getting old

sorry for the delay in posting. we've been overwhelmingly busy. thank you for your patience. conley has been busy too: growing, being cute, and the like. i got to hold him again today on my chest, skin to skin. a great experience until i felt like he was slipping off me, my arm started to fall asleep and i began to feel something i don't normally feel: nervousness. i'm not a nervous person by nature (i have plenty of other issues, though, trust me). i'm a person who is over-confident and feels he can handle everything. that feeling that something i hold so dear might be in jeopardy or that i'm actually not capable of rectifying a potential problem is horrid. i don't like it. ready for him to come home. so many lessons i'd rather not learn, however, Someone must know me better than i do myself. conley is about 3lbs. 11oz. still working on maturing those lungs. his eye exam wednesday showed he had some mild retina damage which he could just grow out of or might require a laser surgery. please pray for the former. one day at a time.
-love-
p.s. pictured above is pat, conley's primary nurse, and a resident saint of the NICU.

favorites

there are so many great nurses at the NICU. like any other situation though, you form special relationships with certain people. conley has formed relationships with a few, including Pat, his primary nurse and one of his most favorites day nurses. she knows conley like the back of her hand and she gave me the scoop this morning. he's doing great. the weight he's gaining is real weight, not water weight. his lungs are clear and they're weaning him on his oxygen. the pressure is at the lowest setting and they're weaning the oxygen content. they increased him to 30cc every three hours. that's a full ounce every three hours. he has his dad's appetite. please keep praying he continues onward at such a good pace and that we're able to work our schedule in such a way that we can hold him enough and give him the human contact he needs. thanks so much. we're getting there one day at a time.
-love-

baby brother

so lots of developments to update y'all on. conley is doing really well. he's now on a regular nasal cannula and bouncing between the lowest to the second to lowest setting on pressure. after he weans down on that, he'll wean on probably one more setting and i think that will be it for help breathing. he's weighing in at 3lbs. 7oz. and looking great. he was held by his auntie dorie this week, among a few others.

RSV (Respiratory something Virus) season is over and so siblings who are in good health are allowed into the NICU (i'm just thankful that parents not necessarily in good mental health have been allowed in for some time now... ahem). the first thing malachi said was "conley, baby brother."

also, thanks for all your prayers, conley's neighbor (whose name is joey) is doing better. his mom and dad were super happy to hear so many people are praying for him. he's off the hi-frequency ventilator and moving in the right direction. please keep him in your prayers. well, we can't be more grateful for how far we made it as of now. our family has come together, finally, even for a moment. one day at a time.

-love-

grandpa's day

grandpa and i both got to hold conley today. he's looking good. they've held off on the diuretics still and he doesn't seem to be working any harder to breathe, in fact they began to wean him on the pressure of his high-flow nasal oxygen, so he's got that going for him...
it's so nice to hold his still small (but much larger than before) body in my arms. you can feel him breathing and he'll just sit there and kind of open his eyes a little until he realizes the fluorescent lighting is still on. sometimes he'll fall asleep or just be resting and he'll have a little dream about Hawaii or mom's belly such that he cracks this wide-open smile. then you can see his little tongue and gums and study even more of the detail. he, like every child, is a miracle. please pray that he continues to do well in his breathing and excreting fluids. no official update on his neighbor. he was on the hi-frequency ventilator today, but still there, which is good. one day at a time, for the dozens of us parents attached to that room.
-love-

their turn

both of conley's grandmothers have had the chance to hold him the last couple of days. i'm sure he liked that. he's now off the bubble CPAP until further notice (hopefully that notice does not come). he's been at about 30% oxygen (as opposed to our normal 21%) and seems to be doing really well. we're hoping he breaks 3lbs. any day now. they've been having trouble balancing his sodium levels and diuretics because he needs them to help his body excrete fluids but when he does so, his sodium levels drop and then they have to hold the doses of diuretics. that can be tough on his lungs, though as they can soak up fluid and get tired sooner. please pray that this comes into balance and that his muscles build up quickly and lungs mature so he can continue to progress down that road also. thanks so much. one day at a time.
-love-
p.s. we have very little information about this situation, but we think that one of conley's neighbors who came into the NICU under similar circumstances might be having a tough time. please pray for him and his parents. we don't have any names but Jesus knows who he is. thanks so much. very hard to watch having been in that similar position.

closing in

conley is closing in. he's 2lbs 15oz. for those of you who belong to 5 and half billion people who use the metric system, that's an ounce away from 3 pounds. to you same people, please don't ask us "standard measure" folk why ounce is abbreviated "oz." and pounds "lbs." because we won't have a good answer. anyway, conley is looking great, and enormous, with relation to how small he started out. he's now at 9 hours on nasal cannula and 3 hours on CPAP and actually doing better on the cannula (the one that gives him even less help breathing). praying that this progress will continue on. thank you. one day at a time.
-love-

elation

i was able to hold conley today, finally. it has been one snag after another, with sickness and tangled logistics. the nurse insisted i hold him today despite my fears of malachi's stomach bug. they are saying that it becomes more and more important to interact with him. i was happy to oblige. he's a whopping 2lb. 13oz. and he looks so good. they've moved from 6 hrs. on CPAP and 3 hrs. on nasal oxygen to 6 hrs. on both. looking into his little yet deep, dark eyes today, i could only recall doubting that the moment would ever come. such it is, one day at a time that no matter what tomorrow brings, today drew that far-fetched dream into a tangible reality. thank you jesus.
-love-
p.s. sorry for the flood of images. a short video just for fun, me holding the little man, linda (a favorite of ours, conley's and even malachi's) and beth (also great) weighing him, big brother seeing little brother for the first time in person. please keep us in prayer. you and your petitions are invaluable.

air supply

so, yesterday when i went in to see conley, he was up around 40% on the bubble CPAP and between 40-60% on the High-Flow Nasal Cannula. this morning when i called, he was at 30% on both of them, and the nurse said that he was actually doing better on nasal cannula. so that rocks. please keep praying he progresses that way. thank you so much. haven't gotten to hold him yet. malachi has had a stomach virus so we've been cautious about contact with conley. one day at a time.
-love-

6 weeks old yesterday

so conley seems to be digging his new spot in the NICU. he's been doing pretty well and was at 2lbs. 9oz. last night. i really put pressure on the nurses yesterday to encourage the doctors to give him a break from the bubble CPAP, but what do i know? they know what's best. beyond that, i've been impressed lately with the idea that my son is on the mind of God on a continuous basis: even more than he's on my mind or even bethany's. then i began thinking about how that is true of every single human being, even the people i don't like, or who hate me and might try to harm me in certain contexts. pretty interesting when we think of the idea "God loves the whole world" from a specific angle like that. anyway. he's been doing fairly well on that and his nose hasn't really swollen, so that's good. really hoping to hold him tomorrow. one day at a time.
-love-

relocation

so, conley is doing well. they have increased his feeds and he's tolerating that. he seems to be happy and content. he weighed in at 2lbs. 10oz. which is pretty great. also, we found out that he got moved out of the center aisle of the NICU to the outer aisle. that usually means good things, although it's nothing scientific. so, please pray that as the doctors try to set him up on a schedule of time on and off the bubble CPAP this week, that he not only tolerates it but excels in his progress. thanks so much. sorry i'm slow at pictures. i'll try to put up some tomorrow. i'm hoping to hold him this week. one day at a time.
-love-

needing a break?

we finally got back in today. we've been sick lately so we've avoided the NICU in a desire to protect our little hero from our diseases. it's so good to see him. he looks pretty great. he's been on the bubble CPAP for a few days now, and the authorities seem resistant to the idea of getting him on a schedule of time on and time off the CPAP. i really pressed the nurse to encourage the doctors in this direction. we know that his regular nurses know him well and they'll advocate for what they know is best for him. please pray that the nurses and doctor's have wisdom from past experiences and that conley continues to progress forward today. as soon as i sat beside him today, the nurse had to come over 2 or 3 times to turn down his oxygen requirement. i like to think he was happy to see daddy and mommy. one day at a time.
-love-

steady on

things are just going steady. gaining dozens of grams by the day. praying his body doesn't retain too much fluid. he's been doing really well on bubble CPAP, as his nurse says, he's a "good boy" and he's been "smart." hoping he can start taking some breaks from CPAP and be on the nasal cannula. headed toward the goal. thanks so much for praying. one day at a time.
-love-

step by step

hope everyone enjoyed watching the video as much as i enjoyed taping it and sharing it. conley had to go back on the bubble CPAP today, which is okay. kind of discouraged that he could just stay on the nasal cannula oxygen, but that's because i'm a sprinter, not a marathon runner. it's actually very normal for kids his size and age to go back and forth. they'll be trying to set him up on a schedule of time on the bubble CPAP and time just on the nasal cannula so he can slowly work his way toward lung maturation. please pray that goes well, and that he keeps moving in that direction and doesn't ever go back on the ventilator. also please pray he doesn't get a sore and infected nose or get sick in any other way. thanks so much. one day at a time.
-love-

safe and warm

here's conley snuggling with mommy.
the nurse shared two funny things with me today. one was that last night, all of his alarms started to go off and she went running over to his isolette (i promise, it gets funny) and there was conley, off in the corner and on his back. he had somehow flipped himself over onto his back. he was crying with his eyes wide open in confusion as to what had just transpired, although he was the cause of it. i know that feeling. secondly, when giving me an update of all of the good news, she mentioned that most of the babies at the NICU often need help with bowel movements. conley, however, needs no help whatsoever with such activities. i told her that ran in the family. anyway, he did, in fact gain 60grams yesterday (to her surprise) and another 50 today!

growing

he's inching forward, in fact the nurse was surprised to see he had apparently gained 60 grams since last night. she's going to weigh him again to double-check, but i think he's just packing it on. he's on nasal oxygen tubes. his time under the oxygen hood went well, but he started to get a little bit tired. thankfully, he didn't need to go all the way back on the bubbler, just to the oxygen tubes. he's comfy and doing well on that tonight, the nurse said. progress. big thanks all the time to God. every day is precious and a bonus. one day at a time.
-love-

peek

there's not really adequate words for this. it's amazing to see him untethered from all of his accessories. just a baby. a cute baby, actually. i'm only a little sorry that the glare makes it hard to see his perfect features, brown fuzz, and malachi-esque appearance. it's kind of nice just to savor it myself for a little while. the only hard part is loving him so much that we just want to cuddle him and bring him home. soon, we hope. the air that's circulating in his little bubble is still just at 40% oxygen and his stats look great. big thanks to God and also to the nurse who pushed the doctors to give him a chance at the hood when she saw how tender his little nostrils were. thanks to you all for the prayers. don't let up. one day at a time.
-love-

in the hood (yo)

so basically conley is the man. for a day or so now, he's been off the oxygen bubbler and under an oxygen hood. what that means is that he is breathing on his own. no more help and pressure in his lungs from any tubes or machines. the hood is giving him a mixture of air that is 40% oxygen. you are currently breathing 21% oxygen. i'd say he's doing pretty darn well. this is the next step in training his lungs and chest muscles to do their thing. he'll probably go back on the bubbler for a time, and then back to the hood and so forth. we are so encouraged and blessed. praying for no more major bumps in the road, but taking each day as a blessing, one of them at a time.
-love-
p.s. we'll snap some shots tonight.

another day

just a quick update, conley is progressing well. Thanks so much for your continued prayers. He's over 2lbs. 2oz. and growing. They will possibly be starting to give him a chance to breathe without the oxygen bubbler in the next couple of days. Please pray his little lungs and chest muscles pick up the art of breathing and send him further down the road toward being home. one day at a time.
-love-