Oh Boy!

Paxton has been doing so incredibly well. We have all joked that he would walk right out of there if he could. He has been loving sitting up, looking around, interacting with people, tolerating therapies incredibly well, and overall just been very comfortable and content. Mom and Dad, grandmas, and some special others volunteered and completed the trach, CPR, and g-tube trainings with us. We even roomed in last week (where we care for Paxton in a family room there in the NICU for the most part by ourselves, with most of his home medical equipment there to practice with) and had him do his 'car seat trial'. We have all been running around a little crazy this week preparing for the big day. People helping with errands, heavenly neighbors literally "detailing" my home, making phonecalls, appointments, and finishing forms and notes of all kinds. We have been planning for him to come home today so we could have Dad home for two weeks in a row, a chance for all of us to go through this big transition together. However, this weekend, par for the course of the NICU, plans have changed again.

I could hardly believe it when Paxton did not have a good day Saturday and officially, yesterday, his homecoming was postponed. He suddenly has a few things going on. He has some painful granulation tissue around his g-tube :( and is having some med problems. Paxton's secretions have also significantly increased (when I say this it means we are suctioning his trach very often and it is very thick, making it much more difficult for him to breathe). Normally when this happens, it is not long before we learn Paxton has developed another form of pneumonia. We were crossing our fingers that it was just from a new type of trach he got on Friday. Unfortunately, yesterday he spiked a fever, giving them enough reasons to do get cultures and do labs, and postpone his 'departure'. I am so sad. So sad for him. So sad for us. For his brothers. Everyone helping. Sad for the process to seem unending. It has been my biggest worry that soon after we get him home he will end up right back in the hospital from getting an infection... I'm beginning to wonder if he will ever go very long without them. I will hope so! He has only been off antibiotics from the last bout for 2 weeks. And he seemed SO healthy and happy! It was Paxton in a light we had never seen before, because he truly felt so good. Now I just ache seeing him all upset and uncomfortable again.

We do want the little guy to have the best 'healthy start' ever, so it is best to wait. But what a letdown. My home is dustfree, we are all healthy, and we are all so tired of the schedule. I can never complain because we have been so blessed with all of Paxton's improvements, and simply that he is here! I guess we should so expect this, this is just how having a baby in the NICU goes. For a moment it was just so real. SO tangible. And ask anyone that has talked to us, but we really were so much more excited than nervous to have him home. Be here as a complete family together. Get him out of the sterile white walls and gloves. Give him more holding, attention, care, distraction, interaction, and happy family life. I so wanted that for him and for all of us. It will come. It is just another setback. Everything has been completed now so we won't have to pass anything else off. Yes I have had my moments of grieving this weekend, I know it sounds funny, but it was a big deal and for it to seem so certain for 2 weeks... 2 weeks hospital time is a long time to get your hopes up! I shouldn't have been shocked but I was. Again, he is here, and having him healthy is the most we can ask for, so we go with that outcome wherever it means he has to be. Well, NICU, looks like we will be around a little longer. Hopefully just not too much longer! Maybe even still this week! We are ready, whenever it comes.

Thank you all so much for your help. Gosh, we have been so blessed by everyone's service and love. There isn't a day that goes by that we are not served physically and receiving love and support emotionally. We are extremely blessed and so grateful for the Gospel. It has put everything in perspective for us and given us so much hope and faith. My little Pacman is such a fighter and will continue to fight through all that he is given. "Hit Me with Your Best Shot" must be his theme song! I can't apologize for being so proud of him. He is just the sweetest and best.

Here are a few highlights from last week.

First and foremost, Halloween. Dave and I have always dressed up and this year thought our drs. and nurses would get a kick out of us trying to be them, like we do everyday! And our kids were... nothing other than SUPERHEROES, of course! That's what they are to us so it was all super fitting.

Paxton did great rooming in and so did we! (we think)

First therapy on a mat

loves being up to see things

Until next time! Xs and Os.