When we were first in the CICU, a sweet friend dropped off a note and some cookies. She had spent a month in the CICU with her son when he was born, and she said in her note that it had been a "holy month" for them. At the time I thought she was quite likely a little crazy, because all I wanted was for it all to be some sort of mistake or bad dream. With hindsight, however, I can totally see what she means. I've never felt closer to God's heart than I did while we weren't sure if Caden would make it. In some ways, I think we are still in the midst of that "holiness." Life is a little different for us than it has ever been before. We're both still on "maternity leave" and because of Caden's feeding issues, we're basically tethered to our house. Which is making us a little stir-crazy, but also gives us the unique chance to spend lots of time together as a family, reading, and praying, and hanging out with each other and our kiddos.
I want to remember this time, so I thought I'd post what a typical day looks like for us right now. Plus, someday I'm hoping I wont even hardly be able to remember what it was like to feed my son through a tube.
We feed Caden at midnight, 3am, and 6am. I usually pump at 1am (at the end of Caden's midnight feeding) and then again at 5:45am before his 6am feeding. Adam usually takes the 3am feeding so we can both get at least a few consecutive hours of sleep. As I've mentioned before, the feeding process takes an hour to an hour and a half usually, although we've become a little more proficient to where it usually takes us an hour. We begin by offering him a bottle for about half an hour. If he doesn't finish it (which happens about 50% of the time) we give him the rest through his feeding tube.
Our day officially begins with Jayci waking up, usually somewhere between 7 and 7:30am. One of us gets up with her, while the other tries desperately to cling to the last vestiges of sleep while Caden rests like a sweet angel baby in his bassinet.
Whoever gets up with Jayci usually puts on Dora or Diego (her current favorites), "fixes her breakfast" and grabs some clothes for her to wear to school. "Fixes" her breakfast is in quotations because I dont know if it can be called that when it usually consists of handing her some yogurt, fruit and /or dry cereal while fumbling to make coffee, get ourselves dressed etc. If she's lucky, she might also get her hair and teeth brushed at some point. (ps - don't you love the little peek at our kitchen and the basket lights and rad concrete bar-top Adam MADE?)
While Jayci's at school, we both try and catch up on emails etc and do a little work around the house while also feeding Caden again at 9am and noon. He usually chills in our arms or his swing, which he loves (and we do too!)
We pick Jayci up from school at 1pm and then head back home for "rest time." I only wish I could still say "nap time," but these days Jayci only naps on the rarest and most wonderful of occasions. I suppose she does turn three tomorrow (what?! How did this happen?!) so I should count my blessings that she napped this long!
Anyways, after "rest time" (which isnt always very restful because Jayci is forever calling us for one reason or another, and we have to feed Caden again at 3pm), we usually do some sort of activity (coloring, playing outside, etc) with Jayci. Then 6pm it's dinner and medication time for Caden, followed by dinner for us. Typically, we are joined by a kiddo or two from the neighborhood for dinner. Somehow they always show up right at dinner-time . . .
After dinner we try to go for a walk around the neighborhood or take Jayci to the park. This is our best chance to build community and get to know those we've moved here to love on. It's usually my favorite part of the day.
After our walk, it's bath and bed time for Jayci. Then we either hang out on the front porch or watch TV together. Right now we're watching The Wire, because Michael Scott on The Office says he watches it so it must be cool. Caden gets fed again at 9pm, and then we try to make it to bed when he's done at 10 or 10:30 . . . but usually we are lucky to be in bed before his midnight feeding. Once we are in bed, we sleep soundly for a good couple hours few minutes until its either time for the next feeding, or one of the two kids starts crying, or there are gunshots down the street . . . In which case I wake up completely disoriented for a good five minute before I realize which of these scenarios has roused me.
Oh and did I mention that everywhere in there that I say we feed Caden, I also have to pump? And then I have to wash all the darn breast-pump parts and bottle and feeding pump parts . . . I am forever washing dishes these days. And now Caden's also figured out how to pull out his ng tube, so poor Adam usually has to stick it back down his nose a few times a day - fun stuff.
I apologize for the monotony and boredom of this post. I might as well have told y'all: "Feed Caden. Repeat." But that's a "typical" day for us lately. Although the doctor told us this morning that we could try feeding him by bottle only all weekend - hooray! We are still monitoring his intake and fortifying my breast milk to make it higher in calories. We will bring him back to the doctor on Monday morning to check and make sure he's gaining weight and that everything else still looks good. Let's pray we can keep that feeding tube out, because OH the freedom that will bring us!
I want to remember this time, so I thought I'd post what a typical day looks like for us right now. Plus, someday I'm hoping I wont even hardly be able to remember what it was like to feed my son through a tube.
We feed Caden at midnight, 3am, and 6am. I usually pump at 1am (at the end of Caden's midnight feeding) and then again at 5:45am before his 6am feeding. Adam usually takes the 3am feeding so we can both get at least a few consecutive hours of sleep. As I've mentioned before, the feeding process takes an hour to an hour and a half usually, although we've become a little more proficient to where it usually takes us an hour. We begin by offering him a bottle for about half an hour. If he doesn't finish it (which happens about 50% of the time) we give him the rest through his feeding tube.
Our day officially begins with Jayci waking up, usually somewhere between 7 and 7:30am. One of us gets up with her, while the other tries desperately to cling to the last vestiges of sleep while Caden rests like a sweet angel baby in his bassinet.
Whoever gets up with Jayci usually puts on Dora or Diego (her current favorites), "fixes her breakfast" and grabs some clothes for her to wear to school. "Fixes" her breakfast is in quotations because I dont know if it can be called that when it usually consists of handing her some yogurt, fruit and /or dry cereal while fumbling to make coffee, get ourselves dressed etc. If she's lucky, she might also get her hair and teeth brushed at some point. (ps - don't you love the little peek at our kitchen and the basket lights and rad concrete bar-top Adam MADE?)
While Jayci's at school, we both try and catch up on emails etc and do a little work around the house while also feeding Caden again at 9am and noon. He usually chills in our arms or his swing, which he loves (and we do too!)
We pick Jayci up from school at 1pm and then head back home for "rest time." I only wish I could still say "nap time," but these days Jayci only naps on the rarest and most wonderful of occasions. I suppose she does turn three tomorrow (what?! How did this happen?!) so I should count my blessings that she napped this long!
Anyways, after "rest time" (which isnt always very restful because Jayci is forever calling us for one reason or another, and we have to feed Caden again at 3pm), we usually do some sort of activity (coloring, playing outside, etc) with Jayci. Then 6pm it's dinner and medication time for Caden, followed by dinner for us. Typically, we are joined by a kiddo or two from the neighborhood for dinner. Somehow they always show up right at dinner-time . . .
After our walk, it's bath and bed time for Jayci. Then we either hang out on the front porch or watch TV together. Right now we're watching The Wire, because Michael Scott on The Office says he watches it so it must be cool. Caden gets fed again at 9pm, and then we try to make it to bed when he's done at 10 or 10:30 . . . but usually we are lucky to be in bed before his midnight feeding. Once we are in bed, we sleep soundly for a good
Oh and did I mention that everywhere in there that I say we feed Caden, I also have to pump? And then I have to wash all the darn breast-pump parts and bottle and feeding pump parts . . . I am forever washing dishes these days. And now Caden's also figured out how to pull out his ng tube, so poor Adam usually has to stick it back down his nose a few times a day - fun stuff.