4603

Love this picture!

Laying in his big boy bed! No Z-flo and on his pillow! 

Wearing Daddy's hat!

4603. That is how many grams Caelin weighed in at this afternoon. This is 10.1478 pounds! Apparently Caelin heard Dr. Chai tell Mom and Dad that Cael just has to get to 5 kilograms (5000 grams = 11.0231 pounds) for the Glenn to happen because since that Friday morning he has gained nearly 500 grams- which is almost unheard of! The doctors are a little concerned with his rapid weight gain, especially because Caelin is only on 13mL/hr of formula and his goal is 23m:/hr. But we are hoping it is just his body reacting to not having been fed for a little while but growing longer, thus needing to fill out. Sean and I think part of the weight is from his swollen leg. He had an ultrasound done on his femoral veins which showed no changes from his last one (he still has 2 veins occluded in his left leg). So it is possible that the occlusion is kind of catching up with him and combined with him frogging his legs constantly and the diaper being tight when he lays on his left side, it could cause it to swell.

His Lovenox dose was increased from 6.5 to 7.0 because his heparin level is still not therapeutic which means he is not properly anti-coagulated to prevent clots in inappropriate areas. They will continue to wean his Methadone and Valium this week as Cael’s body allows. They had to maximize his Enalipril dose because of his high blood pressures. Last week through Saturday, his pressures were consistently in the 80s and 90s systolic and the past 36 hours they have been high 90s to 120s systolic. Because of these pressures, they are unable to wean off the Milrinone. This makes us sad but if he needs it, then he needs it. They are talking about possibly trying Clonidine again, but at an appropriate dose of 2 mcg not 2 mg. So we’ll see…

Since Caelin is not going home before his Glenn, we decided to bring more of his toys to the hospital. So today he swung in his swing, compliments of the Cherf family, for the first time! He had once swung in a swing from the hospital but it was not a good quality swing, so we never used it again. But this swing he absolutely loves! He was crying before going in there and as soon as his whole body laid in the swing, he stopped fussing! After a few minutes of looking around and analyzing the situation, he succumbed to exhaustion and fell asleep. We also brought in his Bumbo and he sat in it for the first time! He has been pretty fussy today and with his leg swollen, we didn’t want to push him with the Bumbo if he didn’t like it. But to our surprise, as soon as we got him situated he loved it and looked like a Bumbo veteran! We are so proud of our little miracle warrior- he never ceases to amaze us.

In his swing!

First picture in Bumbo for the first time!!!! "I got this, no problem!"

Whatchu talkin' bout?

He is such a big boy!!! 

So his mood has been kind of coming and going based on slight withdrawal, constipation and gas pains, his swollen leg, and the normal ups and downs of being a baby. Yesterday, Daddy was changing Caelin’s diaper and Cael was screaming! As soon as Daddy lifed Cael’s legs to clean his bottom, the problem resolved. Poop came flying out like a rocket, all over the diaper, blanket, and Daddy’s hand. Mommy laughed so hard it nearly sounded like a scream! Oh the wonder of diaper changes!

Rocket launcher!

Thank you all for your continued prayers! He has made remarkable progress but still has some big hurdles to jump and obstacles to overcome. I have faith that his strength and your prayers will help to keep him the powerful, victorious warrior that he is!