Doing great!

Ah, I'm sorry it's taken me so long to post!  

Monday was a Miracle Day. Literally.  

At 2:10 the doctors came in to take Paxton down to the cath lab. Or so we thought. Actually they were coming to tell us that...Paxton was NOT going down to have the catheterization procedure. What?! Dave and I were both so confused, worried, frustrated, and shocked. Why would they possibly be changing it this time? 

They said that from the echo they had done on his heart at noon, looking for how they were going to approach his heart, they saw two new things. 1. Paxton's PDA was not flowing bidirectional anymore, but left to right as it should! (This is huge!) 2. Because of this they were able to tell more the correct pressures and amount of blood flowing from the heart through the arteries and they thought the arteries were smaller than normal, but not "critical", still functioning well enough. They suggested that Paxton should have the normal PDA ligation to close his hole, without worrying if it would be too much for his heart. WHAT! Dave and I were so puzzled how he could go from possibly having his whole cardiovascular network of blood vessels being too small (and thus possibly needing a heart or lung transplant to survive), to being able to have his hole closed with no problem at all. We had to ask millions of questions, "Are you sure? What will happen if we are wrong and it is too much for his arteries? How quick can you get in and fix it before he would have heart failure, etc?" So many concerns. After being reassured that they felt very good about it, they told us over and over that this is a good thing, that the cath lab was VERY, VERY risky for Paxton, and now, thankfully, the benefits don't outweigh the risks. (Lovely how the true risky-ness of it all comes out AFTER you have given consent for it! :) They explained how for Paxton's size, you absolutely don't want to do a cath lab "just in case". They normally don't do them until double the size Paxton is now, about 9 lbs. This is because the size of the catheter they would have inserted into Paxton's ephemeral artery (from his groin) was the same size as his ephemeral artery! Meaning they could have "lost his pulse". 

Long story short, we quickly learned to count our blessings. Not only that, but to count it as what it is, really a miracle. Paxton has had biweekly (at least) echos for 7 weeks, and this was the first one to show anything so different and improved. Paxton had had an amazing blessing (by Pa) the Sunday before he was first scheduled for cath lab, but the next day they said he was too sick from the pneumonia to operate. Little did we know that week's time was going to be more than for Paxton's infection to clear, but for his heart to take on some new functioning as well. With the powerful words of the blessing in mind, I can't tell you how comforting and amazing it is that God's will was to allow for Paxton's heart to be healed, or helped. :) That is all we could hope for. Of course things may happen down the road - it's possible he could still need a cath lab one day, or a number of other surgeries, but it is a miracle and a huge blessing even that things improved enough right now for him not to have that procedure RIGHT NOW. 

I hesitate to even say when anything will happen, we are beginning to feel like the boy who cried wolf! But we just ride what they say like you do and should really learn to expect all of the unexpected changes. So far Paxton is scheduled for another eye exam in the OR (which only leads to surgery if his pressures are high enough to be of great concern to his optic nerve) tonight, and possible PDA ligation (closing) either tonight, tomorrow, or Monday. We have not heard yet. We are actually excited that it is so soon as this should help Paxton's lungs extremely, to not have the extra blood flow from the heart. We are all hopeful that in a few weeks after the PDA closing that Paxton could wean off the vent and be that much closer to coming home! Yippee. We can certainly hope for the best. Again. And again and again.

It's crazy how things change so fast, and so drastically. I go from totally being able to picture having Paxton here at home and adjusting to trach cares, all of the attachments to his body floating around our house, etc., to not knowing how long he will be here at all.  Certainly a huge weight is lifted off my shoulders... the constant worrying of the whole possibility of him needing a heart AND lung transplant TO SURVIVE was a little much, especially as 'chromosomal children' are not very high on those lists, unfortunately. :(  So I can smile now and feel so much joy. Monday was the first day I can say I ever left the hospital feeling happy! SO MUCH to celebrate and be thankful for. This was not just an 'incremental improvement' as Dave and I are sure to give thanks for everyday, but a monumental one!

I want you all to know that I take these things very sensitively, even if I am sharing them on my blog. I know that many things are for "our profit and learning", and not to be "boasted" of in public. But I also know that Paxton is here with these special challenges AND his special spirit "that the works of God may be made manifest." ...They certainly are to us and it actually feels selfish to keep these things to ourselves. Especially when we know how invested so many of you are in praying for Paxton daily and being so concerned with his progress or problems. We felt it was something we SHOULD share and hope it's brings joy and added faith to you, too. It's not a small thing to think of all the things that work together to make something like this happen: the faith and prayers of everyone combined, God's will being the desired outcome, and ultimately Paxton's faith to be healed. It makes me so happy knowing he wants to be here and believes all things can be done for him to be, and that those things are God's will....What could be better?!

I hope you all have as happy a day as we are celebrating this wonderful news! Paxton has had a blissful three days, infection and anesthesia free :), happy as can be at our visits, with great awake and peaceful sleep times. It's been the best week yet and we thank you all for your many multiplied prayers this week. We can certainly feel them, us and Paxton, too!  We will let you know how the rest goes. Thank you so much! Love to all.

sneaky smile caught in his sleep, so happy!

Grami and Pa getting to hold Lil' P for the first time.

precious awake time

look at those tiny fingers grabbing toys! And Daddy's hands in there, priceless.

Boy's Sunday visit, wanting to cheer little brother on.

Camden tickling Paxton

Mackay giving Paxton ..what else? A treasured binky, of course!

Mommdy playing dress-up again with dreamy boy after bath.

my favorite place for Paxton, in my arms!

Sleep tight, sweet angel, in your cute new hat! :)

XOoOXxxXooOoxoOXxOXooo!