Update

On Saturday, Kiran was stable enough that we could hold him as much as we wanted.  I think he was passed around between mommy, daddy, and Nana J (Papa Joe had a touch of a sore throat, and, though it killed him, refused to chance it) from about 11:00 am to 4:30 pm!  We couldn’t get enough!  Saturday was also the day they were able to take his lines out and go down to just basic monitoring with an IV placement in case – we haven’t had to use it yet!

Our big goal has been focusing on eating.  He is still having trouble with the suck, swallow, BREATHE business – he forgets to breathe and needs a reminder.  He has been consistently taking around half of his feeding amount by mouth, though, so we will take it.  The initial placement of the NG tube (feeding tube that gets inserted into his nose and goes down to his stomach) was incredibly traumatizing – the nurse had trouble placing it and ultimately opted for a smaller size.  I was completely overwhelmed (and still am) thinking about having to place it myself at home.  As the days have passed, I am getting a little less worried about it, though I am still hopeful he will get this eating business figured out and we will go home without a feeding tube.

Yesterday, Papa Joe was able to hold him…between him and Nana J fighting for their time, I barely held him all day.  However, I was encouraged to leave the hospital and walk to a nearby place for lunch with Arif, and I did get a daytime nap in…grandparents are godsends!

Kiran is becoming more and more alert, especially around 3 am.  I am still not tired of hearing his cry, though I am tired….

The surgeon, Dr. Turek, came by this morning and confirmed what the cardiology team has been telling us: Kiran gets to gain weight before he needs his first surgery!  We are so thrilled to receive this news – the bigger, the better!  We will be moving down to the regular cardiac floor this afternoon, which is one step closer to taking him home.  Our biggest goal is working on the feeding issues, and we will also finally be receiving some of the newborn training we haven’t yet received.  And, of course, we will have to learn how to use all the monitoring devices we will be sent home with…and how to place the NG tube if he needs it….

Still waiting on genetic testing results – still nervous with what we may find.  But, all in all, this has gone so much better than we anticipated.  Kiran is a fighter and just quite the little guy.  We love him so much and are so thankful we may be able to take him home soon!

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