Saturday, May 19, 2012

Waiting on a date

Since we found out about Jensen's next cath, everything is at a standstill until we are actually on the schedule. Until I have a procedure date, I can't get insurance going, lodging, or plane tickets. Every time my phone rings I get so excited, hoping it is CHOP calling! 

Other than running around like crazy people, we've been very busy with little man. As he gets older, his lungs mature more and the pressure in his lungs will drop. His sats will also begin to trend down and all these are signs that he is almost ready for the second surgery. His sats are still great (he was even around 80 yesterday!) but I think he's telling us he's closer to needing his second surgery. He is sleeping less during the day which makes for a very cranky baby. He seems to be fussy when there's nothing wrong. He just isn't quite himself these days, not that this is medically proven, but I just "feel" like he's almost ready. While I hate for him to be a cranky pants, all this makes me happy because..... He's almost done with interstage! His lungs are doing what they are supposed to! 

A few weeks back, Jensen was given the green light for bottle feeds. We still use the NG tube for his feedings, but every few days we increase how much he eats by mouth and decrease what he get through the tube. He is doing absolutely fantastic with this! I've said it before and it still applies...my kid eats like a champ =) He is now taking 1.5 oz by mouth! We still have to give him thickened milk until we have another swallow study and confirm he is no longer aspirating. However, there is an end to the NG tube in sight! I'm hoping that by the time we go back up to CHOP, Jensen is almost completely off the tube and won't have to go back on after his surgery. Fingers are officially crossed for that!

Oh and guess who is over 14 pounds, in 6-9 month clothes and size 3 diapers!?!
 Someone is a chunky butt!

Mommy's man!

Frankie and Daphne are helping him do tummy time

Franklin oversees the fun 

He loves his daddy =)

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