curious luke

update pics

i know he looks like a normal little fat kid in the one next to this... he's getting there. he's 4#12oz. and 18". bigger than his brother when he was born. and as sweet as possible. you may notice the lump on the right side of his little head. baby luke had a grade 3 brain bleed at birth and because of the blockage of csf, he developed hydrocephalus. sounds pretty bad, but as far as it goes, baby has done remarkably well. a reservoir, that had been tapped daily with a small needle to aspirate excess csf, was placed until the little boy is big enough to undergo shunt placement. but, alas, that day is upon us. he is, so far, scheduled for surgery on monday. if you remember us in your prayers, please pray that over the remainder of this week, that God will be in the plans and if it's absolutely necessary, that He will hold my boy in his palm thruout the surgery and recovery. a shunt is a lifetime device. once placed, it will never be removed. if it's necessary for luke to thrive, then i'm ready for it. this has been the thing that is hard to share because it makes my child different. everyone can see the little egg on his head and see that he has something going on. when the reservoir was first placed, it broke my heart because up until then, you couldn't see anything different. luke was just another special preemie with the usual complications of his condition, but when they shaved his little head and placed this obnoxious device, now everyone could see. i don't want him to be vulnerable. it's taken a lot to share this, but it's part of coping. he's an amazing child and regardless of his bad hair day haircut, he's beautiful. now i kiss the little part of his head that bulges, covered with soft peach fuzz growing back and know it's just another part of a special boy that i love unconditionally.

skip ahead, seeing his face

the date is june 4. we're really really sick of cpap...i can't even hold baby to my chest...it's just far too cumbersome. new set of residents to chase down. one of our favorite primary nurses is caring for luke. she chases one down and suggests a switch to nasal cannula. after conferring with the attending, he comes back to write orders...awesome! baby is gonna try nasal cannula. that's still some assistance, but a much easier one to work with.

and the biggest advantage...i can now see that beautiful face, unobstructed.

sans mommy

a little daddy-boy time without mommy. i have to pump, so sometimes, luke and gregg get to talk without my presence. i'm glad i got vid, tho. :)

exploring his world

i came in one day and baby's doors were open. peering out of them, there was the most beautiful pair of eyes, exploring all he could...i'm aware babies can't see well at all, but if i didn't know better, i'd say he could see everything.

cpaps and funny hats

baby learns to hate the cpap as much as we do. in one shot, he was gripping each side with his little hands. as if to warn us that he'd remove that, too, if it bothered him too much more. there's a lovely picture my sister got with her cellphone...he looks like a big boy sitting up...it's just because it was taken above his isolette. but he looks bright eyed and ready to go home. ...yeah, i wish!

to the victor go the spoils

lets not forget daddy, no way! gregg also stuffs the little lovebug down his shirt. he spoils him the same. that tiny warm body breathing against you is a small taste of heaven. and when he puts that little hand on your chest. the tiniest touch and the deepest sensation. he pulls heartstrings with no effort.

more awake in week three

we got some chances to get a break from that miserable cpap...and to see his beautiful little face. and even once got a shot of the hair, somewhat little old man look. :) he was opening his eyes and having wakeful moments much more often. they lasted an ever so short amount of time...and never when he was sharing my body heat. he was getting my breastmilk, but only thru his og tube. that means mommy's freezer was filling up with tiny 2.5 oz bottles. (now we have an extra freezer in the garage...and thats filling up, too.) he continues to grown and is almost a pound more than his birthweight. but he gains and loses daily...

your mom must be a nurse...

on week three, baby decided he was finished with the vent. he extubated himself. which isn't at all uncommon for these little roughnecks. but usually it ends with a rush to a blue baby's bed with a second tube..bells and whistles screaming. but they said they just watched him...and he did fine. at least long enough for them to decide he could move onto cpap...that's the wretched albeit life sustaining device you see on his face in the first pictures. it pushed air into his immature lungs to maintain pressure needed for effective gas exchange in baby's blood. otherwise, he can't maintain his oxygen level. it didn't interfere with kangaroo care we started. little luke started to spoil us. we started holding him as soon as we were able...me skin to skin most of the time. most helpful for baby and mommy.

week two came around with more excitement. as is typical, baby's liver wasn't quite doing it's job and luke had a lovely glow of jaundice. under the lights we go. at his bedside daily, i was hands on as soon as they told me what i could do. and aj decorated lukes's little room with art he drew himself. we added our big brother's lovely 4 y/o pics as well. as you can see, his little bruised foot was only fingers long. beautiful tootsies. and another picture shows his hair...aj wanted to call him shaggy. he didn't know how appropriate it was. aj still hadn't actually seen luke. we took vids and pics daily to show big brother and explained that luke was just too small and sick to bring home.

smallest angels

way back, in the first few days of life, luke survived with the help of a ventilator. he had and still has many wires attached to him. they tell his caregivers his heartrate, his oxygen level and his respiratory rate. and those are all attached to an orchestra of dings and dongs we're slowly learning to rate. i've figured out what most of them are and what i can do to either fix it with baby or quiet it so as not to disturb the little guy. it looks a little scary, and it is, but i started to share our story to honor the hope i have that luke will pull thru and be the little boy we imagined...running and playing with his brother, without any deficits from his early birth....