NICU Night #82 - Trach Day #2 & Upping the Feeds!

Sunday, July 11, 2010

Last night was a fun night.  Chris was on again.  I was sad that she and Melissa were scheduled for the same nights and she got to have him.  Melissa leaves for a month of vacation on Thursday and I was hoping she would get to have Timmy one more time.  (He WILL be home before she returns August 10.)  But, overall, it was an amazing night.

I have been sad that Timmy has been getting so big.  I just found a bag of preemie onesies that I hadn't taken over, debated, and decided to take them anyway.  There are a few "justborn" and a couple "newborn" onesies in there as well.  I picked out my favorite of each and the "justborn" and "newborn" are still quite a bit bigger than Timmy.  He fits the preemies right now, but it probably won't be much longer.  He's a little on the short side, so he has that in my favor.  =)  (Thanks, Dad!)

Timmy was asleep when I walked in at 10:30.  He looked so snug and peaceful, absolutely angelic.  So I let him be while I unpacked the clothes and then asked Chris if she was okay with me taking him out, just didn't want to freak her out by suddenly grabbing him for the first time in over two months.  She is all in favor of holding, so stood up to help me get him ready.  I got to change his diaper first and get him dressed.  Oh, sweetness!  Timmy still has a broviac line in his right thigh so clothes with snaps have been pretty much a must between not being able to slip things over Timmy's head with the ET tube or pull them up from the bottom with the line in.  How nice it was to just pop the trach off for a couple of seconds and slip a cute onesie over his head.

He is officially on CPAP as well.  Still through the ventilator, but every breath he takes is his own.  It was kind of surreal to see the number I have watched day after day for so long suddenly taken off the monitor completely.

Once Timmy was in my arms, his eyes were wide open.  He kept arching a little to look at the ceiling, which Chris and I found rather entertaining, but it was just magical being able to watch and allow him to move his head any which direction.  And then, when his peepers started closing, I could move him to the crook of my elbow all by myself!  (That sounds like a true preschooler statement.  Ah independence!)  Ironically, his eyes never closed for long though.  Once in the crook of my arm, his little head turned in and he started rooting around.  Chris happened to notice too and it was nice to have her vocalize that I'm not just imagining things.  I so wanted to yank the curtains closed around us and let him have at it.  However, I don't want to put him at risk (although I really don't think it's much more of one than just holding him) and I think a 30ml residual at his next feeding might give us away!  (Pretty sure his belly isn't quite ready for the amount he could get right now.)  Patience, patience... 

They say that patience is a virtue.  Though true, I have learned over the past several months that it can be willed into being also.  Living one day at a time is key.  Definitely got me through the bedrest chapter of Timmy's life.  And recognizing that you're going to have to be patient for a long time makes it worth the effort.  Within days of Timmy's birth and the beginning of serious sleep deprivation, I could feel myself getting very snappy with my other three kids.  So not fair to them.  I told myself at that point that I was going to have to MAKE myself be more patient.  It was either that or get more sleep.  And to get more sleep I would have to stop pumping and cut down time with Timmy, neither of which has ever been an option.  I have been amazed since that day at how much patience I can dredge up before I break.  (Which has happened as well, don't get me wrong.  There is a very good reason Trevy has been to church three times in the last month without so much as combing her hair.)

Back to last night - I had a great time with Timmy, talking to him and watching all his sweet little movements and expressions.  I finally had to set him back in bed at 1:30am to go pump.  He was due for another diaper change and boy was it impressive!  90 grams complete with poop!  I'd say this stellar boy has finally figured out how to lose edema!  Chris said that his weight for the night was 2.9kg (6 lbs. 6 oz.).  She was shocked because it was 2.7g (5 lbs. 15 oz.) just a few days ago.  So she looked up his trends and he had shot up to 3.0kg (6 lbs. 9.8oz.) the night of his surgery.  Apparently he knows how to retain the fluid as well!

I did get to see Melissa after my final pumping of the night.  I expressed my frustration that it has taken us so long to get Timmy off the ventilator.  I wish we had just cut to the chase a month ago and gotten Timmy off the ventilator then so we could already at least be working on the feeding hurdle (still praying it's a short one).  She asked if it had even been an option at that point.  I don't know that it was, just seems to me that we should have clued in that Timmy never had a problem with his lungs to start with and that something else was likely the problem in getting him off the ventilator to start with.  Hard to believe it's almost been that long since Dr. Parry saw him the first time.  I know he was eager to get Timmy extubated, just bad timing all around with the anastomosis.  Timing has definitely been our nemesis this year!

But we seem to be trending upward.  Following Timmy's feeding increase at noon to 24mls, the doctors bumped him up to 2mls q. 12 so he went up to 26mls at midnight.  A few weeks ago, this would have terrified me, but it's now a huge relief that we are even a little above halfway to full feeds now.  (The goal is 50mls.)

I tried to take a few pictures last night with the flash so we wouldn't have to turn the light on.  They definitely do not do my cute little handsome justice!  (I got the phone call this morning that they need more milk so I'll have to force myself to go in today during the daylight.  Hooray!  Natural lighting makes for some beautiful photo ops!)

This was my favorite.

I was thinking Sunday would be Timmy's first rain.  Here are the clouds we had departing St. David earlier in the evening.  We got pummeled on the drive back to Tucson.  But, alas, not a drop between our house and the hospital.  I could smell it in the air on my way out that night, but nothing.  Dry as a bone.

When I walked through the door last night, I could hear deep breathing.  Sounded like someone was asleep on the couch (not sure where they would find a spot) and it took me a few seconds to locate the culprit.  Isn't he cute?  Yes, I put him back in his bed.  Halfway on a hard floor can't make for a good night's sleep for anyone.