Sept 25 -- A Whole New Chapter for Madison

Feels like a brand new day!

While it's only been three days since the procedure, I think we will look back at September 25th as the inflection point when things finally started to really get better for Maddie. And by extension for all of us. 

Since then, she's had several retches (usually when trying to lay on her back with anything in her stomach). She tries to throw up but can't, and unfortunately that gets uncomfortable... her face turns red and she gets hot and sweaty... after a few minutes it subsides and she's back to her normal happy self. Usually.

Last night she woke at 2am with intestinal gas... 45 minutes of screaming and thrashing until she got some bubbles out and passed out. Followed shortly by us passing out.

She able to tolerate being on her back for a short time; a few minutes, it seems, without getting gaggy. Sometimes we wonder how she manages to sleep on her back at night (her crib is inclined, but still).

And all day long we're still venting her... about hourly she'll need to push out a bubble of gas from her tummy, even though we're not putting food in her belly anymore.

Cute new GJ button!

Still -- this is all WAY better than it was before we changed from the G-tube to a GJ tube. Really. It's not night and day... but it feels like a whole different and more level of insanity.

Before, she could generally only take a few seconds on her back, not minutes. The gas was at least 20 times as prolific; so we spent 12+ hours a day holding her and venting her. Couldn't set her down and couldn't leave her unattended for a minute because she was so prone to retching... all day you were on pins and needles vigilantly listening for the warning sounds of a bad gas bubble brewing.

You know that feeling when you step out of the car into a really cold wind and you just grit your teeth and mostly hold your breath until you get into the house... yeah it's felt like that for the last year or so.

So while we still have a long ways to go and while we're still figuring out a new schedule and the mechanics of GJ feeding, I'd say this is finally on the solid upswing.

Gotta go... time to feed her again...

Baby Formula Calculator

We have had to experiment with different concentrations of baby formula; oddly enough I could not find an online calculator to let me easily figure out how much water and formula to mix to obtain the concentration (calories per ounce) that I wanted.

So I made this -- I hope you find it useful! (Use arrow keys to navigate.)

<< Or Click Here to Embiggen >>

This formula calculator assumes that your formula follows the same "standard" that I've seen on every formula I've checked; that is, 1 scoop of formula per 2 oz of water to create formula with 20 calories per ounce.

On the formula cans I checked, this "caloric density" was stated in the nutrition area as 100 calories per 5 oz serving. They also stated that each scoop of formula added 0.2 oz to the final volume; so that's what I used in the calculations.

This calculator lets you run the numbers 3 different ways:

1) If you are trying to hit a particular total number of calories with a particular caloric density -- for example if you are making up a pitcher for the day -- the first row should do the trick. Just enter your calorie target and desired concentration in the green cells.

2) As a variation on #1, if you have already figured out that you plan to use a particular number of scoops of formula and know the caloric density you need, try the second version.

2) If, instead, you want to find out what caloric density a particular combination of water and scoops would yield, the third row has you covered.

If you find this useful please drop me a comment! (Also if there are any other calculation variations that you would find extremely helpful, let me know and I'll improve the calculator if I can.)

4/3 years old!

Thank goodness I'm cute...

Our "Maddie Maddie" is 16 months old today.

Hard to believe. The last few months have been a blur as we've doubled down on trying to get her back on track; it's still been impossible thus far to get all of her prescribed therapies in, and she's not finishing her pitchers of formula these days... which just means we have more work ahead of us.

She's 16 months; but in many ways is the equivalent of a 6-month-old. She's responsive and interested in people, toys, etc... but is stuck in a body that just hasn't developed yet.

We'll get there -- and today things are still far better than they were just a few months ago -- but just for posterity here's where we sit today:

• She can't yet walk, crawl, hold in "4-point", or even sit unassisted.
• Still waiting for that first real word! (by now Sydney had a 250+ word vocabulary)
• Spending ~20 hours/day tending to Maddie, one way or another...
• Fighting constantly to get enough food in her g-tube
• Alternating nights "on duty"... she is on the pump all night, so you need to change the bag once around 1-2am, and also need to vent Maddie between 4 and 10 times a night. We tag out at 6am so the night person can get a three hour nap, at least...
• In theory, we're supposed to have her in her ankle braces at least an hour in the morning and in the afternoon.
• Should be putting her in her stander at least twice a day...
• Should be practicing eating purees 2-3 times/day...
• Floor time -- she needs as much as she can get. But with her tummy it's a challenge to get 10 minutes/day.
• Poops and baths are generally a 2-person job, due to the vent tube.
• Bubbles vent gurgle vent bubbles vent vent vent... aaaaaarch!... vent...

She clearly wants to move and do things, which means everything. And at least we are, perhaps, done with the retching at last! Nothing we did; she seems to finally be growing out of that... and it's been a few weeks at least since the last non-stop full-volume inconsolable thrashing and screaming fit at 1am. (Wow gas pains are fun, right?)

Still things are progressing, albeit slowly. One day this will all just be a memory. The day we get to purge our house of all the medical supplies that currently occupy her room and the kitchen -- well, that will be a beautiful day.

"We put one foot in front of the other..."

What a year (Maddie's challenges)

Sydney is the best big sister ever!
Playing with Maddie in her "stander".

Whew... what a year... 

June 29, 2012 was a bit of a turning point for the ol' family... that was the day we had to check into the hospital because Maddie wasn't eating like she should.

Since then it's just been one foot in front of the other, as we help her work through these issues and get to the point where she can hit the ground running (at this point we'd settle for crawling) and keep growing naturally.

So FWIW we've been through these phases:

• Two weeks in the hospital, trying to get her breastfeeding, supplementing nutrition everywhichway.
• NG tube putting formula into her stomach, to supply calories to reverse her wasting...
• Some success eating formula from the bottle, and we are discharged from the hospital with some work to do.
• Settle in to life with a food pump more or less around-the-clock.
• Cut back on outside activities, responsibilities...
• Just not gaining weight like she should... do we do surgery or not? Really an agonizing decision for parents to have to make.
• Surgery. When well. OMG huge sigh of relief... should all get better from here, right?
• Recovery, eating through the g-tube...
• Slow slow slow slow weight gain while spending about 18 hours/day tending to her intestinal needs. Gas, coughing/gagging, retching... but at least she's gaining weight! All will be OK, right?
• Oh crap she lost weight... yes only 1/2 pound, but that's 3% of her weight so still -- yikes.
• Refocus. Shed still more external responsibilities/activities.
• Back on the weight gain train. By now it's pretty much the only thing we can focus on. No work, no friends, and unfortunately not enough Sydney attention... but we're going to get through this no matter what.
• Glimmers of progress. She's gaining weight, getting less prone to startling, and getting stronger... still can't crawl or do what a 14-month-old would normally do, but it does seem like things are heading in the right direction.
• Settled in for the long haul. One day at a time. One foot in front of the other. We're marching on.

At this point it really definitely like we'll get through this, but it's taking everything we've got. Someday we hope to be able to say "wow do you remember when..." and in a way it's a blessing that both girls are young enough that they probably won't remember a single bit of this...

Not sharing this out of a need for sympathy or anything; just wanted to put words to what we've accomplished over the last year. This is the kind of thing that you can't plan for, can't prepare for, and until it happens you don't know if you can handle it... but part of being a parent is that when it *does* happen, somehow, you just do.

Here's to the next 12-months going "up and to the right".

Maddie's Surgery

Short version: 

Maddie is good. Surgery went exactly according to plan, and she is mostly sleeping as she recovers. Tomorrow we should learn all about the tube; no word yet when we might go home.

Longer version:

Long, stressful day… but hopefully this is a turning point for Maddie and it's all growth from here.

We had to get to Wake Med by 5:30am, and Maddie couldn't eat after midnight… we were pretty worried about how she would handle that, since she's still eating every 3-4 hours (yes, even at night) but luckily she was awake and fussy all night Sunday until her 11:30pm feeding, after which she passed out hard… she slept pretty much the whole time until she went into the OR at 7:30am.

Watching them wheel her into the OR was one of those moments you don't forget.

With 2 hours to pass, we went to the cafeteria to get some breakfast. Don't think I really tasted anything I ate... 

About 70 minutes into the surgery they paged me and I was told to pick up a phone… Was not expecting any updates until the end, so alarms were going off in my head -- I'm pretty sure I didn't breathe until I heard the update: the surgeon just wanted us to know that things were going well… asked the nurse to call us from the OR. Whew. 

The surgery was supposed to take ~2 hours. About 2:20 after we left Maddie, we finally saw the surgeon walk out into the waiting room -- incredibly relieved to see that he was smiling broadly as he looked for us. He gave us some pictures from the laparoscopic camera; It seemed like he enjoyed showing off his handiwork. It also added to the feeling of just how amazing these surgeries really are… especially when you remember that this is a tiny tiny baby. Those photos definitely have to make the baby book. ;)

Another 30 minutes or so later, we were taken to the post-anesthesia recovery unit and finally got to see Maddie. Tubes and wires notwithstanding, was sooooo good to hold her again! She noticeable calmed down as soon as she was passed from nurse to Mommy. In this room they were weaning her off the general anesthesia and onto pain medication. She was grumpy and tired with a very hoarse throat; understandable of course. We're not allowed to give her any food or water yet, though… just "eating" off the IV for today. 

Turns out Maddie does not respond well to the narcotic pain meds they tried; it was tricky finding the balance of enough pain suppression but not so much that  her breathing was unaffected. Couple of hours of alternating between oxygen and room air until she got off the narcotic and seemed OK with just tylenol. 

Finally got to our recovery room around 1:30pm, and it's the exact same room we were in for two weeks back in July. (Funny, eh? I'm putting it down as a good sign.)

Since then, Maddie has basically been sleeping… just waking up intermittently to cry out once or twice (usually) especially when her pain meds are low. They tried some morphine around 3pm; but she's had a bad reaction to that as well -- so for the last hour the alarms have been going off every few minutes as she temporarily slows her heart and breathing… but she snaps out of it quickly every time, so the docs are not worried. They'll be avoiding morphine from here on out though. (Alarm just went off again…)

Melissa is finally getting a deserved nap, and to be honest there's very little we can do here -- Maddie has woken up a few times enough to see us and we got a little smile out of her… but primarily we just need to let her sleep and heal. Tomorrow we start the work of g-tube feeding, which will be with us for the next few months at least.

That's about all I know… hope all are well, and thanks for all the support!


Update: Someone pointed out that I never said what the surgery actually was. She had a laparoscopic Nissen Fundoplication and G-tube placement.

Basically, we've been struggling with her weight since shortly after birth... she's well below the one-percentile in weight, and after months of trying to get her back up with other methods, it was time to go with something a bit more drastic. So this surgery should keep her from her bad spit-ups, which should generally improve her quality of life, and gives us the ability to push extra calories right into the stomach and also vent her stomach gas (she tends to swallow air and is a bad burper). The venting and the cessation of bad spits could help her learn to eat more and more, as well.

New chapter - take 1

First road warrior trip back to Colorado. Yippee! 

Of course today brings back all the repressed memories of just how much of a hassle (time-suck, mainly) air travel brings... it’s a system optimized entirely around cost efficiency for the airlines -- not for travelers. 

Getting your checked luggage, for example: a bunch of presumably busy people standing around for 20-30 minutes to self-select bags from a slow belt? There surely must be a better way. 

How about something like this: each bag is scanned and deposited into a locker. You get a text when yours is there, with the locker number. You walk up (from getting a drink, or otherwise being useful) and your ticket unlocks the locker and you leave. Bam -- thousands of wasted traveler hours just got saved. Someone build this, m’kay?

I remember now: typing on a plane -- kinda sucks, even with the MB Air. Someday when I’m a billionaire I’ll ride first class just to avoid that. Oh, and the kids kicking the back of your seat too... worth paying good money to be away from that.

The connection in Atlanta completely borked my day. Lessons:

• nonstop only (as much as possible)
• no scheduling meetings within 2 hours of touchdown, just in case
• the bus is nice and cheap(ish), but adds a time delay... Note to self: check out RTD park-n-ride in Table Mesa?

I’m on the bus now as I type this. (Literally.) It’s a good bus system; we’ll see after a couple of trips how much overall time waste it adds to my work day, and weigh that against the costs of using some kind of parking here at DEN. Turns out that the seats on the bus are just as tight front-to-back as economy class on the plane. Well, when I’m rich enough to fly first class I guess the bus goes away as well... covered remote parking here I come!

In any case, it feels good to be back in Colorado. I’ve missed my startup. 

Ah... we just came around a bend and there is what I’ve been looking for -- that mountain view doesn’t ever get old. Even with the clouds (smoke?) it gives me that warm, happy feeling in my tummy.

I think I can get good at this bi-coastal thing. Only one way to find out...

Raleigh - New House, New Chapter

As of today, I consider us to have fulfilled the first phase of "settling in" to our new (to us) house in Raleigh.

There are still boxes everywhere, the fridge is frighteningly empty, we don't know where most important sellers-of-things are nearby, the TV is on the floor, and Sydney has yet to make it through a night without waking up crying all disoriented... but it's feeling comfortable nonetheless.

Turns out here are the things (in priority order) that are sufficient to make a place feel like home:

* Two corners of the house utterly devoid of boxes and fully livable

* Broadband wireless internet

* Fridge serving clean water and ice
* Knowing the location of some extra socks, underwear, and t-shirts

* Ample supply of a few favorite food and beverage items

* Towels and a hot shower

That's it really. Life is pretty simple when you boil it down to the basics.

And really #2 is the thing that has finally allowed me to relax... having internet (for real; not counting mooching off of neighbors with a spotty signal) is the lynchpin. I don't need to be plugged in 24-7 (no, really!) but I need that ability... I love being able to hop online and catch up on work email, order that pizza, figure out where to go for takeout food... my stress level dropped several notches when I finally saw that little green light up and was able to paint the place with glorious glorious bandwidth.

Data is almost as important as oxygen these days, it seems; without proper internet I was imagining my phone slowly sipping away at my limited data plan... feeling the emails pile up that I just couldn't quite handle effectively on a phone... just like having a fridge dispensing unlimited clean water lets you utterly forget about your need for water; having the wifi working lets you stop worrying about whether you'll be able to handle whatever it is that is about to jump up and demand your attention.

Interesting world we live in.

(Oh, and for those that are confused by the title -- yes, we did just move back to Raleigh, NC. Got a house next to my sister Jenny and pretty soon I'll start commuting out to Boulder to continue building my business. Great to be near family again! Eventually, though, they all clearly need to move out to Colorado with us. Some day.)