humidity flow from his trach mask for over 24 hours and they WHEELED that ventilator away! That was exciting. And scary! (no back-up breaths or pressure support anymore!) But Paxton's heart and lungs have been doing great. As our doc explained to us, Paxton will have this new attachment of oxygen and humidity as long as he has a trach. :( That was kind of a bummer but we will take it. He has been so much easier to maneuver and he is so happy not having all those hard and non-movable pieces right up by his face. The mask and tube are much more movable. Now I can pick him up or sit him up in his bed or on my lap and let my little guy see the world. And we both love it! It has been great!***

Speaking of how much he didn't like that ventilator tubing, we had a crazy experience last Thursday. Paxton was coming back from his eye exam in the OR when all of a sudden all of his stats kept dropping, heartrate, oxygen, etc. The RT looked down and realized Paxton had pulled his trach out! They quickly got it back in and all of his numbers came right back up, thankfully. That is how much Paxton was hating that tubing, he would pull at it every time he was awake. This current tubing is much more soft and movable; I don't think it bothers him half as much. It made me a little nervous as Mom though and gave me this feeling that I will have to fight for Paxton to have a monitor sent home with him. It won't be enough to have him in the same room, my eyes will have to be on him at all times! How else would I know if that little trach came out and he wasn't breathing anymore? Ah, scary to think about. Not quite there yet. But on a more positive note, what a strong little dude! I'm so glad he's feeling good enough to be a little feisty and show us all who's the boss!

Trach with ventilator tubing

Trach with new mask and tubing

No we have not changed teams, a loving uncle gave these socks to Paxton to "remember his time in the Foothills", so I took a picture for him, and it just turned out too cute not to share! It also shows his new mask well.

Paxton had another tube changed as he got a bright new yellow feeding tube that goes through his intestines, past his stomach, to prevent painful and risky reflux. He is still getting all the nutrients and calories he needs yet never has a full feeling. Sad for him! He has been at 5 lbs. 6 ounces for quite some time so the nutritionist has really been trying to figure out what they can add to his milk to help him grow more regularly and stable. We are waiting for that magic last pound that will allow him to have his gastronomic surgeries and move on!

Pax is on all oral meds now, getting nothing through IVs, although he still has his PICC line into his heart for his upcoming surgeries. He has been slowly weaning down on his pain meeds, showing he is progressing and feeling less pain...ah, grateful!

Dave and I finally got to hold him again just a few days ago; it had been about 2.5 weeks! His big incision and broken rib made it so we could not hold him for quite a while, and before that was the pneumonia (of which he seems to be fully cleared of again)! So we have loved every minute of that and it seems Paxton always does, too. He definitely knows mom and dad and grandparents' faces, too, and will stare at us longer, and over all is having more calm and awake periods. It is so reassuring and great to see him not grimacing so much every time he is awake.

His chest tube scar has cleared up very well, and his bandages from his incision are off, with only some body glue, tape, and stitches left. But overall he is healing well. His scar is much bigger than we thought! Just another war wound for him to brag about to his big brothers some day. 

Speaking of brothers, last Friday our nurse gave us some tickets to the Fair, which we took our boys to and they loved. We left late and wanted to go see Paxton again while we were in SL and we expected the boys to fall asleep in the car and just take turns going in to see him. Mackay was out before we started the car and Camden was so tired but he heard us talking about Paxton and kept saying, "I want to go see Paxton." The kid really meant it! Camden was so tired but I asked him, "Do you want to come in or stay here and sleep with Daddy?" He replied, "I want to go with you to see Paxton." It was so cute. I said, "OKAY!" and at 11 pm at night, after an active day, I walked into the hospital holding Camden Spiderman's hand to go up to see his brother. Besides all the "Why do you have your child up so late" stares, I was beaming inside that this little guy had so much love for his baby brother he couldn't stand not to see him when he had the chance. And he had always wanted to show him his costume, so this was the perfect opportunity. We did the whole drill of scrubbing in, Camden had a few soft and tired words with Paxton, and then he passed out on the chair. It was tender though. Love all these meant-to-be-brothers boys.

Look at that little face! Oh I think he is going to have just as much personality as his two animated older brothers.

My first time sitting Paxton up, Friday, was so fun!

Posing with Mommy. Already he knows the drill.  Good boy, Pax!

Our spirits are in great shape. I loved the Relief Society conference last night and felt like everything they said we should be doing are all the things everyone has been doing for us! I am itching to be doing more for others right now myself! I seriously daydream everyday of the things I can do to thank people that have been offering so much service to our family. So many ideas have come to my mind and I hope in the meantime people know how OH SO VERY GRATEFUL we are! I really can't believe all that has been done and continues to be offered for our family. It has helped lighten our load so very much. So thank you all. Those words sound so hollow and ordinary for the true impact we feel behind them. I hope it's never felt to be taken for granted or under-appreciated. If I have ever seemed that way it was only because I was too tired to convey how much it really means, and if I have ever done that to any of you, please forgive me! I'm so grateful for every single one of you, and every single act of service. Every ride, meal, babysitting, cleaning, yard work, cookie, note, email, the list goes on and on and on. Unfortunately it is way too public of a thank you until I am able to make the more personal efforts I would like! But it is all of YOU who are amazing!

I'm so in awe of all the people that I hear are reading this little blog right now. I'm just amazed at the interest people have in our lives and to know more about our sweet little Paxton. It makes me hope so much that I can do justice to this little hero of mine in sharing his story and triumphs. Some days I'm just so tired and it's harder to get myself in the car to do the drive and routine to get into the NICU, but always the second I get there with Paxton a whole light and joy seriously just fills my being and I am so happy to meet with his sweet little spirit and tender body, to touch his hands and head and whisper I am there, and hold him all the day long if they would let me! (Which no of course they never will! 2 hours is the most we ever get...and that is a great gift!) But I love to take care of him. To do his cares and clean his trach. To sponge bath him and work on his movements. To massage him and do therapy for his senses. To sing to him and pray with him and read to him. Mostly to be taught by him. He teaches me so much. I would never have it any other way. I know it will be work. But he is here for so many reasons and I am so happy he wants to be. So happy his Father is letting him be. It is worth every effort. I can't wait for you all to meet him. He is my hero. The biggest champ in this little tattered but strong and fighting body. What a giant! We love you with all our hearts, Paxton boy!

The last final improvement to share this week is that Paxton moved back into a big boy crib again yesterday! Hopefully for a lot more than two days. :) Hip hip hooray for improvements! Today is a good day. Thank you all for your prayers and efforts and love. We love you all so much, too!

One of the best moments/videos yet!: