First surgery today!

Yesterday Paxton had a great day, physically stable, with 2 hours awake with mom in the morning, and two hours awake with dad at night. We also had a happy day yesterday in terms of his MRI report.
(Monday morning Paxton went down for an MRI, for which he was very sedated and even though they had his body held down tight for an hour, he did extremely well.) We were actually pretty surprised that it came back so normal. The ultrasounds had showed Paxton having a small "cerebellum", or back part of the brain, that controls motor development. So we expected this to be very delayed for him. However, he kicked a ton in the womb and continues to be able to move his arms and legs with what looks like very normal effort. This has made us so happy as each of the other 12 cases close to Paxton's situations all were "severe"- in terms of mental, physical, and language development. We are so happy that so far Paxton is able to use his body the way he would like. :) He tends to often stretch in a way that is called "posturing", and it is different than 'normal', but we don't know what that really means.

...Back to the MRI, other great news is that the brain stem looked normal. If it looked different it would have been more likely that Paxton would have central apnea ongoing (where his brain continues to stop breathing). However, since it looks normal we have better hope that the central apnea Paxton was having was hopefully due to his prematurity. It has been 6 days since Paxton had an apnic event, something we are thrilled about!

Paxton will continue to have a busy and monumental week. Tonight at 5:30 he is scheduled to go down to the OR for his eye surgery for glaucoma. Hopefully this will allow his body to drain the pressure on his own and not have to be on the diuretic his whole life. We are of course nervous and sad for Paxton to have to have a surgery on his eyes but hopefully it will allow him to have his sight without continual worries of what the building pressure could do. The doctors say that actually the younger people are that  have this surgery to open the ducts, the more successful it is. It is very uncommon in babies and probably due to his deletion.

Tomorrow Paxton will rest but early Friday morning Paxton will go to the OR with his doctors and the ENT specialists to have his trial extubation. We are very nervous for this but also very excited... If there is a chance he does not need to have the breathing tube down his throat anymore we would love to get it out. It's a big step. The doctors have started giving him steroids to bring down the inflammation in his throat so he has a better chance of breathing well on his own when it's out. If he has a bunch of apnic events right after they extubate, they will know he also has obstructive (or physical) apnea, due to the structure of his tongue and throat. We are sooo hoping he will do okay and we can move forward with his breathing possibilities, as well as being able to hold him more often because he doesn't have that tube there to be so cautious of. As you remember it was very hard to get it down the first time, and there is the possibility they will have to put it right back down, which would not be fun for Paxton but hopefully would go smoother this time around. Hopefully that won't have to happen!

On a lighter, happier note, yesterday was Paxton's 2 week birthday! We celebrated by taking pictures of him in the sweetest little hand-made booties by my Dad's secretary, Barbara. She is such a sweet woman and even made him two pairs! One for now and one for later. We were so touched and loved and getting to put them on Paxton's feet to take a picture of him.

You are such a dignified fighter, Paxton. I've seen how you brace yourself and do your silent cry when you are in pain. I am so proud of you and the strength you came here with. You are giving mom and dad strength everyday. We love you so much and know you have prayers constantly being sent to Heaven for your care and success. So many people love you already. Thank you for blessing us with your tender spirit. We love you, little Champ!