Category Archives: 30 something

A Day in the Life, Updated #1day12pics

One of the most frequently pinned posts here is A Day in the Life, in which I describe a typical day for us as a family with a medically complex child. So much has changed since I wrote that a year and a half ago- June is walking, climbing, and communicating (signing), she has a g-tube, is NPO (can’t eat by mouth until her trachea fully heals from the LTR surgery this summer) and we have a new little guy here too!  So today I am issuing an update in the fun “one photo an hour” format that has been popular for years but, in true 30-something-mom fashion, I only recently learned about.  I chose October 30th, and I have (at least) one photo from every hour of our day, plus a description of what we were up to- the medical, the mundane, and the unexpected. My hope is that by sharing a little of our experience, I can provide support, raise awareness, and dispel some of the mystery surrounding the special needs/medically complex life.

6 AM

6AM

I wake up, Rowan is awake*, and we eat breakfast.

I have one baby monitor watching June and one listening to Miles.

Rowan tries to persuade me to take my coffee, breakfast burrito and cheddar biscuit upstairs so we can play Jurassic Park on the computer during breakfast.

*We opt for early bedtimes for the kids (6-7pm) but that *does* translate into early  mornings, too.  Rowan is up by 6 most days, and June wakes shortly afterward.  Miles sleeps a little later some days.

7 AM

7am

I see on the video monitor that June is awake.  We complete her morning routine including turning off the overnight humidifier, turning off the pulse ox and removing the probe, draining the G-button extension, administering her three morning meds via the G-button, changing clothes and diaper, and then grabbing the new feeding bag, new suction catheters, feeding pump and backpack that we need for the day.


7am (2)

While I gather supplies June gets away from me and proudly sneaks some crackers since the baby gate securing the kitchen was still down from the previous night.  Much of my day is spent keeping June away from food since she is NPO.  Much of June’s day is spent trying to acquire food.
7am4

In addition to baby gates securing the kitchen, we keep our kitchen chairs up high or with cushions removed so June can’t use them to reach food (she’s an expert at this).

7am3

 

I mix June’s formula for the day using blender bottles, place June in the high chair and connect her feeding pump to her extension for her morning meal.

I check our pharmacy hours on the web as they were closed the night before when we went to pick up meds.  Sadly, new shorter hours are in place.

I feed the dogs, note that one of them is still inexplicably limping, and let them outside.

Miles cries but I find him still sleeping when I check.  I sleepily decide it’s a Diet Coke morning.

I sit down to do a lesson on my Signing Online course, but June is signing about reading books and asking here Daddy is.  She quickly decides she also wants to watch Baby Signing Time, so I put a DVD on from my instructor set.

I do the 10 minutes of floor exercises that I attempt to fit in each day, and amazingly no one jumps on me while I do.

8AM

8am

June signing cereal

Rowan eats a snack and the instant he vacates his chair-with-seat, June climbs up to finish his cereal.  I remove her and a tantrum ensues.

Everyone needs a diaper change, resulting in a very fragrant aroma near the kids’ rooms.  I turn the bathroom fan on, and June walks up and down the hallway outside signing SCARY POTTY.

June’s feeding pump finishes and I remove her milk backpack.  She finds and disassembles the backpack, proudly signing MILK.

9am

I nurse Miles.

Now that it’s business hours, I call the durable medical equipment (DME) company about some problems with our last shipment. (This is that part-time job all special needs parents have.)

While I help Rowan disassemble some Legos, June presses Mile’s bouncer down as far as she can, turning it into a baby catapult. I intervene to prevent Miles going airborne.

I sneak away to brush my teeth and put my contacts in.

9AM

9am3

June tries to steal my cheddar biscuit snack.

I suction June’s trach.

The kids play, and it gets rough when conflict arises with Rowan saying, “JUNE YOU CAN’T TOUCH MY TOYS!” while shoving, and June signing to me STOP, BROTHER HIT AGAIN.

The hospital calls to apologize about a billing error I inquired about earlier this week.

I call our car dealer to follow up on a maintenance letter we received, and I add a carcappointment to Greg and my Google calendars.

June has a tantrum that I won’t let her play with the clean dishes in the new dishwasher.

I prepare and place June’s feeding pump backpack on her for her next feed.

10 AM

10am

10am1

Rowan and I enjoy “smuggling” together.

Rowan asks me to “charge” his iPhone and wonders if it takes pennies. June takes his discarded pennies and places them around Miles in his bouncer.  Miles is awakened unpleasantly by these and other gifts

The kids draw together as their contribution to birthday thank you cards, and Rowan tries to convince June to draw on her forehead.

10AM5

Being unsuccessful in convincing June, Rowan draws on his own forehead.10AM6

At point point, everyone was upset about something different, but the details elude me.

11AM

11AM

June plays with stacking toys while Rowan plays on his LeapPad.

June’s feed ends- I remove the backpack and refrigerate the feed bag.

Another round of diapers.

I receive a follow up call from Medicaid about June’s application.  (For a wonderful post on why June would need Medicaid, despite having private insurance and two plan-prepare-saving-oriented parents, see this wonderful post by a fellow special needs parent.)

I slowly work on the written part of the kids’ birthday thank yous.

12PM

12PM

I nurse Miles, and he drifts back to sleep, guarded from dog noses and sibling presents by the pack-and-play.

The older kids finish playing and sit down to lunch.

June goes down for a nap during which she wears a pulse ox which will alert me if her heart rate or oxygenation venture out of the specified safe ranges.

1PM

1300

Rowan and I read the Lorax while June and Miles sleep.

I attempt to nap, but am awakened by Miles needing to nurse.

I download a free augmented communication app for June to try, as recommended by her speech therapist.  But it turns out this free version doesn’t work independent of the paid version so I delete it.

2PM

June wakes up from her nap and insists on keeping her pulse ox cord on her foot.

Rowan has a tantrum and refuses to go into time out.  He loses his Legos as a result.

June is also upset that she can’t eat chocolate.

Someone is upset that a LeapFrog toy is out of batteries so I replace them.

I decide its time for a snack.

June settles down and asks to look at the picture frame on the wall- a favorite past time of hers is signing the “name” (like Grandma) of each person she sees in the photos.

1400

And Rowan likes a busy bag activity I set out.

1400 3

3PM

Sphinx is being unusually tame, and Rowan decides she needs to try on some hats.

1500 1

1500 2 (2)

I read There’s a Wocket in my Pocket with Rowan and June.

1500 2

Miles nurses and Rowan plays at app on his phone.

June jumps on the exercise trampoline, asks for chocolate, then ventures outside.  Sahara positions herself so she can see all three kids at once.  She is, after all, Assistant Mom. June comes back inside when her diaper falls off- she finally agrees to have the pulse ox cord taken off too.

1500 4

June gets into the kitchen- I suppose one gate was still down from her naptime- and plays with the stinky dog food while Sahara begs.

1500 5

I work on my phone including returning emails, reading in my Bible app, and laughing at these parenting comics.

4PM

1600 2

Greg is off of work and we have our customary commute phone call about the day so far.

I ask Greg to skip going to the pharmacy despite their shorter hours because I am looking forward to finishing the busy day at home and relaxing.

Rowan plays with Miles, June has fun cleaning up toys, I check on my Facebook pages, and Miles practices smiling at everyone.

5PM

1700 2

Miles has smiling down.

Greg hangs with the kids while I get dinner ready.  I discover I ran out of alfredo sauce, so I make the very grown up decision to use left over Papa Johns garlic butter as a pasta topping.

Everyone eats dinner.

While Greg stays at the dinner table with the kids, I prep June’s room for bedtime including filling up the humidifier with water, drawing up her meds, preparing her overnight feeds and preparing her trach care supplies.

6PM

Greg and I take turns putting Rowan and June to bed respectively.

While Greg puts Rowan down, I put the kids’ drawings into the completed thank you cards.

Being Friday, Greg, Miles and I settle in to enjoy the week’s spoils collected on the DVR including Blackish, Modern Family and the feature presentation- the Blacklist.

Blacklist

(OK, not a photo, but I already have more than 12 from earlier.)

 

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Post-Hospital Haze II

We are finally emerging from the post-hospital haze, which is similar in almost every respect to the post-hospital haze from last year; it occurred during the same months, I went through the same cleaning rituals- mostly gutting the fridge and vacuuming dog hair- I FINALLY saw friends, and I’m working on reading a Brandon Sanderson book.  Well, I’m reading like 7 books but a Sanderson novel is in the stack.  I even delved into the accumulated DME supplies with intentions to write a post about them soon. Added to the mix this time though:

Adventures in g-buttons 

June got a gastronomy button during her hospitalization, and there’s been a learning curve involved for Greg and me.  They say don’t cry over spilled milk.  Well, what if the milk is spilled several times a day throughout your house and onto your toddler’s and your own 3rd, 4th, and 5th outfits for the day, and onto furniture and sheets, for several weeks and it attracts ants- a different species in each room actually- and THEN your steam cleaner AND your washing machine both break?  Cry then?  Well, I didn’t cry.  But I did harass hubby with play-by-play texts every day and then hand the children and the house off to him the millisecond he arrived home all of this week.

Adventures in hyperdrive

After a hospitalization, all of the normal elements of life are multiplied by a factor of 2, 3, 6, or 10…  The kids want to catch up on missed parental attention.  Medical bills and filing tasks have piled up. Lots of specialist check-ups have to happen after the hospital stay- especially because June had had so many med and surgery changes at once and she’s having some unexplained tachycardia.

Tachycardia Plse Ox

211 is her heart rate here. Ya that’s 100 points too high.

New prescriptions and new DME orders need corrected and followed up on.  New reactions to these new prescriptions and DME orders need corrected and followed up on (see above on g-buttons and a 211 heart rate).  And after each visit, phone calls must be made to keep the whole medical team (doctors, nurses, home therapy, schedulers, DME, insurance) in the loop.  Random house/life things have accumulated, like chasing down a lost insurance check to replace our roof, realizing the car inspections are expired, and troubleshooting brown patches in the yard before we get an HOA letter.  Also, Rowan has discovered video games via Lego Jurassic Park played on the computer.  And in true gamer fashion, he’s broken a controller in frustration and is breaking my keyboard key. by. key. Right now I have no zero button and no [letter missing from the word btton] btton.  I’m actally typing everything withot that letter and then atocorrecting.  Its tremendos fn.

Adventures in pregnancy

This pregnancy has flown by with no complications.  I’ve been too busy to think much about being pregnant aside from taking my prenatal pills and limiting my caffeine.  There were no weekly “what sized fruit is the baby!” tracking and no monthly belly photos.  I was, however, quite aware of and anxious about passing the points in pregnancy at which June was diagnosed with tachycardia (30 weeks) and when June was delivered early (34w 3d).  Both mile markers passed without incident, and I’m relieved. But now at 35w 4d  I’m acutely aware of the fact that I’ve only been this hugely and uncomfortably pregnant once, and I was on bedrest at the time with no children at home.  I’m tired.  My belly keeps knocking things over.  This baby is doing gymnastics constantly.  The heartburn is no fun.  Strangers look at me warily like I’m a ticking bomb. And this is the first time ever that I haven’t had a weekly look at my baby in the third trimester; because of my swelling and blood pressure issues with Rowan, I got a biophysical profile ultrasound and non-stress test every 4 days toward the end, and with June (who never made it this far in pregnancy) I had a weekly fetal echo cardiogram AND ultrasound.  In my experience, having an uncomplicated pregnancy is the anomaly.  It is an odd experience.

upcoming posts?

I have 11 posts drafted (incomplete and not scheduled) and two additional to add.  I have lots of good intentions. Lots of ideas.  HOWEVER, I will be very impressed with myself if I post again before the baby arrives.  See above.

Coming Soon

Coming Soon

Soon I will blog about travelling with a medically complex kiddo. Right now, I am recovering from travelling with a medically complex kiddo (and a 3 year old). We all flew out of state for a week recently and had a wonderful time seeing family. And the kids saw snow for the first time! Greg flew up and stayed with us a few days, but had to return sooner for work. The kids and I stayed a week, and I had plenty of extra hands helping us AND providing meals (woo!!), for which I was so grateful. The kids were hams- loving all of the attention. Rowan didn’t want to return home!

It was a great trip, but my pregnancy symptoms thought (wrongly) that this vacation would be a great time to turn on the fatigue, dizziness, and nausea. And once we returned home, foot and leg pain added to the mix, which is a new one for my Wacky Pregnancy Symptoms list. The leg pain must have been exacerbated by the 3-hour flight with a 16-month-old on my lap because that first evening at home, it was painful even to walk. But now my legs just feel slow and heavy occasionally rather than painful. Also, as mentioned in the comments of last post, we successfully night weaned June with almost zero effort; she was just as ready as I was for nights of blissfully undisturbed sleep!!

So, I’m almost recovered, rest- and energy-wise, and I’ll be back to my usual routine soon. Stay tuned for the Travelling with a Medically Complex kiddo post, which will feature a printable if I can get my software to cooperate.

Walk four and a half miles in my shoes…

Greg received the gadgety item on his Christmas list- a FitBit- last month. It’s a fancy pedometer and activity/sleep tracker, and you can connect with your friends who have FitBits via their app. The default personal goal is to take 10,000 steps per day- apparently quite a ‘feat’ for most. (Spotted a pun!) Greg loves it and was excited for me to get one so we could be nerdy and athletic together. I was not very interested at first except for the sleep monitoring part; I’ve had terrible sleep since I was a kid plus I’m still getting up 1-2x per night with June, so I thought some data might be interesting and helpful. But the more I thought about it, the more interested I became in quantifying my steps and activity as well when I’m home with the kids.*

No one truly gets to observe a stay-at-home parent in their natural habitat because a visitor/observer’s presence changes the environment; the visitor might be entertaining the kids or alternatively the mom might be trying to settle the kids into different activities than usual to allow her to focus on the guest. Either way, this activity is different- less active, at least it is for me- than when the parent is the only authority figure, the only tall person, the only food preparer, the only referee, the only animal tamer, the only appliance operator, and the only entertainment director present…and is also getting chores done all the while. I became quite interested in how many steps I do take in a day, because I suspected it was close to 10,000 already, just from my activity around the house.

While, fortunately, few people believe the “eating bon bons and watching Oprah” stereotype anymore, this stay-at-home parent lifestyle remains mysterious to many. Here’s a tiny piece of the puzzle, courtesy of my new FitBit:

 FitBit10000

 This was an average weekday with the kids, and we didn’t go on a walk or exercise.  Apparently I walked 4.64 miles within our house and at the grocery store after the kids were asleep.  (Actually, it missed some of my steps at the grocery store because when I’m pushing a cart, the FitBit on my wrist isn’t moving with my steps.)  Here’s a little more of the picture:

10000Steps

And here’s the sleep data page, for those interested.  I’ve always wanted info like this, but the free phone apps that record it rely on transferred motion of the mattress, so they don’t work with certain beds like TemperPedic.  Since the FitBit is worn on your wrist, it can accurately track your movement during sleep regardless of what kind of mattress you have.  But wearing it while you sleep also takes some getting used to.

 Sleep Data

I’ve officially been converted- the FitBit is a pretty cool gadget even for those who simply want to monitor their existing activity rather than aspiring to any new goals.

*You can also input your food and water intake into the app, which I thought might be useful for my pregnancy; I’m 7 weeks along, still off dairy and soy, still breastfeeding June, and I have a history of weird pregnancy symptoms so it might be handy at some point to watch my nutrition carefully. My doctor has already let me know I’ll need to take an early glucose tolerance test in a few weeks because I failed my 1-hour test last pregnancy (but passed the 3-hour). I think the probability of developing gestational diabetes is low, but I wonder what exactly I might end up eating if I have to cut sugar or carbs in addition to dairy and soy.  So if I do develop it, at least my curiosity will be satisfied- if not my appetite!

30-Something

I turned 31 recently (gasp!).

I am officially a “30-something,” and I’d like to share a heads-up with those travelling this way which came as a complete surprise to me- birthdays after 30 are completely different than those before.  After 30, the event of adding one number to your age is rather nondescript and indistinguishable from the years surrounding it. I think that’s one reason for the “30-something” label. The 20’s are littered with milestones, from no longer being a teen, to reaching drinking age, being a “quarter century” old, and then marveling at the big 3-0 continually looming larger ahead.

Well, on the other side of 30, there aren’t any milestones nearby except maybe 40 sitting in the distance.  For us Texans, if the journey to 30 is like taking I-10 through Houston to San Antonio, the journey to 40 is like continuing through to El Paso.  Be prepared to make your own entertainment, because you aren’t likely to high five anyone to celebrate that you’re “finally 34.”  You realize that TV commercials now address you with, “Are you between the ages of 30 and 55?” like there’s enough similarity across that range of ages that they can all be lumped together.

But birthdays in your 30’s are by no means bad, or boring.  They just aren’t universally celebrated, and you have to make what you want of them yourself. I’ll venture to say the same is true of the decade as a whole.  Just like there are no banners available at the party store announcing, “I’m turning 34,” there are fewer marked paths in the 30’s, speaking very generally.  For many people, the preset degree plans and/or internships and/or entry level job tracks and/or the beginnings of marriages and/or children took place in the 20’s.  The 30’s are like open water, comparatively. Personally, I think that’s exciting. Instead of universal milestones, you decide what method to navigate by, which landmarks are significant to you, and what you keep on the horizon.  To way-WAY oversimplify, my navigational method is my faith, and this blog-of-my-30’s is like my travel notebook.  I love figuring this journey out and working alongside others, both in person and in the ‘blogosphere,’ as they do the same.

30’s: The Real Story


At six months into my 30’s, I feel that I can provide a bit of information about what it is like on the other side of three decades.  At least I can dispel a few myths about this era. I had always thought of 30 as a base camp before the final leg of the big journey “over the hill.”  I imagined that crossing the threshold which left my 20’s behind would be a momentous event in my aging, and many things would instantly be different.

1. I’d take myself more seriously.  I’d finally feel like an adult instead of a long-term extension of my 16 year-old self.

2. Others would take me more seriously and assume I have a reasonable level of competence in most areas of life.

3. My wardrobe would contain much more linen, like I was always just walking off the set of Mad About You.

4. My life would be a long-standing and comfortable routine, where the biggest adventure any given week would be buying new bath towels.  Again, I think Mad About You served as my mental 30’s template.

5. In this comfortable routine, existential questions of purpose would have been resolved along the way, or simply evaporated with time.

Well.  Let me tell you.

1. It’s partly true that I take myself more seriously, because I no longer feel that my teenage years were “not that long ago.”  How could I when I recently realized that I started high school 15 years ago?  But it still startles me when medical professionals ask my age (because those are the only people who dare to ask nowadays) and I must respond, “30,” suddenly feeling very like Neo waking up outside the Matrix for the first time wondering how in the world did I get here.  And incidentally, I’m treated like a geriatric patient now.  When I inquire about an ache or pain, the doctor makes a pinched, patronizing face and begins, “As we age….”  This is especially true regarding my pregnancy, where the phrase “advanced maternal age,” has actually been thrown around a few times in my presence. (?!?)

2. It’s also partly true that others take me more seriously in that, on the rare occasions that I attempt to buy alcohol, I am never carded.  But in terms of quickly being judged as competent in any situation, especially now that I’m a stay-at-home mom, no.  The only place that people ever assume I am in my element is at the grocery store, where dazed-looking men ask me which of the 12 varieties of apples they should buy for their fishing trip snack stash.

3. About 50% of my clothes are 8 or more years old, and will never again be appropriate to wear, post child-bearing.  I tell myself that I keep these items for upcycling sewing projects. 0% of my wardrobe is linen.

4. There is no long-standing or comfortable routine when rising small children.  Maybe I’ll revisit the Mad About You template for empty-nesting.

5. For those of us with existential questions, the 30-year mark holds no special power to help answer or shed them.

However, what has completely surprised me about this time is realizing that I have well over a decade of my very own decision making behind me.  Past the age of 17, my choices and my time were never governed by any person or institution.  What at first may seem obvious and mundane to others- that I employed my own judgement and continually built upon the consequences of those choices over the last decade- was a surprising source of joy for me recently.  Because I can remember some utterly discouraging times and difficult choices- the kind where even the right choice feels terrible.  At the time the situations seemed unfair, confusing, and senseless.  But looking back well after those storms passed, I know that not only did I make it through, but the choices I made in the midst of the difficulty were right.  And I can start to see how pieces of the story- even the jagged ones- fit together, and it all makes a little more sense.

It is this act of looking behind me that hints at an answer to my questions of purpose.  It encourages me to trust my judgment, regardless of the esteem in which others hold me at any given point. It reminds me to be purposeful in what I am building with my choices. Because in another 10 years, I’ll look back at what I am cobbling together with my time and resources right now.

Here’s to the next 30 years.

This I Know

Here I am, 30 years old.  I loved blogging throughout my 20’s, and I decided to start fresh for this new decade.  I ended my 20’s in the middle of a puzzling spiritual journey.  I felt like I was wandering the desert like the Israelites did in the Bible; as though God was with me the whole time, but I knew I wasn’t at home, at peace, and restful.  I was confused and frustrated as this “season” of searching and wandering dragged on.  And it continues still.  But at this point, today at least, I’m much less confused and frustrated than I have been in recent months.  There are a few things I know.

My Christian faith is my foundation, and I am continually amazed at how close and responsive God is in our walk together.

God created me with unique interests and talents to be used in his service, and figuring out “who” he made me to be and “what” he wants me to do will always be an ongoing, changing process in my life.

My 30’s are going to be awesome- the best decade yet.