today is my first day since kyle came home that both boys are off to school and we don't have a doc appt.
so - I have worked on Medicaid - ahhhh! interviewed several pediatric physical therapists, made more doc appointments, read 2 studies given to me by one of our attendings in the NICU and now I am sitting down to update on kyle.
no profound dramatic thoughts today - just an update!
Kyle is 17 1/2 inches long, weights 6 lb 4 oz. He is one week corrected and 4 months by his Bday. He eats 3 1/2 ouces 8 times a day. he eats every 3 hours in the day time and every 3 to 4 at night. most nights he makes is in 4 hour sessions. John does one feed every night! This is amazing!!!! Kyle does seem to have his days and nights mixed up a bit - no more or less than my other two did. it is funny to me though b/c he is not "really" a new born! anyway - he likes to keep us up at night for now!
I think it was all the partying that he did with the night shift in level 3! but I won't point any fingers!!!
He grunts and groans and wiggles and makes all those cute little newborn type noises! He does wake up every now and then during the day to play and watch and be read to. yesterday he laid in my lap and watched jack and I play race track with the train set!
He loves to be in the swing but breathing wise can't seem to handle to much of the bent sitting up position so we also lay down alot.
He still has a clot in his heart - haven't got the official recommendation about that yet. He still takes a shot everynight - I DO NOT DO THIS - it is all john - I am not nearly as tough as i thought! and still does have a hernia and will have that surgery some time in the future. He is developing an umbilical hernia also - they will probably take care of that too?!
He is so cute and so cuddly! Loves to be held! he loves his bath time
Here is a new pic.
i am begging to realize what a miracle he is. In the moment this is hard to see but when I have a chance to step back and realize that I have a 6 pound 4 month old that was healthy enough to come home from the hospital on just one med that leaves us in a couple of weeks (hopefully!!) and gets all of his nourishment from a bottle - amazing! He really is a miracle. The courage of a lion and the spirit of a king and the goodness of our God.
Please keep praying for kyle's brain to be fully restored!
Thank you all for your help on the medicaid stuff. a form was filed wrong by our medicade case worker causing it to not retro activate. so there was no coverage from kyle's bday until 11/1. This is a set of 10 very expensive days. a form has now been filed to try and correct this but even though it was medicaid case worker mistake they can't just go back and correct it. so it is a wait and see for now. I don't see how they can hold us to that or keep us from the benefits. any thoughts are welcome. also any thoughts on getting babies to wake up in the day and sleep at night? hahahaha!
We really are doing great!