Friday, July 30, 2010

Back to the Hospital!

Yes, I am trying to use that title as much as possible. Seems it's a theme these days.

While I was checking the volume of water in Becca's mic-key button balloon (which holds it in), she squirmed at just the wrong time, and the button popped out. Eventually, I'll be able to pop it back in myself, but while it's so new, the surgeons have to do it. Which, since it's Friday night, means a trip back to the ED for me and Itty. (SuperDad is still at camp. He misses all the fun.)

Hopefully we'll be out of here in a little while. If you don't hear otherwise, assume all is well. Whenever we get home, I'll probably choose sleep over posting. Or maybe a shower, since I'm still covered in camp gunk. Ew.

Thursday, July 29, 2010

"Wednesday" Weigh-in

Okay, there's nothing Wednesday about this post, since we weighed on Tuesday, and I'm posting on Thursday, but too bad. I like alliteration. We're at camp this week (more on that later - awesome pictures included!), hence the odd schedule. Anyway...

Last week: 7.9 kg (17 pounds, 6 ounces), 28.5 inches
This week: 8.05 kg (17 pounds, 11 ounces), 29 inches

Week's change: +150 grams/5 ounces, + 0.5 inches (Keep in mind, length is pretty hard to measure accurately. She probably didn't grow half an inch in just one week (may have been some growth before), but she's definitely looking a little taller.)
Net change: +350 grams/12 ounces, + 0.5 inches

Yes, friends, she's gained nearly her birthweight in less than 2 weeks. Love that tube!

Tuesday, July 27, 2010

Hospital Fun

Our time at Vanderbilt Children's Hospital recently wasn't all gloom and doom. Becca manages to have fun everywhere she goes, whether it's...

exploring underneath the hospital crib....

having a bath in the sink...

making the rounds, waving like a princess from my wagon chariot...

getting tucked into bed with all of my friends...

being adorable with Mommy in my 4th of July dress...

playing with my borrowed naked baby...

(thus started our obsession with "ba-bie")

hanging out with my buddy Daxton...

(Seriously, could he be any more handsome?)

meeting a baby with a mic-key button just like mine...

(Sorry, not the best picture, but here's what the button looks like up close.)

snuggling on the bed with Daddy after surgery...

or, our favorite, playing on the dragon playground on the 6th floor!

Riding the dragon!

(Playing our favorite new game, "I see," as in, "I see Becca!")

(Itsy Bitsy Spider with Daddy..."out came the sun...")

It's a lovely day when you're with Be-ecca!

Saturday, July 24, 2010

Aaaaaaaaand, We're Back!

After a very uneventful trip to the ED and a very frustrating 90 minutes at the pharmacy, we are home in one piece (well, two pieces since Becca and I both went). It looks like she's developing an infection around her g-tube site, which we are now treating with oral antibiotics. And I use the term "oral" loosely. Apparently this drug is pretty darn gross, so we'll just skip the oral part and shoot it down her tube. There's the upside of the tube!

And swimming is still allowed! :)

Back to the Hospital...Again...

We're heading in to Vandy for Becca's first-ever ER visit. Nothing too scary, but the doc on call thinks we need to have a pediatric surgeon look at her g-tube site, which is not looking too pretty...possible infection. I'll try to keep you posted, but we're not too worried.

Friday, July 23, 2010

An Appointment a Day Keeps the Doctor Away?

Oh wait.  That doesn't work.  But we tried it this week.

Monday: First visit to WAVES.  See two posts ago for more details.  Definitely a fun, fun appointment.

Tuesday: Endocrinology.  Regularly scheduled, also turned into hospital follow up.  See detailed description below.

Wednesday: Physical therapy with Ms. Ashley at 100 Oaks.  I may have said this before, but Ms. Ashley is wonderful, though she is definitely no Ms. Jane, but the facility is a magical playland.  I want to have my birthday party there.  Zip line, foam pit kind of thing, a track around the room for riding toys, a mini basketball court, and fancy stairs with - how to explain this? - colored water in the walking surface that moves around when you step (make any sense?).  Becca had a hard time focusing on the task at hand (whatever the task was at the moment), but, frankly, so did I.  So fun.  Now that Itty is walking, we are working on stooping to pick up a toy and learning to use our feet (to kick, etc.).  It involves putting stickers on the tops of her shoes and kicking beach balls.  PT is fun.  (And this makes me feel better about spending Becca's gymnastics money on repairing the leaking water main.  Homeownership is not fun these days.)

[Just for the record, I am ignoring my daughter, who is standing at the back door (I am on the deck) screaming, "Mama! Mama!  Mama!  Mama!"  I wonder how long it will take until it bothers John, and he rescues her.  (He is "primary parenting" right now, as I like to call it.  Thank God for Fridays.)]

Thursday:  Occupational therapy evaluation.  Good eval; still looking at weekly therapy whenever a spot opens up.  Fine motor still looks good, but we'll work on sensory issues and some related feeding issues.  (OT is the primary discipline for working with sensory integration, the kind of therapy required for kids with sensory processing disorder, or "SPD.")  I'm still crossing my fingers that Karla will miraculously decide to transfer over to Vandy, but for now, I'm waiting for a call.  For sanity's sake, I might hold out for a slot that piggybacks on PT.  Therapy exhaustion is a very real issue, and not just for the kids.  There's only so much back and forth and home therapy exercises you can do before you all burn-out.  But hopefully that will open up soon.

Friday:  Feeding therapy, first session.  Again, no Ms. Caroline or Ms. Roxi, but I think Melissa will work well with Becca.  She did convince her to lick a piece of peach drenched in syrup, so that was progress.  We'll do 20 sessions once a week, which is down from the 2 per week we were doing, due to availability - as in, we are only able to get into therapy because being inpatient for so long (and having a fabulous inpatient therapist) bumped us up - not even kidding - 40 spots on the waiting list.  Wow.  Again, I say: pediatric feeding therapists, get thee to Nashville!  We need you (and your GI buddies).

Okay, now back to endocrine.  The good news is that we don't have to test her blood sugar anymore, unless we see something suspicious.  But the bulk of the appointment was spent talking about growth (our regularly scheduled programming, right?).  Now that she is two, beginning therapy with growth hormone is an option.  Once we begin therapy, we will continue it until her growth plates close around age 14.  (Yes, that's 12 years.)  After reading Becca's "bone age test," which is just an x-ray of her wrist, looking at whether her growth plates are closing more or less quickly than average (they aren't), Dr. Lomenick's best (highly) educated guess is that her full adult height, without the help of growth hormone therapy, is around 4 feet, 7 inches.  Yikes.  (Note to anyone reading who may be 4'7" or shorter: I am not saying there is anything wrong with being of very small stature.  But I would like to spare Becca some challenges in life, since she's faced more than just about any of the rest of us in her 2+ years.  My guess is that you would agree.  And I'd love to her your input either way.)

To clarify: Becca's body does produce growth hormone effectively, but it likely doesn't use it efficiently, and even if it did, she had such a disadvantage at birth (you know, being 9.5 inches, stretched out head-toe), that she needs extra hormone to help her reach a more manageable adult height (hopefully somewhere around 5' - 5' 2").

John and I have decided that, assuming our insurance will cover it (according to the docs, they have never had a company deny it when it is specifically for kids who were small for gestational age at birth - but I'll believe it when I see it!), we are going to begin therapy right away.  We'll have to give her daily subcutaneous injections.  (Subcutaneous means "under the skin;" they aren't injected directly into a muscle, like many vaccines are).  "SubQ" injections, like the ones I gave myself while I was pregnant, are less painful, though they are still no picnic.

We could have decided to wait a couple of years to begin so that Becca would be better able to understand why we were giving her all of these shots, but there are several reasons we want to go ahead and get the show on the road.  The most important is that the longer you give the shots, they more effect they have.  (Makes sense, right?)  If we're going to do this thing, let's do it.  Kind of how we approach much of life.  This way we'll also see faster results (again, makes sense).  After seeing her at school on Monday, so so so so much smaller than her peers, we agreed that it would be good to at least help her a little before kindergarten.  Dr. Lomenick thinks that if we start now, she might at least be near the bottom of the growth curve by the time she is 5 or 6.  (By the way, she is still hanging out 6 inches below the 3rd percentile.  I'm serious when I say she's not on the charts.)  And finally, if we start now, she'll be used to getting the shots.  She won't like them, I'm sure, but she is a tough kid who gets accustomed to doing difficult things, so I think it's wise to go ahead and use that adaptability to her advantage, rather than waiting until she is a more inflexible 4 or 5 year old (when changes or unpleasant experiences tend to be more difficult to introduce).

As Dr. Lomenick said, though, the question was really about when to begin treatment...because the question of whether or not to treat her, when we have a therapy that is safe and effective, and at least attempting to help her grow taller than 4' 7", is really a "no-brainer."  (Seriously, his words.  Very rarely are doctors so forward in sharing their opinions on such matters.)  And he's right.  I hate the idea of giving her shots, but I know we can do it, and when you start thinking about independent living at 4'7", it gets difficult.  Not impossible, of course, and I have no doubt that Becca could manage just fine, thank you, but that's a lot of adapting.  For example, imagine someone the height of an average 9 1/2-year-old girl (pre-growth spurt) trying to see over the steering wheel when driving.  That's tough.  So we're going for it.  We should hear back from their office with clearance from insurance by next Wednesday.  And we had better have clearance from insurance...because growth hormones are very expensive, especially 12 years' worth.

Next week, miracle of miracles (okay, not really - it was just a lot of rescheduling on my part), we have no appointments, because we will (probably) be going to camp!  John is definitely going to lead a week at Aldersgate Camp (his old church camp and his favorite place in the world), and I'm hoping that Becca and I will get to join him for a few days, God willing and the creek (aka the bog from the leaking water main) don't rise - and the plumbers cooperate.

That's all well and good, but I'm pretty sure 90% of you are here for the pictures.  How about this gem for today, then?
Mommy and Becca, mid-silliness

Thursday, July 22, 2010

Wednesday Weigh-In

Okay, so it's Thursday, but we weighed on Wednesday, as will be our ritual.

Last week (on Friday): 7.7 kg (16 pounds, 15 ounces), 28.5 inches
This week: 7.9 kg (17 pounds, 6 ounces), 28.5 inches

Week's change: +200 grams/7 ounces, -/+ 0 inches
Net change: +200 grams/7 ounces (We'll use the 7.7 kg as our baseline, since that was the first measure on the scale that we will be using consistently.), -/+ 0 inches

Pretty darn good!  She's looking pudgy!

Monday, July 19, 2010


11 days post-op, and we're still doing fine. I can't think coherently at the moment, so I'll just throw some words up here and see what sticks. Like pasta on the kitchen cabinet.

Becca's tummy is healing up well. Her bellybutton incision is looking good (though still red, but John and the pediatrician swear it's fine), and her tube is doing fine. It's still oozey, but from what I hear, it might be that way for a while. That's good, because gastric juices are fun. At least it's one bodily fluid that doesn't stink. Toddlers are stinky. Seriously stinky. Poop, pee, milk, juice, sweat, dirt, smelly feet....stinky kids.

We followed up with the (new) pediatrician on Friday. Dr. Rawls. He's kind of adorable. Like I kind of want to bring him home and keep him around because he's cute and sweet and adorable. But then he'd probably want to bring his own 2-year-old with him, and our house can only handle the stink of one toddler (see above).

Also in the fun, new category: Becca's school. The really exciting option for which TEIS would pay for two 5-hour days (High Hopes inclusive preschool) has yet to work out. As in, there are 3 kids ahead of her on the waiting list...which is not what I was led to believe initially. Crush my dreams already, will you? BUT - option b will still be good for her. Option b = WAVES (which I think stands for something, but I don't know what). She'll attend the WAVES early learning classroom (10 2-year-olds, 4 developmentally delayed (like B) and 6 typically developing) for two hours a week. Yeah, two is way less than ten. Especially when the school is 25 minutes away. But two is more than zero, and she's going to love it. And they are fabulous. We visited today and Becca had a great time, even going "owside" on the playground with the class. (By the way, "owside" = paradise to Becca, even though it's hot as Hades these days.) Every day, they work on some kind of sensory issues (today it was getting paint on your hands and doing handprints) and practice using an open cup during snack time. If I can get them to potty train her, I can retire. Of note: Becca is tiny. It was crazy to see her in a room full of kids her age. Granted, she's on the young end of two, but, wowzers, Itty Bitty is seriously itty bitty. Crazy to see it so obviously. She didn't mind though; as Miss Lola said, "I think she'll hold her own." Understatement? Mwahahahahahahahaha....Becca's taking over the classroom. I think the word "gregarious" might have been used. Or maybe that was at church. At any rate, I don't know where she gets it. John and I are so antisocial. (Demystifying John Hill lesson #45763: yes, he's on the quiet side, but he's extremely long as someone else makes the plan.)

But the really exciting development in our house is the addition of new the form of fish. Last Thursday, Becca and I went to PetSmart and picked out two male gouramis and one male and one female dalmatian mollies. I thought it would be fun to have fish babies down the line. Little did I know that Ms. Perdita was already knocked up. On Saturday when I went to bed, we had 4 fish; on Sunday morning we had 11...then 12...and then today, we discovered another baby, for a grand total of 13 fish: 4 adults, 9 baby mollies. On Sunday afternoon, I drove the 6 minutes to PetSmart again (seriously, 6 minutes! Wahoo!) and bought a little floating baby fish net/cage thing to keep Pongo, Perdita, and the as yet unnamed gouramis from eating Freckles, Thunder, Lucky, Patch, Rolly, Cadpig, Pepper, Penny, and/or Two-Tone. (Big thanks to cousin Jessica for the exhaustive list of named Disney dalmatians.) Becca hasn't noticed the babies yet, but she loves watching her "ish!" (always with an exclamation mark). I'm trying to figure out the best way to give her some extra inches without tumbling to her death while ish-watching. Still, very, very fun. I promise I WILL post pictures...just like I still promise that I'll post about everything else...someday...maybe for 2 hours on Monday mornings...with a chocolate butterfly at Meridee's...yum. (Did I mention that Becca's school shares a parking lot with Meridee's Breadbasket...which is, to put it mildly, heaven...and even more special because I used to hang out in the owners' house and eat their fresh bread, sweets, homemade pastas babysit for the owner's kids. And the kids were pretty sweet, too.

I can't stand it any longer. I've got to go watch the season premiere of Psych. Man, I love USA and their USA network original series. And I probably need some ice cream. Probably. Definitely.

Tuesday, July 13, 2010

Family Re-Union Video

Remember that conference John and I keynoted at Vanderbilt a few weeks ago? They've posted the video of our speech! Visit this site and click on "Keynote." The first 6:30 is the CEO of Vanderbilt Children's Hospital sharing some thoughts and introducing us. He also sang "Happy Birthday" to Becca. Very sweet. John and I speak for about 26 minutes before taking questions from the audience. Lots of the information will be familiar to you guys, but it gives a nice recap of Becca's story and our journey. You may need to grab some tissues, but enjoy!

Monday, July 12, 2010

Life at a Mommy Pace

We've had a good few days at home. Still no problems with the tube feedings or the pump, though checking Becca's blood sugar is pretty rough. John has quit. He's done with poking and torturing. There's just nothing like pinning down your child and making them bleed to strengthen the parent-child bond. They've all been normal since we've been home, but since a few of them have been on the low side of normal, I'm sticking it out (pun intended) and keeping up with them at least a couple of times a day. We see the endocrinologist next Tuesday, so we're supposed to do another full week of them. She did throw up at lunch today, which was disheartening (not to mention disgusting). I thought we have moved past that. I'm really over cleaning up vomit. To complicate the issue, Becca's not supposed to take a real bath until the end of this week. I figured a little water wouldn't be as bad as crusted puke, though, so I let her splash in about an inch of water while I wiped her down. She was a happy, happy girl.

I did have a bit of a mommy revelation today, though. But first: a confession.

I have issues.

News to you, I know. Ha. Let's face it; they are myriad, but let's focus on one tonight. I feel the need to justify my existence and, more specifically, to justify the use of my time. I feel guilty if I can't prove that I have been productive each day. Blame it on the Protestant work ethic coupled with some good old Southern girl guilt or on the uber-high parental expectations I had growing up (yeah, I'm talking about you mom and dad - you know it!) or both, but I feel like I have wasted the universe's space and time if I can't show you that my day was worth it.

And I don't think I'm alone here. My guess is that there are lots of moms (and lots of pastors, incidentally) that secretly or not so secretly, consciously or unconsciously think and feel the same way. Think about it and give me an "AMEN" if you are out there lurking.

Theologically, I know this is a big, nasty lie. I know that I am a child of God, unconditionally loved and cherished. And I know that I'm really not important enough for "the universe" to be concerned with whether my little plot of earthly resources is well-spent. But despite two degrees in theology and a whole darn lot of therapy, I can't shake the feeling, the terror, that I am not good enough, that I have not done enough.

So, I roll with it. And I find ways to convince myself that I am okay, even though I secretly (or, as I said, not so secretly) know that if I'm okay, it has nothing to do with what I've done with my 16 waking hours. But I sleep better at night if I can play my little games, which translates into accomplishing a lot. Enough, that is.

The problem is, as a mom, you can never do enough. There is always more to do for your children, your spouse, your house, your community, the world. (And yes, saving the world is my job, after all.) I suspect the same is true for dads, too, but never having been a dad, I can't speak to that one. I felt this way as a pastor as well, but now that I'm a mom it's like the pastor guilt times a million. There's a good chance that part of the weight I feel has to do with my ambivalence regarding Becca's entre into the world and my (body's) role in her rough start, but let's face it: I'd probably feel the same way anyway. I do have issues, you know.

Since I've left the (paid) working world, this feeling has gotten even more out of hand because there is often very little to show for my time and energy at the end of the day, not even a paycheck. (Especially not a paycheck?). Yes, there is a child well-fed (or whom I've attempted to feed well), cared for, loved, played with, read to, snuggled, tickled, and tortured (with glucose meters, g-tube cleanings, and the extrication of my glasses (her favorite "toy") from her smudgey little hands), but as glorious and beatific as that tiny little tippy-nosed face is, I know that it will all need to be done again tomorrow. Even if I do get around to cleaning the house or cooking dinner, again, it will all need to be repeated tomorrow (or 5 minutes after said cleaning). The dogs will again bark and beg for food in the morning. Nothing is ever finished. Sure, I do plenty, but nothing is ever done. As much as I love and adore being a mother (wouldn't trade it for anything...absolutely anything), this dynamic + my issues = fairly incompatible. (After all, we're all looking for "baggage that goes with mine," right? Yep, name that musical!)

But, like I said, I roll with it, and recently I began rolling with it by making lists. No, not lists of things that I need to do (been making those for a while), but of the things I've done. It's all about alleviating (perceived) guilt and justifying my lack of income to my dear husband, who, by the way, asks for no such justification. See above, under "issues." At the end of the day, when I'm exhausted and not sure why, I can look back over my list and pack myself on the back, knowing that (most days) I have done something. Ergo, I am okay. (Again, see "issues," above.)

And that brings me to today.

Becca slept until a little after 8, for which I am ever so grateful. (Prior to our hospital stay, she regularly slept until 8. I was afraid that the two weeks of waking at 5:30 had broken her of her routine. We'll see how tomorrow goes!) I didn't really get down to the business of the day until 9, but between 9 and 12:30, I went hog wild. I:
  • checked Becca's blood sugar (80 - just over our minimum of 70);
  • gave her breakfast (no small feat, though it be a very small feast);
  • left a message for the Williamson County Children's Special Services lady (transferring and recertifying Becca's case);
  • call the pre-school I was hoping to get Becca into twice (bad news: 3 kids ahead of her on the waiting list, could be a year!);
  • called our new TEIS service coordinator and scheduled her visit (Thursday at 11);
  • talked to our new physical therapist and rearranged a couple of weeks' appointments;
  • left a message at our new pediatrician's office and eventually talked to a nurse (suggested that I call the surgeon's office to see if Becca needed to be seen for a fever of 100.6 since we are 4 days post-op) and scheduled Becca's hospital follow-up appointment (for Friday);
  • called the NICU follow-up clinic twice to reschedule an appointment
  • called Loew's Vanderbilt Plaza twice to check on a charge on our credit card for the night we stayed there as part of the prematurity conference a few weeks ago (for which Vandy was footing the bill);
  • called the surgery clinic twice (where the nurse decided that we are probably safe not bringing her in unless she shows additional symptoms);
  • talked to Nana Dana to give her an update her girl;
  • unpacked 3 boxes in Becca's room;
  • began reorganizing her closet and dresser; and
  • hung artwork in Becca's room,
all while playing with, entertaining, distracting, coloring with, and snuggling my sweet (and mischievous) small child. (Without utilizing the TV, other than 20 minutes of Elmo's World, I might add.)

12:30 rolled around, and I started the lunch-nap routine, which was so disgustingly interrupted by massive amounts of vomiting (a "large emesis," they would have called it in the hospital) and the subsequent bathing, laundering, and kitchen-cleaning (including disassembling the dishwasher in order to wash her booster seat) that ensued.

By the time the clock struck 3, Becca was sleeping, and I was starving, grossed-out, and exhausted. Like, stick a fork in me. And I couldn't figure out why. So I made my list. And then I was even more tired. I slapped together a PB&J, called it lunch, and killed brain cells reading coupon match-ups and watching TLC. There was no way I was getting back to my other list - the to be done list - because I was spent.

I looked at my list again and though, "Duh. Of course you're worn out. In addition to your basic mothering tasks, you did about a million things already." The problem is that they are things that don't look or feel like things. I mean, I hadn't left the house or even showered! It's just the stuff that I had to do to make all the other days work out. And I'm not thinking in terms of oh-my-life-with-a-special-needs-child-is-so-hard; for the most part, if it weren't those calls I had to make, it would probably be other mom-related calls: to preschools, mother's groups, bible studies, moms of playmates, etc. Maybe it would have been a few less, but it would have been something.

So I guess the revelation is this: those ancillary parenting tasks - the ones that nobody else probably realizes you do and the ones that don't even make it to the to-do list because they make the to-do's possible in the first place - those tasks ARE something. They are work. They are tedious, but they have to get done. Yeah, it may look like sitting (ha! try chasing a toddler around a not really child-proofed house!) on the phone in my p.j.'s is an easy life, but it's not. It's work. It's part of the best job that I've ever had, the job that I would never, ever unchoose, but as with any job, it's work. And when you have a lot of work to you, you've got to pace yourself. Sure, you could go all out and never take a breath for 3 hours, but the other 5 (or so) hours of your workday aren't going to be nearly as productive. Motherhood is a marathon, and while I won't call every day a marathon in its own right, it's at least a 5 or 10k, and I don't know about you, but that's certainly not a sprint for me.

Speaking of sprints, I'm pretty sure there was a way to make this post much shorter. Alas, I can't even abbreviate my thoughts tonight. I apologize. But if you have any energy left, I'd love to hear your thoughts, whether you are a mom or not. How do you pace yourself throughout the day? When is enough enough? How do you balance your working with your being?

But now it's time to clear my dry erase board and start on tomorrow's list. Again.

Sunday, July 11, 2010

Home Again!

We got home yesterday around 3 and had a good night last night - no problems with the pump, tube, or anything! The doctors still don't have a great explanation for the low blood sugar, but they sent us home with a glucose meter so that we can check her levels 3-4 times a day. Lots of needle pokes, but she's a tough kid, I guess. We go back to endocrine on the 20th, so they will evaluate the log of her sugars and see what we need to do. Chances are, it was just that she had so little reserves that after going 2 days without any food, her body just wasn't getting what it needed from the IV fluids. Hopefully next time we have to go that long, the doctors will be willing to give her TPN (total parenteral nutrition, which goes through an IV, like what she had in the NICU when she wasn't on full feeds) so that she'll be able to regulate things better.

Thanks for all the kind thoughts, prayers, visits, gifts, and encouragement these past 2 weeks! It wasn't the best 2 weeks of our lives, but I'm feeling good about everything that came of it - and about being home in "new house!"

Saturday, July 10, 2010

Almost Home?

Surgery has removed the sutures and signed off on our going home! No baths or swimming for a week (from Thursday), but she's already back to eating her Cheerios! We're waiting for the GI team to round and to hear from endocrine. I want to know what's going on with her blood sugar before we go, but I think that's it, apart from packing up the ridiculous amount of stuff (or "plunder," as my mom would say) we've accumulated over the past two weeks. I see several trips to the car in our future.

Remember when I mentioned Becca's big playdate with Ms. Melissa a few days ago?

They had so much fun - I think they visited the trains, the fish, the dragon playground and 2 playrooms AND they went to medical play with the folks from child life (where the kids get to play doctor to teddy bears and dolls - so cute). What a big morning! It was such a nice break for me, even though I spent the morning sitting in the room waiting for the doctors who never came. I was so frustrated that morning, so it was a really good thing Becca had a much more cheerful friend to play with. They played so hard, in fact, that this is what Becca looked like by the end of her lunch (and beginning of her naptime!):

Thanks again, Melissa! You are awesome!

Friday, July 9, 2010

Gimme Some Sugar!

We've had some complications. Not major, but as yet unexplained.

Last night, as I was putting Becca to bed (and while the nurse was flushing her IV's, etc.), she starting making weird hiccuping noises and breathing funny. Then she went limp and was unresponsive for about 5 minutes. Once she began responding, she kept breathing and acting funny for another 5-10 minutes. In the middle of the "episode," which was either a fainting spell or a seizure (and the doctors have been tending to use the word "seizure"), the charge nurse thought to take her blood sugar, and it was 40, which is pretty darn low. (60-120 is considered normal.) Not like lethal low or anything, but low. Once she had recovered, it had bounced up a bit to 44. The doctors (finally - they got there probably 20 minutes after the whole thing was over because of pager issues) ordered a bolus of sugar water (my kind of medicine!), and an hour after that was given, her sugar was up to 119 or so. They also doubled the concentration of sugar in her IV fluids for the duration of her time on them.

She was fine the rest of the night, but then this afternoon, when John noticed we had some extra blood from a draw the nurse was doing for endocrine tests, he suggested we use it to test her levels again, even though she wasn't showing symptoms, and they were back down to 50. Smart daddy. Repeat the bolus of sugar water, test again, fine.

The obvious reason for the blood sugar issues is that she hasn't had anything to eat since 7:00 on Wednesday night. However, the IV fluids they were giving her should have been enough to keep her levels healthy - even more so after they had bumped her up to the D-10 fluids (double sugar). There's definitely some kind of endocrine issue going on.

Our thought is that it's the return of an issue she's had in the past. Up until a few months ago, the doctors suspected that Becca had an adrenal insufficiency (which would not be surprising, given her septo-optic dysplasia, which can manifest in endocrine issues). hey thought that her body didn't produce enough cortisol. Any time she was experiencing "bodily stress," like when she was sick or having surgery, we treated her with "stress doses" of hydrocortisone. In her most recent tests, though, she wasn't showing signs of the insufficiency, so we discontinued the prescription (which we only used a couple of times, but definitely around her last surgery). Perhaps, though, this surgery was enough to bump her little system into disarray, which could make her blood sugar wonky.

That's the leading theory at the moment. They repeated the same cortisol stress test today that they have used all along to consider the insufficiency. We haven't heard results yet, but that would be the easiest explanation; we'd just have to go back to keeping the hydrocortisone pills on hand. But who knows - it could be something completely different. We're not comfortable going home until we know what the issue is, so hopefully the endocrinologists will have some answers for us tomorrow, so we can get the heck out of this place.

And that is the plan - for us to go home tomorrow. Becca's been getting Pedialyte through her tube since this afternoon, and in 45 minutes, they are actually going to start giving her some formula. Wohoo! If she tolerates that well, she can start eating regular food tomorrow morning. For a kid who doesn't like to eat, she sure has missed food these past couple of days! If we leave the cabinet with the fridge open (yes, the mini fridge in is a cabinet here, like some swank hotel mini bar), she makes a beeline for it. I think she's after the Kool Aid inside it. (I think we have a new favorite summer drink!) My guess is that once she is back real food, her sugars will level out, but we still need to know what happened so that we can prevent it from happening again. In the meantime, they are keeping her little feet bleeding with all the toe and heel pricks for the glucose meter! She's also had bad luck with her IV's the past couple of days, so she's been poked an awful lot - 3 new IV's in the past 48 hours, plus a few more earlier in the week. :( Nana Dana invested well in the box of Elmo band-aids she bought her for her birthday!

I also made my way down to Patient Affairs this afternoon. I spent about an hour talking with a patient advocate, and I feel confident that my suggestions regarding communication with be passed on to the team. I'll spare you any more gory details, but we had a few more issues today and yesterday, one of which made me really quite mad. I know everyone is new, but they really have some lessons to learn about communicating with parents, with each other, and among the various teams (GI, surgery, etc) taking care of my girl. The patient advocate was really helpful and I really think she will help them understand the issues within a framework of constructive criticism. Yeah, I am still kind of mad at some members of the team, but, really, my motivation behind talking to Patient Affairs was to help them learn -- that is what they are here for, after all -- and to spare other families some of the unnecessary stress we've experienced these past two weeks. And it didn't hurt that they had Becca's magazine sitting out in their office. They are kind of big fans. ;)

Thursday, July 8, 2010


About 30 minutes after I went back to bed, John called and said that they moved the surgery back up. I scurried to the hospital just in time to wait another hour. Ah, hospitals and choir tours: hurry up and wait. But it wasn't unpleasant AND and GI attending and fellow came by. Squeaky wheel and all, I guess. We also talked to all the relevant docs, nurses, etc. I kissed her intact belly one last time, and we watched as the took her back around 10:00.

In the waiting area, we found a couple from the new church (the minister of discipleship or something or other related to education and his wife), and we had a nice conversation with them...and it turns out that, as Baptists (now Methodists) in Winston-Salem, they knew my Granddaddy Ludlum and Grandma Charlotte really well. How cool is that?! They have promised to tell us some stories about them, especially my granddad since he died when I was 8. Very exciting! AND they have promised to bring us Moravian Sugar Cake when they visit family. Oh my my my. If I didn't like them already, that would have sealed the deal.

After they left, we got back to the business of waiting, and after about an hour (total), we were called to a consult room to talk to the surgeon, Dr. Chung. He said that everything went well, and he was able to go straight to the Mic-Key button, which keeps us from having to deal with a more cumbersome tube in the initial period and having to come back in a few weeks to have the button put in. We were really happy about that.

After waiting a bit more, they called us back to see her, and she wasn't screaming bloody murder like she normally does post-anesthesia. Apparently she was beginning to before we got back there, so they gave her some more pain meds to put her back to sleep. Ah, Becca. She was snuggly and groggy and didn't like to be moved. In addition to the IV the put in her arm last night, they had given her an IV in her leg (so she won't be able to walk until that is out), and she's got a tube attached to her button that is draining into a little cup, which is disgusting...blood and gastric juices...yum. But that's just on for about a day. The button is actually stitched to her tummy for now. She can't eat or drink anything (through the tube or orally) for 24 hours, and then they will start feeds through the tube very slowly to make sure nothing's leaking or causing her pain. After 48 hours, they'll take out the sutures, and, if the feeds are going well, we'll be free to go home. That puts us here until at least Saturday.

Once we got back up our room, she and I settled into my bed to snuggle and take a gooood nap. It was lovely. Now that we are awake, she's much more herself. She's not down and crawling around or anything, but she's cuddling with Daddy on the bed and waving and talking a little bit. I knew she was coming out of it when she waved hello to her favorite bear. So social.

Since we are going to be here longer than expected, John has decided NOT to go to MAP tomorrow. That's sad. We love MAP (it's the mission project at our church in Atlanta that John helped to run for several years), and I was sad that Becca and I were going to miss it, but since John was to be in charge of a worksite (master roofer that he is), he was going to go on...but this afternoon, he decided that he couldn't leave his little girl right after surgery. (He was supposed to leave tomorrow morning.) So, sorry Northside folks, you're down one leader...but Becca will sure be glad to have her "Dada" around this week (and so will I!). It sounded like they will be okay, though. John's also scheduled to lead a week at Aldersgate Camp at the end of the month, so staying home this week will also give him a chance to get settled in at work. I'm hoping that Becca will be recovered enough for us to go to camp with him. Being a pastor may not come with fancy trips to tropical resorts (except when your friends get married in incredible places - thanks, Lauren! :) ), but darn if a week at camp isn't nearly as much fun! (Okay, it's a completely different kind of fun...and I bet it will only get more and more fun as Becca gets older!)

That's all I've got, other than some cute pictures of Becca and John, which I'll try to add in a little bit after I empty the camera. Looks like she's going to be just fine!

And here's a picture! You can see the IV in her arm and the one in her leg, her blood pressure cuff, and the dressing she's got around her middle, which is to keep her from playing with the button, not because she is oozing that much or anything. Oh, and you can see the gross drain - the connection is wrapped in a diaper to prevent spillage.


I was walking out the door when I got a text from John saying that surgery has been rescheduled for 12:30. Poor John will get to hang out with an NPO ("nothing by mouth") Becca for the morning...but I'm eating breakfast and going back to bed. It's his turn. :)

Wednesday, July 7, 2010


Surgery is set for early tomorrow morning. Shouldn't take long, but it may take a while for me to post because Becca wakes up almost instantaneously -- and hysterical -- after anesthesia. I'll let you know what I can when I can - but soon we'll be on the other side of this craziness!

Not Today

Surgery is "scheduled" for some time tomorrow. Never saw an attending today, and I'm hearing flat-out lies from residents. Seems I have a reputation with the team, and they are avoiding coming to talk to me. You don't have to like me. But you better take care of my kid. I'm pretty sure that the attending isn't actually avoiding me, but quite sure the others are. Guess the attending is just too important for a silly g-tube case today.

I think that's all I'll say because I'm probably not going to be very nice if I go on. I'm going home in a little bit (SuperDad is supposed to be here in 45 seconds - and don't think I'm not counting!) and coming back early in the morning. Becca's doing fine and had a great morning (which I'm hoping to post more about later). I'm sure she'd like to go home and see her puppies and her pretty new room, but she's feeling good (except for the puking again this morning, which the doctors won't talk to me about) and, for the most part, having a good time, at least when we aren't poking her, pinning her down, taping things to her face or otherwise fiddling with her person.

Okay, I will say one more thing: I don't think my daughter is more special than the other kids here. (Okay, I think she is, but I know that other people probably don't think so, and she's certainly not any more special simply because they have highlighted her story.) BUT - if you are going to take a patient's story public and put her on the cover of the magazine and the front page of the website, do you think that maybe, just maybe, you should make sure she is treated well and her parents are treated with respect? Maybe?

And that is all.

UPDATE: The fellow and the attending just came by. The attending had clinic in the morning, but apparently none of the residents or the fellows thought to communicate that either to me or to the nurse, instead preferring to say not particularly nice or helpful things to/about me. The attending did agree that we should see an attending every day. I'm perfectly happy if that's in the morning or in the afternoon, as long as I know when it is (generally - I'm not looking for a scheduled slot), so I can plan accordingly. When you have been in the hospital for 10 days, you generally can't just sit in the room and twiddle little toddler thumbs until a doctor shows up at 3:30. If I had known there were coming in the afternoon, I might have (gasp!) taken a shower or actually gotten lunch (instead of eating Becca's leftovers, which, unfortunately comprised a small meal) in the 10.5 "free" hours I had before they arrived. All I needed was one sentence: "Dr. Gillis is in clinic this morning, but she will round this afternoon." Communication, people. Communication.

Tuesday, July 6, 2010


So far today, we've had projectile vomiting, a new n-g tube placed, an x-ray, an echocardiogram, a session with physical therapy, a session with occupational therapy, exams by an intern and a fellow, interesting rounds with the attending, a mini exam by an endocrinology resident, a round of phone tag with the case manager, a conversation with the home health agency, and three groups of visitors (2 of whom brought food, all of whom were/are wonderful). And it's 1:00. My, there's a difference between July 5th and July 6th! Still to come are a visit from the G-tube nurse (to give John and me some training), the gastric-emptying test (now scheduled for 3:00), and a visit from the home health folks (to deliver supplies, even though we don't know which formula we are going home on).

After that, we're just waiting for the surgeons to come get us at any point - middle of the night, tomorrow, (Lord help us!) the next day, etc. Yes, we've decided to get the g-tube. I'm going to spare you the gory details of the decision-making process because I really, really want to eat the food brought by one of my future sons-in-law, but we have decided to go ahead with the surgery and to do it inpatient while we are here. I'm thrilled to have made a decision, and I'm hoping and praying that it's the right one. Well, maybe there wasn't a "right" and a "wrong" here, but I hope it turns out to be a good one. Time will tell, I guess.

For now, it's time for mama to FEAST!

Monday, July 5, 2010

Day 133

Another day, another destiny. (Yep, it's another name that...!) Not really another destiny, but lots of opinions swirling around.

Last night, I placed her new n-g tube for the first time. It was traumatic for both of us, not even kidding. Three nurses had to hold her down while I stuck the tube up her nose and then down her esophagus. If I had to, I could do it again, but, wow, I felt like I was torturing her. That experience kind of tipped me over the edge regarding the surgery. It sounds odd, but surgery would actually be easier for her than having us pin her down and torment her all the time. Save the torment for middle school, right? To be fair, though, we shouldn't have to do it very often. If she leaves it in place and it doesn't get dirty, we'd only have to replace the tube about every 3 weeks, but chances are we'd have to do it earlier. I also am pretty sure that we took a few steps back in the work we've done with her oral aversion by my literally forcing something up her nose. That can't be good. The benefit to the n-g tube is that it would buy us some time to see if she keeps the growth up and if she will need tube feeds more long-term (more than a couple of months).

This morning her weight was down a little, but that wasn't surprising. We're still up 155 grams net (nearly 5.5 ounces). We did decide to offer her Pediasure during the day in her sippy cup instead of her usual Boost, just in case shaking things up some increased her intake, and she did willingly (maybe not eagerly, but getting there?) drink 6 ounces of it from lunchtime on. Add that to the 13 ounces of Peptagen she got in her tube overnight, and we're at 19 ounces of formula, which ought to be enough to make her brilliant. I think John and I realized today that our goal isn't really pure weight gain - she's got plenty of time in her life to pudge up and make the Wii Fit board squeak, "That's obese!" (not that I've ever heard that or anything...). The lack of weight gain is indicative of a lack of nutrition, which her little (okay, huge) brain and body need to develop. Remember the whole deal about eating a good breakfast the day of TCAP's? Yeah, nutrition really does help your brain. Elementary, I know, but in our food-disordered society, I think it's easy to forget.

I was mean and woke John up early so that he could get here for rounds (remember, the only time you can get an attending or a fellow even) so that he could ask all his questions personally, which I think turned out to be a good idea.

We also saw an endocrinologist today, and she's going to run one more test tomorrow, looking at Becca's growth hormone levels. She (Dr. Najar?) explained Becca's IUGR in a new way. She said that, yes, it was due to the placental insufficiency, but that it was really a protective measure because these teeny babies know not to grow bigger than their nutritional "house" can support. So even in the womb, they learn not to respond to growth hormones normally, a pattern which continues as they grow up. Given her size at birth and her size now, Dr. Najar guesses that Becca will probably naturally grow to be about 4'6" or 4'7". Now, that's all a guess (an incredibly educated one, of course!), but wow. That's small. With growth hormone therapy, we could probably bump her up to close to 5'. We'll talk about this more with our regular endocrinologist (Dr. Lomenick) at our appointment next month, but it was really interesting to hear her perspective. The relevance to today's questions is that giving her tube feeds and "optimizing her nutrition," as they like to call it around here, is not going to make her taller, though good nutrition is necessary in order for her to reach her full height potential.

So add that test to the list of things to get done tomorrow, and I'm starting to doubt we'll be discharged before midnight. If we decide to do the surgery, they are going to try to get us in on Wednesday, so we'd stay the night again on Tuesday, Wednesday, and possibly Thursday, but if we decide to go home on the n-g tube, there are still shooting for discharge tomorrow (after the visit with the GI nurse, the gastric-emptying test, a conversation with our regular GI, the growth hormone test (which is probably just a blood draw), a "curbside consult" with cardiology (not an official consult - just a call or something to see if they have any thoughts about cardiac issues that might be eating up extra calories), and the normal (forever-long) hospital discharge process). At least we don't have an hour to drive home afterwards.

Two things I've learned this weekend: 1) the 4th of July weekend is perhaps the worst time to be in a teaching hospital with all the transitions but barely any availability, not just of experienced specialists, but of lab techs, nuclear medicine folks, therapists, and everyone else that messes with you the rest of the week; and 2) it's a great time to be in the hospital because the nurses have fewer patients and your friends have time to visit! We got to see even more friends today, including Aunt Lauren, the Kelley family (all dolled up for Granna's birthday party - Kate was ADORABLE, and her parents were looking pretty swank as well!), and Miss Caroline, who is now officially allowed to be our friend since she is no longer our feeding therapist. Hooray for professional boundaries and hooray for not having to have them anymore! (I mean, not that I ever filtered that much anyway, but you know...) :) The visits really made a frustrating day go faster, so thanks, guys! I think they also help Becca remember that not everyone who comes through the door is going to poke her or make her mommy and daddy talk all serious-like.

I love the excuse to see friends, but here's hoping they can come visit us at home soon, with the difficult decisions behind us and a fun, relaxed summer ahead of us.

Sunday, July 4, 2010

Our 2nd 4th in the Hospital

Not much new to report today. The new formula went well, and she pooped this morning. The doctor wants her to be a "daily pooper," which she usually is, but they may send us home with some kind of laxative to use on an as-needed basis so that we keep things moving along. (I believe that getting stopped up can lead to vomiting and other issues.) She gained weight last night, but I wouldn't be surprised if she loses some tonight. Overall, we seem to be up a few ounces, so we are moving in the right direction, and that indicates that she is benefiting from the increased calories. They've put in a formal consult with endocrine. I don't know if I've mentioned it, but I've been trying to get endo to take another look at her while we are here (instead of at our scheduled appointment next month) because it seems like when looking at growth, GI and should tag team, because part of the issue is calories in/calories out and digestion, but the other half of it is hormonal. The new attending agrees, so we should see someone from endocrinology tomorrow or Tuesday (probably Tuesday). We are also waiting on the emptying test I mentioned (probably Tuesday) and to meet with the G-tube/ostomy nurse (also Tuesday) to learn more about a G-tube. I think part of our hesitation is that it's just kind of weird to put a tube in your child that gives direct access to her stomach. Honestly, I think it kind of grosses John out. (It tends to take more than that to gross me out!) We'll continue the overnight feeds for another two nights, which will give us a full week's worth of measurements to analyze her trends. Assuming everything gets done, we'll likely go home late on Tuesday with the n-g tube and a pump and continue overnight feeds while we make a decision about the surgery. You can be on an n-g tube for several weeks and even months, so that way we won't have to rush and can schedule surgery for a convenient time (as if there is actually a convenient time for surgery, right?) while she still gets the nutrition she needs.

But enough about that.

We did have some fun visitors today! Downtown Millie Brown (Becca's first nurse ever and seamstress extraordinairre) checked in on us, and "Pammy" came and played with Becca so that I could hike down to Franklin and hear John's first sermon at the new church and shake a few hands. (He did very well, I thought!) He and I also grabbed a quick lunch together so that we could try to talk about things without Becca. I was wonderful, even though all we talked about was our home warranty and the plumbing issue that it won't cover (ugh) and medical stuff. When we got back, we heard that one of our favorite doctors of all time, Dr. Weitkamp, had stopped by to see Becca, and he was able to come back by when we paged him. He was Becca's first attending in the NICU, and he took care of her for her first - crucial - 6 weeks. And then (I told you it was a fun day!), two of our favorite nurses, Leigh and Mary Emily came by! Leigh was one of our primary nurses and Mary Emily was often close by (and is hilarious, by the way). It was fun to see them and catch up briefly before they had to go back to saving sick babies.

How about some cuteness? Becca has found a favorite spot to play in our room. The back of the couch/pull-out "bed" is a cabinet, so it's got a flat top to climb up on. It's flush with the windowsill, which is actually about 6 inches lower, so together they form a little seat and play table for her. Here she is playing with Noah and his ark. So cozy and cute!

All in all, a good day. Rumor has it that the 8th floor has a great view of the fireworks, so we're going to check them out later. Should be fun!

Saturday, July 3, 2010

But on the Other Hand...

...yesterday was one of the best days ever.

She really walks now - not just a step or two or several more in therapy, but down the hall!  And it's not just to get from me to John or from one toy to another - she's walking because she likes it!  She really likes it!  I really haven't seen her crawl much at all in the past 48 hours.  When she's not walking, she's knee-walking, which is definitely a shift in the right direction.  I am so proud - beyond proud! - and wondering what it means that this huge milestone occurred in the hospital.  My silly old bear needed an audience.  (And yes, she did pause mid-video to wave at the nurses at the desk.  Pageant queen.)

Sumner Station folks, please make Jane watch this one!  Jane, look what a walker we've created!  Thank you!

Much Improved Mama

Today was a much better day.

Sidenote:  I would not for a minute say that yesterday was a bad day in the hospital.  Yesterday was an exceedingly frustrating day in which I saw the inefficient side of a teaching hospital.  Having had a critically ill child in the hospital before, I can't say that it was a bad day.  Bad days are ones in which serious conditions worsen, you get new diagnoses, you wonder if you will ever take your child home.  Compared to our happy life outside the hospital, yes, yesterday was a bad day.  But inside the hospital, yesterday with my happy and healthy though medically enigmatic little girl was just one of those frustrating days.  But not a bad one.  End sidenote.

Whatever you want to call it, today was a much more pleasant day.  Even though I talked with the (new) attending and 2 fellows for probably close to 45 minutes during rounds today (fyi, if you haven't been in a hospital before, that's a pretty long time, especially on the weekend) and both John and I had a follow-up for another 45 minutes with the senior resident on our team later, we still have some unanswered questions (but not the full list of 15, at least).

We did learn a few things and make some changes.  It turns out that the new attending was under the impression that John and I are on board and had (metaphorically) signed off on the g-tube surgery, which is not the case.  I think I've mentioned that I am more okay with it than John, but we both have to be on board, and the more I've listened to his hesitation, the more it's becoming contagious.  We just want to make sure that surgery a) will fix the problem; and b) is just about our last resort.  I know it's not a bad surgery or anything, and all the mothers I have talked to whose kids have gotten one have been tremendously relieved, but it is surgery, it is another kind of special need, it is another thing to worry about, and it is another scar.  We're definitely not saying no to the surgery, but we want to make sure that it's the right choice.  (I mean, have you met us?  I may sound spontaneous at times (all talk!), but I am a METHODist, and John Hill is, well, John Hill.)

Of course, then, we are looking closely at her growth in light of the overnight tube feedings she has been getting.  She's been weighed most mornings between 7 and 8 (unless otherwise noted), totally stripped down and on the same scale. Here's how her growth has gone:

  • 6/28 at 8 pm (the night we came in): 7.445 kg 
  • 6/29 didn't get weighed (not sure why...maybe because the day before's measure was at night?) 
  • 6/30 7.575 kg (+130 g)
  • 7/1  7.605 kg  (+30 g)
  • 7/2  7.615 kg (+10 g)
  • 7/3  7.510 kg (-105 g)......................for a net gain of 65 grams (which is a little over 2 ounces)
When John and I were looking over her stats earlier, we didn't have her first weight in front of us, so we were pretty disappointed with her growth and not at all convinced that we are seeing enough gain to warrant surgery.  I haven't talked to him since I pulled all the numbers, but things do look much better when you take the initial weigh-in into account.  Still, though, to keep it in perspective, let me tell you that she pees about 75 grams a night, so we're still not talking earth-shattering improvement.  And, as you can tell, she could easily drop again, but it is good to see an overall gain over the course of 5 days.  Tomorrow will probably be high since she ate pretty good amount, didn't poop, and even though she threw up again, it wasn't quite as much as usual.  (By the way, a kilogram is 2.2 pounds, so today she was right at 16.5 pounds.)

We are concerned that when she does throw up (about 2 out of every 3 days, always while eating solids), we often see undigested pieces of food from the last meal, often several hours ago.  This coupled with a family history (with cousin Emma) of motility issues (no, not mobility issues, for which you should call The Scooter Store or get a Hoveround depending on whether you just want to get around your home or visit the Grand Canyon - yay Price Is Right commercials!), we (meaning John and I and the one resident we have convinced) are concerned that there might be some gastroparesis going on.  Basically, it means that the muscles in your stomach don't move food through efficiently so it sits there for a longer time, wasting nutrients, making you feel full, and causing you to vomit.  The folks in nuclear medicine will do a gastic-emptying test to diagnose it, and we'd treat it with meds.  That test has been ordered, but it likely can't be done until Tuesday since it's non-emergent (and Monday is a holiday).

In the meantime, we are trying a different formula.  So far, we've been using the same formula she gets in her sippy cup in the n-g tube (Boost Kid Essentials 1.5). Tonight we are going to try Peptamen Jr. 1.5 and see how she tolerates it.  Calorically (caloricly?), it's the same as the Boost, but it's easier to digest, so it may move through more quickly and/or just make it easier for her body to suck out the nutrients without burning as many calories.  We're also increasing the rate, so that instead of getting 12 ounces over 8 hours, she'll get closer to 13.5 ounces.  (We may go up again, but you don't want to increase volume too quickly because it can increase vomiting and other issues.  This is an old NICU lesson we learned again and again - remember "working up to full feeds" and such?)  Because she's getting the formula at night, she is drinking almost zero formula during the day.  We keep offering it like normal, but she has had maybe an ounce or two each of the past several days.  She's just not at all interested in it.  This means that we're only at a net gain of 2-3 ounces of formula intake (with feeds being given at the current rate).  If we are going to do surgery, we're going to have to maximize that gain.  (Though it is much easier for me to give her milk in the tube at night rather than pushing it all day, we've got to think about what's going to work best for her in the long run.)  The night feeding do seem to have decrease her appetite for breakfast some, but, frankly, about 90% of breakfasts for her end up being non-meals normally anyway (a handful of cheerios and a strawberry or something like that).  Lunch and dinner seem to be about normal, though since they only have chicken tenders here (and not chicken nuggets), we are relying solely on shredded cheese (and the formula at night) for protein.  (Becca, like a decent number of other toddlers, will only eat nuggets, not tenders.  Don't ask me why, but it's the truth.  No matter what you do, she somehow knows it's a tender and not a nugget.)

We also talked to the docs about possibly treating her with an appetite stimulant.  They were really hesitant to go there because apparently the ones they typically prescribe have some neurologic side-effects.  They typically only use them for anorexic teens (and adults, I'm assuming, but we're in the kids' hospital).  I'm looking into some other options along these lines, though.  For example, I have a friend whose daughter is on a particular antihistamine, one of the side-effects of which is increased appetite.  She's gained a couple of pounds after being on it for a shortish period of time.  And, hey, maybe it would help with the nasal allergies she seems to have inherited from both of us!  If any of you have thoughts on this topic, I'd love to hear them!

 I'm also pushing the doctors to look outside Vandy and talk to some of the doctors who have dealt with kids with similar histories.  John and I both think that given her incredible struggle for survival in the womb, when she wasn't getting nutrients and went for weeks and weeks without showing any growth at all, her metabolism might just be set funky.  I mean, nobody has been able to tell us that this isn't the case, and they can't quite figure out why she isn't growing when she is getting a decent number of calories (though not as much as they would like), so why not do some research and see what you can find.  I even suggested talking to some of her neonatologists (which spell check wants to correct to "paleontologist," by the way) who did such research when they were caring for her.  One doctor made the mistake the other day of telling me that the attendings see cases like this all the time, and they know exactly what needs to be done.  Frankly, that is simply not true.  We've had problems with growth since before week 15 of the pregnancy.  She's got an incredibly complicated medical history.  She's the smallest kid they've seen here.  But even if she weren't, even if she was a strictly "textbook" case, attendings don't know exactly what to do just because they have seen a lot of failure to thrive kids.  Every single one of them is different, and they have to be looked at that way.  I feel like the attendings (generally) understand that, but, wow, I think it's an important lesson to learn when you are in training.

I think the doctors were seriously considering discharging us today or tomorrow to do n-g feeds at home, and then schedule surgery outpatient (though we would stay for a night or two post-surgery).  I emphatically (but politely) told them that I am not ready for that.  We still don't have answers, we haven't finished all our tests, we're still experimenting with new formulas, rates, and volumes, we still need daily weight checks, and we haven't settled on a plan of care.  As hard as they are to get to inpatient, they are almost literally impossible to get to outpatient (but you've heard me talk about that before.)  I am not going to leave until we know what is going on (or until insurance refuses to pay, of course ;) ).  And if we do decide to do a g-tube, I'd rather do the surgery while we are here instead of uprooting Becca again, going home for a few nights, and then bringing her back here (and waiting for a surgery slot and then for a room afterwards - ugh) in the near future.  I'm sure they would have liked to have discharged another patient before the holiday, but tough luck.  (Our 12-bed unit, by the way, has been full or nearly full all week, but by this afternoon, there were only 5 of us left.)

I'm sure there's more to say, but I'm out of energy, and I'm sure you are sick of reading.   Thanks for your patience and encouragement.  By the way, I didn't contact patient affairs today.  After speaking with nearly everyone involved, I am confident that the people who made mistakes now know what to do in the future, and now that we are through the, um, troubles (Jon Stewart would have another word), that's all that I care about.  And, as one friend told me, at the beginning of July, everyone except the attendings are scared to death because everyone is new in some way (interns come on, residents move up, chief residents begin, fellows begin, etc.).  If the problem has been rectified, no need to make it worse.  As long as they continue to get it right, that is. I'll fully forgive and forget when we are done with this stay, these doctors, etc...but for now, I'll practice my (polite) hermeneutic of suspicion.  (Thanks, Candler.)

Friday, July 2, 2010

I Am Less Pissed

I won't get into all of the details right now because I'm trying to unwind before going to bed, but I will say that things are looking up.  We still did not get to see an attending this afternoon, nor did we get the test results that we needed, but I did get to the root of the problem.  Of course, that was around 9 on the Friday night of a holiday weekend so the attending had gone home (and only comes in for morning rounds and emergencies), but I do feel better knowing that the problem concerned residents not following (or knowing?) protocol and multiple breakdowns in the lines of communication.

Today, we did not have access to our daughter's attending physician, and while I understand we are in a teaching hospital and I appreciate that structure, it is NOT okay for a parent not to have access to an attending.  I mean, I don't expect them to come right away or to take my call at home on the weekend or anything, but when, during the work day, parents have a list of 15 questions that the residents are unable to answer and outside nurses are coming to train you on home care post-surgery, you really ought to be able to talk to your doctor.  Even better if the residents are there and can learn something and/or give their input, but, please, let me talk to the expert.  They are why we are here.  I'm happy to use the interns and residents as our first line, but if they can't answer the questions, they need to get the answers for me.  And if they don't have access to the test results, they need to track down the attending and have them read them.  (Seriously, the results have been sitting in the computer since 2 this afternoon, but only an attending (not even a fellow) can access them.  And these results may chart the course for the next few days.  C'mon.)

But - it turns out that we DO have access to our attending if the residents in question do contact them the proper way, which, despite my, um, persistent insistence, they did not (in fact, they told us they weren't allowed to contact him at one point!).  So, I feel better knowing that the process is as it should be (though multi-layered - back to the teaching hospital thing), but today the process broke down, and that's not okay.  But I make mistakes, too (who, me?), so I'm going to try not to hold a grudge, though I am planning on calling patient affairs in the morning just to make sure that things are handled better in the future - for us and for all the other families with whom these winsome and well-meaning residents will work.

(But if it happens again tomorrow, I'm busting open a can of whoop-ass.)

I Am Pissed

I'd better keep this short so that I don't type things I might or might not regret, but I am one pissed-off SuperMom.   I got a call from a home health agency who had received orders earlier today to set us up with home tube feeds BEFORE we had talked with the doctors about even having the damn surgery OR being discharged.  How f'ing backwards is THAT?  We find out about a plan of care - including surgery - from the insurance person at the medical supply/home health office?  NOT COOL.  Since then, we talked with a resident and a very scared intern (who then dropped a prescription for another patient in our room - oops) but are still waiting to talk to the attending and it's 4:24 on the Friday of a holiday weekend.  And apparently surgery is coming to consult as well, supposedly also today.  Not that we've actually decided even TO HAVE surgery yet or anything.

I.  Am.  Mad.  And I've got to say, I'm tempted to contact our buddy from last week's conference - the hospital CEO.

Thursday, July 1, 2010

Yadda Yadda

Not much new to report today.  They replaced the pH probe this afternoon.  Turns out that the doctor last night could have dropped it last night but her didn't know that.  Guess that's the downside of a teaching hospital - the attending last night was a final-day emergency medicine intern who was finishing up his 1 month non-critical rotation...not so up on minor GI procedures that the GI nurses usually handle.  Oh well - she only ended up having to go NPO for about an hour so that she didn't have a really full stomach when they are poking tubes down her esophagus and coughing a lot.  We did figure out (with the help of a child life specialist) that we could place the probe while she was in my lap instead of holding her down on the bed, which she (not surprisingly) hates.  The attending (who is back in my good graces because he actually came by twice today) looked at the biopsy slides and is pretty sure that there is nothing abnormal.  (There is a very slight chance that the pathologist may find something else, but I'm pretty sure Dr. Moulton would have found it, and so is he.)  Once we have the results from the pH probe, he may order a gastric emptying test, which I think involves dye and pictures but no sedation, but for now, they are doing another night of tube feeds and weighing her in the morning.

By the way, you may be curious about the weight stats since that's what we are looking at so closely.  I'm not at the hospital (it's my night at home), so I can't have the nurses pull the first couple of weights, but here's what I know offhand:

Wednesday @ 06:30 - 7.575 kg (16.65 pounds)
Thursday @ 07:00 - 7.605 kg (16.731 pounds)
for a gain of 30 grams, or approximately 1 ounce.

I don't know how good that is, but I do know that's the gain that they wanted to see in the NICU everyday, but 1 ounce in a toddler could be the difference of whether or not she has peed lately.  (Since she is in the hospital for "failure to thrive" (the official diagnosis of being and remaining itty bitty), all of her weigh-ins are done sans diaper and on the same scale to maintain accuracy.)

That's all I know!  It's time to snuggle with my pups!