The Count?

I can't believe it, but I think we are really on the countdown for our little man to come home! It is crazy and true! Paxton has improved so much being on antibiotics and having a larger trach that now we are just working on getting his feeds back up and tolerated well with his new G-tube. Of course we don't know how long exactly it will take but we are anticipating and preparing to bring him home within the next two weeks! Ah, Hallelujiah!! As one nurse put it, "I am so happy! We didn't even think he was going to make it, and now just look at him!" It is true. We are all amazed. Grateful. Excited. Thrilled! 

This last week we have been doing our trach training, g-tube training, CPR, etc. etc. Not to mention all the things we have to get, do, and figure out before he comes home. I have been on phonecalls with insurance, home health companies, other families with trached children, etc., and filling out all sorts of applications and forms. There is so much to learn and do for this to all finally fall into place. But each night I just remind myself not to over-complicate things. We are learning how to take care of him and that is all that really matters. God sends these little spirits to us because he knows we can do it with His help. And so we will!

We have had such an amazing outpouring of love and kindness and prayers since Paxton's story was broadcast. Many strangers have reached out and said how much it touched them, or how they could relate to some part of the story, and helped us to not feel alone as they have struggled with something rare as well.  Some have shared that their child is 24, and doing well; others have shared that they lost their dear one after a great battle for life. All of them have said that they wouldn't trade a minute of it. Of course they wished they could take all of the pain away, but they truly treasured every day with their angel. Oh, we feel the same way! It is hard to understand how you could want and love to care so much for someone with so many challenges. All of that is true until you have one of your very own, a sweet and precious angel that has so much love wrapped up in such a tender body. I cannot even express how grateful I am for all that Paxton has taught me already. About love. About myself. About life. We feel so bonded to him, and his smiles, movements, and progress bring us such joy!

Paxton has definitely improved this week, and even more specifically, he had his lowest eye pressures ever in his last eye exam on Thursday! One is even in normal range! Immediately I thought of the power of prayer and know that those many added prayers this week really blessed Paxton's eyes. It's so awesome to see such a great effect! 

By the way, I just have to say...I hoped that Paxton's story would help someone else, bless someone else, that that was why we were supposed to do it. I still hope that is true, but I can honestly say I did not even consider how much it would bless us! I did not know what would be shared, and had no idea they would treat it so tenderly with even a "Praying for Paxton" message as part of it! I am completely floored at how much WE have been the recipients of blessings from that great happening. SOOO many prayers for Paxton, friendships made, and hearts lifted. Thank you to all of you who have been praying for Paxton and sending us your well-wishes and love. It has truly helped our little angel advance! There is no doubt in my mind that his betterments are by chance, or even simply by medicine. I know they are by faith and prayers and God's will being wrought in Paxton's life here. He has truly overcome so much and exceeded by such large amounts what any doctor had ever thought would be possible for Paxton. I am so grateful for their expertise, too, and know that with the prayers and great caregivers combined, many miracles have happened to help Paxton heal and move forward. Like I said, Hallelujia! :)

Speaking of prayers, I haven't done this yet, but my heart aches tonight for a friend from college who has also had their newborn in the NICU with us since a week after Paxton arrived. I learned today that their sweet daughter is not doing well, and right now the doctors don't know what else they can do for her heart. This week is a big week for them as doctors will meet together on Friday again to discuss any further plan of action. If you have any more room in your heart and you can remember, please pray for baby Jane. I really hope she can be buoyed up by our faith and prayers and see significant changes this week! If it is God's will, I know it can happen. And I pray for them for whatever that is, that they will all be lifted up! We have been so blessed by your prayers, I feel like it is the least I can do to try to spread the love and prayers for them as well.

So thank you all for hanging in there with us. It is so exciting we are to this point. Paxton is really reacting to us and smiling all the time. A sweet nurse even caught a video on her phone of him LAUGHING! It is so amazing, all that he is doing. So many sweet nurses come tell us how cute he is and one even cried to me on Friday night about the sweet experience she had with him and just the huge amount of love she felt from him! It really touched my heart and I am so glad others are experiencing what we feel as well. 

He is ready to come home. This little almost 4 month old, 7 lb. boy just wants to sit up and look at things all day. He is sick of laying in his bed and staring at the white ceiling. I think he is going to love being home and staring at his brothers going crazy all day. :) OK, he will need baby steps at getting used to it all but it will be a great thing! It is time to move on to the next phase of life! Time to create our new normal!

Love to you all. Thank you for your prayers and physical service and emotional support. We love you to pieces! A few highlights from the week:

waving to his fans, "Thanks Dudes, I'm getting better!"

i love this, the grandmas team, learning how to suction

proud of our all-star

back in a big boy crib, yahoo!

the boys were so excited to visit Pax. I wish I had a video for when i told them he was coming home soon after Halloween! Oh my goodness, the cutest and biggest giant grins ever!

holding hands

prayers for paxton

super big smiles from a super big brother

loving his first book with Daddy

Amazing first laugh! (You can't hear him but his face says it all.) I hope the sound works.

Ah, great blessings! XOXOXOXO