July 14, Day 2

Day 2 was pretty rough for little Paxton. He woke up to a series of tests checking his brain's ventricles, his kidneys, and an echocardiogram on his heart (all the main issues he had in the womb). All of these tests were really stressful for Pax. His breathing just kept stopping. Each time this happened his stats (heart-rate, respiratory rate, and oxygen level) would decelerate and a nurse would have to come give him oxygen, pat on his back to stimulate him, etc. to get his breathing and heart rates back up. This was super stressful for Mom and Dad who stoodby as well. You wish there was something you could do in these moments but all you can do is pray while someone else's hands work to do their trained magic. Thankfully, Paxton always recovered.

At about 3 pm we learned that Paxton was going to be transferred to Primary Children's Medical Center that night at 7 pm. We didn't leave his side and Mom especially wanted every moment with him since he would soon be leaving I would be stuck at IMC to heal a few more days while Daddy would go be by his constant side. We were with him singing songs and holding his little hands and body together until the Life Flight team came at about 7:30. It took about an hour to get him ready to go as he kept having "desats" while they were trying to move and prepare him. This was pretty heart-renching for Mom and Dad, brother Camden, and Grami and Pa. We were all very worried about him making this transport. For example, while his oxygen saturation is regularly supposed to be at 90-95, twice that night it dropped to as low as 6, and 18 in the ambulance. Other than that initial and very significant scare in the ambulance, the rest of the ride went smoothly. With a special blessing for safe transport, Daddy praying constantly on the ride, and

medical experts, Jeff and Audrey, stimulating him, Paxton was blessed to arrive safely at PCMC.

It was pretty awful having them leave. Dad and Pa got to go with Paxton in the ambulance while Mackay and Camden were crying and confused: Mackay screaming for his Daddy, and Camden asking me, "Mom, am I going to see you again?" It broke my heart. (And I was only going back upstairs!) These little brothers were pretty worried, and so were mom and dad. As I went back up to my room and suddenly everyone was gone, including my husband and baby and kids, the break down came. So far I had just been so happy Paxton was here and counting every blessing, and adrenaline and family visiting had carried us through. This moment was the deepest loneliness and longing to be with my family. Thanks to my mom who stayed with me until I felt better, and to Dave who sent me videos of the entire process once they arrived at the hospital.

As soon as Paxton arrived, there was a team of 10 medical professionals to admit and stabilize Paxton. As Dave was reporting to me all that the doctors were considering for Paxton, and what kind of breathing treatments they should do, I remembered something our geneticist had told us earlier on. He had said some chromosomal babies don't survive very long because the very makeup of their brain is different from ours, and for this reason some brains just don't tell the body to breathe, or how to breathe. I asked Dave if they thought that's what was going on... Dave asked the doctors and as soon as they heard this they decided to intubate Paxton immediately. Because of Paxton's makeup of his throat (a lot of tissue and vocal chords very anterior - towards the front), it took 2.5 hours and multiple ENT specialists to finally, on the 10th attempt, be able to get the tube down Paxton's throat!!! It was a horrible, traumatic few hours for Paxton and Dave, the scariest hours of Dave's life. The doctors had to crank back Paxton's neck, trying time after time to send this tube down Paxton's throat while his body was writhing in pain and desat after desat occurred, wit multiple efforts to recover Paxton from his blue body. Finally at 1:40 am, in answer to 100s of prayers, with the help of a microfiber scope and other tools the doctors had not used in this process before, Paxton's tube had been correctly placed and he had a ventilator that would send oxygen into his lungs if he forgot to breathe. As painful as it was, it would become a great blessing to all of us.

(Paxton's warmer bed at PCMC NICU.)

I'll post the intubation video next, and videos of Camden and Mackay meeting Paxton, and Mommy's first night at PCMC NICU.

Then we will just skip to the current state of Pax so we can update regularly ASAP!

Thank you all so much for asking about Paxton so often and keeping him in your prayers. We can feel them and see them working on him and don't know where we would be without them. We know all things are in the Lord's hands and we just continue to pray for His will to be done and the best possible outcomes for Paxton. And in the meantime we are enjoying every minute with him. So thank you all for your love and support, we couldn't do it without you.

Love,

Shannon, Dave, Camden, Mackay, and Paxton