Houston, we are at T minus... don't jinx it!

Each day the doctors have increased the amount of milk they give Kylie.  She is up to 41 cc’s per feeding today.  Once she runs out of the current bag of IV fluid she should be done, since she is now eating enough to not need it.  It will be nice to see her without having an IV, since she’s had one almost constantly since birth.

 

Assuming we don’t hit any more bumps, we are now looking at a matter of days, not weeks, until she can come home.  There are a few tests they have planned on waiting until just before she goes home, and they are scheduling them now.  They will do another echo of her heart, to check the aortic coarctation and make sure everything is still ok.  They don’t anticipate any changes or problems will be found.  Second, they will do a repeat of the swallow test.  That is the test that showed Kylie’s inability to swallow milk properly.  We’ll find out if she is any better now than she was a month ago.  My superstition prevents me from jinxing the whole thing, so I won’t put down all the details of when she might come home.  Let’s just say we finally have hope.

 

As our shock of being in the NICU has worn off over the past several weeks, we have become more and more aware of other babies in the pod with Kylie.  Some stay for a day or two, others for weeks and weeks.  We know that some have not made it, but of course they don’t ever release info on any baby other than your own.  They refuse to answer any questions so we don’t ask.  It is really sad though, when we notice a baby is really sick, and then they are gone the next day.  There was one baby in particular that was on all kinds of machines over the past few days.  We know enough by now to tell that she was extremely serious.  Today, her crib wasn’t there.  I don’t know how the nurses and doctors do it, working in that environment, but we're grateful they do.

 

When we see Kylie tomorrow, she should be bald.  She’s trying to make a fashion statement.  They have shaved two areas of her head so they could put in IV’s, so her hair is very weird looking, with shaved circles in it.  Since her newborn hair is going to fall out anyway, we asked the nurse to shave it all off and let the real stuff grow in.  Her new nickname:  Chrome Dome Kylie.

 

I realized yesterday that we don’t have any pictures showing what the pod looks like, so here are a few.  There are 3 or 4 beds on each side of the room, depending on how full they are.  You can see all the pumps, machines computers, etc. that are in the room.  This stuff is expensive too.  When they took Kylie to surgery, they had her in a transport crib, equipped with all the machinery: ventilator monitors, etc.  The nurse told us that crib alone costs about $35,000.  I haven’t confirmed that price on eBay though, so it may go for more on the black market.