Answered Prayers

Thank you all so much for your prayers. Paxton had his surgery to close his PDA on Friday and has been doing increasingly well ever since. 

saying bye to Paxton before surgery

The doctors made the first incision and realized it was too low, so they had to make another incision higher up.  Unfortunately, they broke the 4th rib on their way in after collapsing his lung. Paxton "didn't like that" and they had to go up to 100% on his oxygen. The rest of the surgery went well, putting a tiny titanium clamp on his PDA to stop the blood-flow. Paxton was stitched up with a chest tube left in tact to drain the excess fluid, air, and blood completely before sealing things up.  He was sent back up to the NICU and we had to wait a bit to see him while they got everything back in place in his bedspace.

the clamp they used on his PDA...tiny.

first glance post-op, with his new bandages and chest tube on his left.

He really looked just fine, but it's always scary to see him after the OR as he has been given a paralytic to remain motionless and the vent is doing 100% of the breathing for him.  I got a little more nervous as the night went on, expecting things to turn downhill as he would wake up and realize he was in pain, but even then he seemed to remain okay. He would jolt and cry and then calm right down to my voice and touch, something that made me feel so good as his mother, so happy to be right there with him and so wanting to take any and ALL of the pain away!

It took them quite a few blood pokes to get his CO2 to the right place. The biggest concern was his very high blood pressure. After waiting a while to see if it would come down on its own, they gave him a med to control it, which it did steadily. Then they wanted to give him an art line so they could continually measure the pressure of the blood coming out of the heart, but after an hour and a half of poking him and trying to get the IV into an artery, they decided it wasn't going to work. It made us very sad watching him in this process, screaming when they put it in, then turning his face to my hand (which he was squeezing) and trying to endure the pain in the most dignified way he could while they tried to thread it in the right place. I am blown away in these moments by his majesty and ability to brace himself and endure these moments that are so not pleasant to his little body. He is one big amazing spirit in this little fighting body.

Paxton was not able to get really any good sleep. He would drift off until a jolt or deep breath would hurt his lung or body and then he would cry for a moment before being calmed back down. On and off all day. When one of our primary nurses came back on Saturday night she agreed with my feelings and gave him some more medicine to help him sleep. Yeah! He needed it. Since then Paxton has just done better and better. His vent settings have been able to come down, with everything almost to where it was before surgery. We haven't noticed any notable improvements FROM the surgery but hopefully that will come in the days and weeks ahead. Right now his kidneys are trying to deal with the extra blood flow they are now trying to filter to the rest of his body. They will do another echo on his heart soon and see if any further changes need to be made. 

So thank you, thank you for your prayers and help this weekend. It was big and I was exhausted. It takes so much out of you to see them in these situations. I began to get a little glimpse of what it must have been like for the Father, and how at several of the most painful and critical moments of Jesus' life, He had to withdraw His Spirit. I always sort of thought that was because the Father thought it was something the Savior had to do himself, but through these experiences I am beginning to wonder if it was more because it was all the Father could do to not stop the suffering of His son, Himself. It was too much for even Him to bear, and He couldn't ruin the plan by stopping it. I can't even imagine. I just know there are moments I have been at such a contradiction of wanting to be there to help my son bear this burden and pain he is going through, if there is anything I can do I don't want to be even an arms' length away; and yet it is so painful to watch, I either want to push everyone away and stop everything they are doing to my son, or go collapse in the chair because I just can't watch it any longer. It's too painful. I know it probably sounds so melodramatic to each of you, but to me it is so real and so difficult in there with him. I want to be with him every second, and yet it becomes almost too much for me myself. I hate my human nature for that reason and wish I never had to sleep, that I didn't live 50 minutes from his bed, that I didn't have to get home to schedules or any other commitments or timelines. I TRULY wish with all my heart that I could be by his side 100% of the time. And yet I know I am a mom to two other boys, too, and it would be good if they could have some good time with their one and only mom as well, with energy to hold them and play with them and love them without being so drained or tired that I can't put up with the noise or whining. Oh, to be a mom! And that's why I say thanks to you all for your prayers and help this weekend. I was at my max. And because of others' love and willingness to shoulder the burden and be so flexible and willing, I was able to crash last night in a desperate way! Thank you, thank you for all of your support. We are being truly blessed and helped so much in this time. I know things will get better and happy days are ahead again. So thank you from all of us to all of you. Thank you for helping our little Paxton to heal and us to be with our Paxton.  We love you all!

our Paxton last night, improving with every day.