Hellobee

I kept track of a day in my life so I could share it with you guys! I chose a day that I went to work and K went to school, and D didn’t have any appointments. This certainly won’t be the most exciting thing you’ll read today, but I always find peeks into other people’s lives and routines interesting. These days caring for D’s “special needs” (ie his feeding tube and doing PT) are so seamless with our regular routine, but I tried to identify them throughout the day.

On the days I go to work, my goal is to be there from 5a – 2pm, so I need to leave the house by 4:20a. That makes for an early start! Here we go…

3:20a – My first alarm rings, which I promptly snooze. I’m definitely reliant on hitting the snooze button a few times, and have several alarms programmed into my phone to try to encourage me to get up!I once tried an alarm app that made you solve arithmetic problems to turn the sound off, but I discovered that I was surprisingly capable at doing the problems while still asleep, so I gave up and just set several.

3:45a – I give up on snoozing. I go to check on K & D, who are both sleeping peacefully. D’s formula is running through the feeding tube – his backpack is hanging on an IV pole outside of his crib; we string the tube through, and just have it run up his sleep sack. I pause the pump to disconnect the tubing, slide the IV pole over to the changing pad, and then pull a (still sleeping) D up on the pad. We always change him at least twice in the middle of the night – since he’s literally eating all night long, his diaper gets too full and he’ll completely soak himself/the bed, or wake up too early and uncomfortable if we don’t. Before changing him I give him 2 meds through his feeding tube – these meds need to be given 3x a day, and I prefer to give it on a full tummy, so it’s part of my early morning routine. I reconnect his food bag and restart the pump so it doesn’t start beeping at me while I change him. D nicely sleeps through the entire diaper change – he’s very used to it! I lather him with Desitin, stick a new overnight diaper on, partially zip up the sleep sack, set him in the crib, reconnect the food bag (through the crib slats – when it lays on top it’s easier for him to get tangled up!), and turn on his musical mobile in case he stirs as I’m leaving. I run downstairs to grab the rest of his formula from the fridge to top off the food bag, so Mr. T won’t have to worry about it in the morning before the formula dose ends at 8:30am.

4:01a – Ok, now D is set, and it’s my turn! I get dressed (showered the night before to save time), brush my hair and teeth, put in contacts and slap some makeup on. On days when I am really lacking sleep I’ll bring contacts + makeup to work and put it on at like 6:30 before I really see too many people, so my eyes are less puffy!

4:18a – Head back downstairs, grab my lunch from the fridge (if I don’t pack it the night before, it’s not happening! I also pack K’s school bag and lunch the night before) and am in my car on schedule. It’s cold and dark and miserable outside.

That 53 is from inside the garage, it was actually in the 40s!

4:54am – My commute was fine, no accidents or other delays, so I park at work and trek into the building to start my day. I’m not the earliest person in the office, although most people don’t come in until at least 7 or later, so I have a few hours of quiet time to get a lot of work done.

9:00am – Mr. T calls on his way to work to check in with me and let me know how the boys did in the morning. His call reminds me to eat some breakfast (I try to hold off as long as possible, otherwise I just stay hungry from 5 on!) and take a mini-break.

11:30am – I grab lunch with coworkers. We regularly eat together in the cafeteria; it’s such a good break in the middle of the day and I normally feel more energized afterwards.

2:05pm – It’s so hard to leave on time! I really need to be in my car before 2pm to not be late to pick up K from school at 3, since traffic is so unpredictable. Thankfully traffic is smooth today and I make good time. After I call my MIL and Mr. T to let them know I’m heading home, I talk to Mr. T’s cousin (who’s like a sister to me), both to catch up with her and to help prevent me from falling asleep at the wheel!

2:50pm – I arrive at K’s school with a few minutes to spare, so I sit in the parking lot and check my phone (HB, feedly, email) since I don’t look at it at all during the work day. I then head in to get K who (for the first time ever) cries when he sees me because he wants to stay and play with his friends at school. His teacher tells me he had an accident after naptime – whoops! Potty training has been going pretty well but he slips up every now and then still. I end up picking him up and carrying him out to the car (although thankfully he stopped protesting, but refused to walk on his own). We head home (5 mins away) and say hi to D and my MIL.

Everybody loves selfies…

3:20p – My MIL heads out to her work. She told me that D last got up from a nap at 12, so I take him up to his room to put him down for a nap. I change him and stick him in the crib with his musical mobile on and blackout curtains closed. K comes up too and is anxious for my attention, since he knows he gets me all to himself while D is sleeping. K runs to the potty and I change out of my work clothes, and then the two of us head back downstairs for snacks. D meanwhile has turned on his aquarium and shows no signs of lying down or going to sleep. K needs to run to the potty again (I guess the first time he faked me out?) and then we color some. D is laying down and being quiet for a few minutes and then back up standing and talking in his crib, over and over. K and I draw and color; in particular K wants to erase everything and gets upset that you can’t erase crayons. Oh well!

4:15p – D is still up cruising around the crib, babbling and whining on and off, so I give up on him taking an afternoon nap. As soon as I go back into his room I know why – he pooped! I give him another dose of meds through his feeding tube and change him. I notice his diaper rash is coming back, so I use water + cloth wipes (which are old cloth nursing pads) and put some anti-fungal cream on under the desitin. We head into K’s room, and after a lot of whining I figure out that K wants me to rescue his lost cheetah & giraffe, who I find wedged between the mattress and the wall. He’s always loved little plastic animals; these two are the current favorites and go almost everywhere with him. K and D play together in K’s room, crawling in and out of the IKEA tunnel.

4:45p – I convince the kids to come downstairs with me so I can start making dinner. I hook D up to his food bag and backpack to give him his last ORS dose of the day. I let him crawl around the kitchen for a bit while I start getting K’s dinner ready (“circle pasta” aka tortellini by request, chicken nuggets, and steamed broccoli). I hold D’s hands and practice walking around (keeping an eye on his foot rotating out, trying to figure out if it’s getting better or worse). D soon starts opening up cabinets and almost pinching his fingers, so I stick him in the playroom next to the kitchen, and block off the entrance with a box of megablocks to keep him safely inside and entertained while I finish dinner. While things are heating up and the broccoli is steaming I start prepping D’s ORS doses for the next day (I set everything out so my MIL doesn’t have to measure it). K runs around, playing some with D and some by himself, repeatedly asking me if his pasta is ready yet. I heat up some frozen cubes of baby food for D. I have not yet gotten into the groove of cooking when I get home from work, so heating up frozen stuff is the best I can manage – just keeping it real for you guys!

D likes to hold things in his mouth like a puppy!

5:20p – K’s food is ready, I take little portions of everything and dice them up very small for D to practice chewing and picking up. I grab the boys (who both protest and want to keep playing, sorry guys!), stick D in the highchair and K at his table and give them their food. I let D pick at his finger food while I make his formula for the night (I measure out the boiled water and formula in a big pitcher, add a medication, and then divy it into bottles). Although it’s good for 24 hours, I often don’t get a chance to make it until right before I need it!

5:45p – D’s ORS dose finishes, I empty out the bag and fill it with the formula I just made. In the hospital, they use a new bag for each dose, but our insurance only gives us one per day. In the early days when he would have ORS and formula switching throughout the day I would have to rinse out the bag and the tubing, which was a huge pain! I stick the bag in the fridge and then start feeding D his puree (and encouraging K to continue eating his food).

6:00p – I finally give up on anyone eating more food (although they both did pretty well), so we all head upstairs for baths. D is starting to get grumpy since he didn’t take his 2nd nap. Once we get in D’s room I realize I forgot to grab his backpack + formula, so I take a risk and carry a totally naked D back down with me to go get it – and thankfully don’t get peed/pooped on! It’s harder to run around after the bath so I prefer to have everything in his room waiting, and I don’t like to have him hooked up in the bath since there’s a greater risk D or K will pull on the tube. I disconnect D’s feeding tube extension so he just has the button on his tummy for the bath. D hops in first while K goes potty and then joins him. I scrub everybody, wash hair, and give them time to play.

6:20p – D seems like he wants out, so I get K out first (since he obviously can be more independent), and he runs around upstairs in his hooded towel while I get D diapered, lotioned, dressed, and ready. I also reattach his feeding tube extension and start his nighttime dose of formula. Mr. T comes home, which makes all three of us happy! Mr. T takes over getting K ready while I finish D and start his simple bedtime routine.

6:35p – Since D’s grumpy and tired we skip reading a book and just cuddle in his armchair for a few minutes before I stick him in his crib (and string the tube through the slats again). He promptly goes to his aquarium to turn on the lights and music and then lays down. He doesn’t fall asleep right away but also doesn’t protest. He sleeps with a bright nightlight (so I can see what I’m doing for all the middle of the night stuff) and the door closed. I join K & Mr. T, who are in the midst of a fight about cleaning K’s ears and nose. Mr. T wins (as always) and we all head back downstairs.

7:00p – Mr. T and I heat up and eat our dinner, which is leftover shrimp curry, raitha, and rice from my lovely MIL. K runs around playing and talking to us.

7:30p – I sit down with K to do puzzles. He loves puzzles but has a hard time doing them when D is awake (since D will either crawl over them or try to eat the pieces), so we often will do them when D is sleeping. I give him several warnings that bedtime is approaching but he still gets upset when it’s time, because he always thinks he should be able to finish the puzzle first – and these are 50-100 piece puzzles that take a good chunk of time!

7:45p – We head back upstairs for K’s bedtime routine. After potty + brushing teeth, we read About Marsupials and I’m a Big Brother – K knows that he only gets two books but always asks for a third anyway. I am SO THANKFUL we’re out of the rut of the The Little Mermaid and Fozzie Visits the Doctor – which he requested every day for over a week! We cuddle for a minute and then say goodnight. He sleeps with a nightlight and his door open, although he knows if he goes wandering around the house I’ll stick the baby gate back on the door – thankfully he stays put most of the time! I check on a peacefully sleeping D and head back downstairs.

K is animal crazy and loves this “About” series, we have several of them! 

8:00p – Mr. T goes to work (this time to his company, different from his day job). I do dishes and clean up a bit from the day, and veg out some. Where does the time go?

9:00p – I hear D start crying on the monitor, so I head up and change him. Poor D’s rash is getting worse, and he’s pooping more than normal. I think it’s due to two particular meds and decide to stop giving them to him until I can sort this out with his docs. I put D in a sleep sack sine the house feels chillier, and stick him back in the crib. On my way back down I check on K to find him naked and asleep – he’s recently been stripping down to his underwear at night 80% of the time! I cover him up with a blanket and leave him be; I know from experience if I put his pjs back on he’ll just take them back off again in a few minutes.

9:20p – I finish cleaning up, and jot down notes from the day for this post since I won’t get another chance until tomorrow when the kids are asleep. I prep D’s meds & baby food for my MIL to give him the next day. I top off D’s food bag with more formula, add an ice pack, and plug in the pump to charge overnight. K doesn’t go to school tomorrow so I don’t have to prep his lunch or anything; my MIL will take care of that. I take a quick shower and figure out what I’ll wear to work.  

D’s formula + medications for 24 hours

10:10p – I read for a few minutes (Me Before You, for the HB book club!), text Mr. T goodnight and go to sleep. Mr. T will top D’s food off again when he gets home closer to midnight.

12:40a – (I know this is technically the next day but still!) – Mr. T is home and taking a shower when D wakes up crying again. I’m pretty soundly asleep but finally wake up and get out of bed to groggily change him again; poor D’s butt must really hurt. Mr. T shows up halfway through and lets me tap out since I have to get up in a few hours to work.

And then it starts all over again! This system is only sustainable because I work part time – I don’t think I could pull those hours (and that amount of sleep) 5 days a week.

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Do you have long days? Did anything in my day sound familiar to yours? Are you surprised at how little (or how much) of the day is related to D’s special needs?