Breakin’ the Rules!

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Almost 12 weeks in the making, the first photos of the cousins together!

Faith has known about Max for a long time… she draws him pictures, his photo is in her “Who Loves Baby?” book, she talks about him a lot, but until last night, she had never met him.
Thanks to a fabulous accomplice who was willing to bend the rules for us, Faith was able to come into the NICU last night to meet Max for the very first time!
She was a little intimidated (who wouldn't be, with all those tubes and wires and weird sounds?) but she sat with him on my lap and started warming up a bit after a little time.

And since I'm on a roll with the good news updates, how about these? Max's feedings are still going great; he's been chugging along like a champ, and he now takes almost ALL of his feeds from the bottle. The doctor told me yesterday that they want to try upping his calories this week. The formula he is/has been on is 20 calories per oz, and they're going to try bumping it up to 22. If he's on a higher calorie mix, it becomes less important that he finish every drop of every feed, since he's getting more from less (make sense?) When it's less important that he finish every drop, gavage feedings are unnecessary, so… THE FEEDING TUBE CAN COME OUT! Every wire or tube that Max gets rid of is cause for celebration, and this one is no exception!

He had an eye exam yesterday, and I'm thrilled to report that his eyes are improving! Being on elevated levels of oxygen actually contributes to the ROP, and is a big part of why his being on room air (21% oxygen) is so great… it gives his eyes a chance to heal! He's still technically “Stage 2 ROP” but better overall, so we should be downgraded (upgraded?) to Stage 1 soon! Stage 1 can be outgrown, so the only thing messing with Max's vision will be genetics. (Sorry, kid)

Sort of a bitterwseet moment for us yesterday… as I was getting ready to leave after Max's 2:30 feeding, Kelly said something that immediately brought tears to my eyes. (I don't think I've talked about Kelly nearly enough on this blog… she's Max's primary nurse and has taken care of him on day shift since he was born; she's been his angel and my savior. She was the first one to ask if I wanted to hold him, who taught me how to take his temperature, she's amazing and we'll miss her tons. I offered to have her move in with us, since Max likes her so much, but she has a husband and kids and stuff, so she said no. *sigh* It was worth a shot! ;-))
So anyway, as I was getting ready to leave, Kelly said to me “Well, if you guys are gone before I come back…” (I think she said something after that, but I wasn't listening.) Kelly's on vacation until July 18th… if he's GONE before she comes BACK? This was the first time a medical person had specifically said anything even close to this almost being over. The first time that someone in scrubs had acknowledged that his homecoming day is looming ever closer. *gasp* Jamie and I will be in charge FULL TIME!

There are so many moments like that one, these days, I almost can't keep track of them all. A random nurse mentioning how good Max looks, like he's ready to go home… another one mentioning that she's happy to see him turning this final corner to get out… it's like the general consensus is that Max is now a short-timer who will be home soon!

He has his nuclear medicine testing today, actually, as I type this! They're going to feed him some sort of nuclear contrast material and then do a series of scans to see if the aspiration reflux theory is a good one. If things go the way they have been, nothing will look abnormal and they'll be stumped as to why he's coughing, and then the cough will go away and he'll be fine. It seems like the more dire the potential diagnosis, the faster Max overcomes it, so we'll see! I have to skip feeding him during work today, since with the testing his schedule is all thrown off, but I'll be there at 5:30 to give him dinner, so I'm hoping for an update then. I'll post as soon as I hear anything!

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  1. Faith just doesn’t look too thrilled!

    I am so excited that you can finally begin to see an end in sight! Max is really growing.

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