A New Crib!

Time to update again.

Paxton had a very huge and exciting milestone on his 5 week birthday, Tuesday! He got to move to a big baby crib! That's right. Paxton was able to regulate his own temperature and had gained enough weight (4 lb. 14 oz., one pound total) to move to a crib. We were very excited. :) We love any reason to celebrate and this was certainly one of them.

This means he also gets to wear clothes and be swaddled now, which is so fun and so hard with all of his wires! (Last count was 19 wires/lines attached.) We have to be very careful dressing his arm under the trach, and his clothes can't come up over his left arm because of his PICC line. So cute and exciting though.

This week Paxton has looked so much bigger and so beautiful and peaceful. His painful episodes are not as severe and he is not needing as much sedation. Yahoo! His blood pressures were high so they did a renal ultrasound to check his kidneys. They are borderline of needing treatment so they are closely watching them.

Paxton does have some new developments. For some reason, since he went off the nitric oxide he keep having "bradycardia" episodes, where his heartrate drops significantly. Then follows his breathing, oxygen, etc. I was there when the first one happened, when they took him from my arms to put him in his new crib for the first time. Immediately all of his numbers dropped and he went blue and still, needing "neopuff" manual pumps and patting on the chest to resuscitate him. It was pretty scary but after a few moments it seemed he had recovered fully. They weren't sure if a little water had gone down into his lungs, or if they hit his "vegal" nerve (makes the heart go into funny rythmn). However, since that time he has had many, many of those episodes. They are trying to determine if it is from reflux or the vegal nerve or the pulmonary hypertension (of his blood vessels constricting in his lungs). Because of this they have stopped increasing his feeds and he is back on some IV nutrients to supplement. Figuring out this heart issue became #1.

The pulmonary hypertension has been high so he has been back on and off the nitric oxide several times. In his most recent echo the cardiologist found some new concerns in Paxton's heart. He has arterial stenosis (abnormally narrow arteries) going out of the heart to the rest of the body, causing blood to back-flow in the right ventricle, building pressures and struggling to pump the blood to the lungs and the rest of the body. Paxton's PDA is still an issue as well. They would like to close his PDA, but with smaller arteries, the PDA has actually been helping the blood have another way to exit. So, the doctors need to do a balloon test next Monday. They will go in through a vessel in the leg, inflate a balloon in the PDA (so as to see how the heart would act if it was closed). Then they will measure the pressures in his atriums and ventricles to see if they are too high. (The are already high, so I imagine it won't be better.) Depending on this exam, Paxton could have to have open heart surgery to close the PDA and widen his arteries. Closing the PDA in newborns is very common, but widening of the arteries is not.

His white blood cell count is high again and they have already tested for the normal urine or blood infections. They took a culture today from his trach to see if he could possibly have pneumonia. No word on that yet, but he doesn't really look sick to any of us so high hopes on that. Just not sure why his count is up agian.

Last night Paxton went into the OR to check the pressures in his eyes. Happily, the pressures are not as high as to demand surgery. Yeah. They are going to take him off his systemic medications and see if he can just use topical eye drops to control the pressures. They will check again in a week to see what is happening and what plan of action they will take next.

So Paxton's word of the week is PRESSURE. Pressure in the heart, kidneys, vessels in the lungs, and eyes. We are praying for Paxton's pressures to decrease!

This little guy is such a trooper. We are so happy he did not have to have another surgery tonight and happy that we have been able to hold him more this week. It is a treasure spending close time with him and also not having to bend down to talk to him or touch his hand through little peep holes.

Some other happy moments this week:

The most awake we have seen Paxton yet!...

Thanks for all of your continued love and prayers. We are all trying to keep on keeping on!