Post-Op Babble

Wondering how Becca feels tonight?

I think she's doing okay. :) She woke up from her afternoon nap babbling away like this and didn't stop until we put her to bed. Same thing happened after her first set of tubes. I think that now she can hear better, she just wants to talk to hear herself! It's pretty hilarious to watch. By the time I filmed the video, she was getting sleepy, but, wow, she's been active this afternoon.

As far as the actual surgery...it went well. I started to get a little nervous because it took a little longer than we expected, but it turns out that her right eardrum was retracting into her middle ear so much that it was hard to get the tube in. (Basically, the pressure built up in the middle/inner ear kind of sucks the eardrum back...which sounds pretty painful to me!) It also turns out that her adenoids were "big and gross," so even though we had just planned on taking them out as a precaution, they really did need to come out. It's a really good thing we were able to get in for the surgery so quickly! Becca should be a lot more comfortable now...not that she was showing us that she was in pain, tough kid!

Like I said before, she had a rough wake-up, as usual, but it was actually a little better than normal, since she "just" cried for hours instead of screaming, wailing, and crying. Still pitiful, though. AND they gave her the D-10 IV fluids instead of the normal stuff after surgery...and I didn't even have to insist too much. I realized on the way home that though we've never had a really scary surgery, we've never gotten to take her straight home after surgery before...so it was nice to be quite boring (albeit the loudest party in the PACU).

My guess is that over the next few days we'll start to see some improvement in her speech and balance, though the balance bit might just be some wishful thinking, according to the doc. Speaking of the doctor, I was again reassured that we made a good move by switching ENT's. Dr. Goudy is a much better match for Becca's issues and my, um, anxiety.

Oh, and our favorite pirate pastor came to pray with us before surgery and even prayed in kid language. I love that he knew that Becca's spiritual needs were as important as our own, if not more so!

All in all, I couldn't ask for more out of today!

Home

Hey! Surgery went well. We're home and nearly all sleeping. (I'll be drifting off in a moment, hopefully. Last night was kind of rough and this morning was...early.) No issues with her blood sugar and no trouble with the surgery, but, as always, Becca woke up quite distraught (to put it mildly) and cried for 2 straight hours. Again, we got the "maybe if you go ahead and take her home she'll feel better" treatment. I'm not complaining about that; it's just kind of amusing to be pseudo-kicked out of the PACU. Cousin Emma knows the feeling. :) I'll give a few more details later, but now, I sleep. Thanks for the advice, kind words, and prayers!

Waiting for Surgery

This may be sideways - first time posting from my phone!

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Upcoming: Surgery #4

Yup, we're going in for another surgery this week.

At last week's audiology and ENT appointments, we determined that Becca is again having trouble hearing because she has fluid behind her eardrum. (This is the same issue that made her functionally deaf by the end of her NICU stay.) Her first set of tubes was placed at the beginning of February 2009, and her hearing dramatically improved instantaneously. Since then, we've gone through, "Hmmmm...I can't see the tubes...but they are so small, I'm not sure I would..." and, "Well, I don't know if she's hearing and just doesn't want to participate in the tests...or if she's just not hearing..." and (from our now ex-ENT), "She's got irreversible nerve damage; let's get her fitted for hearing aids ASAP," and, "No, let's sedate her and test her hearing first [this past February]...Ha! He's wrong!" and, "Hmmm....maybe she does have fluid again...let's give it a few months and see if it drains..." and then, last week, "Yep, the tubes are definitely gone, and she's definitely got fluid keeping her eardrums from moving, so it's time for surgery."

Well, at least we know we covered all our bases. :)

So, on Thursday morning at the crack of dawn (who am I kidding - before dawn!), the three of us will head up to Vandy, where Dr. Goudy will place a new set of tubes and remove Becca's adenoids. Right now we don't know if her adenoids are enlarged or anything, but when a kid gets a second set of tubes (most don't need a second), removing the adenoids reduces the chance of needing a third set by 50%. The hope, then, is that by doing both now we'll give her itty bitty ears a better chance of draining the fluid so that a) she stops getting ear infections (though she hasn't had that many...maybe 3 this year); and b) her eardrum can move, thus enabling her to hear clearly. She obviously still hears, but we have noticed that her new words are not very clear, and I'm putting the pieces together to realize that the muddled hearing might be the explanation for the mildly-delayed expressive language score we saw in her Bayley exam.

We're feeling good about the surgery. The difficult bit is figuring out how to maintain her blood sugar when she won't be getting all of her overnight tube feeding on Wednesday night. (Before surgery you have to stop all food, milk, formula, etc at midnight.) Remember, when she misses a night feeding, she gets hypoglycemic - and that's when she had her seizure in the hospital. We are working with the anesthesiologist, our endocrinologist, and our pediatrician to come up with a plan (other than mama putting the beatdown on any nurse who says that she doesn't need IV fluids, and the extra-sugary ones, to boot), and our current thought is to stop her formula at midnight and switch over to apple juice (through the tube, via the pump) until we have to stop all fluids at 4 am. While she's in surgery at 8, they will place an IV and begin fluids (D-10), which we will keep giving her the whole time she's in recovery (about 5 hours, probably). I don't know if this will be enough, since apple juice is not nearly as rich as her formula, but we'll also be checking her blood sugar periodically to make sure she's doing okay.

If none of the ear stuff made sense to you, here's a diagram that may help. (The tubes go where the eustachian tubes are labelled - they help kids with small or underdeveloped eustachian tubes drain fluid. See how enlarged adenoids could also block the tubes?) If you have specific questions, feel free to ask in a comment. Also, if you have experience with adenoid surgery, I'd love to hear any tips or stories! I hear the post-op breath is AWFUL! And, as always, we'd appreciate everyone's prayers, for the prep time/feeding issues, the surgery, and the post-anesthesia hysteria we tend to see with Becca.

Mr. Moon, Moon, Bright and Shiny Moon...

Our current 2-year-old obsession:

Make an on-line slide show at www.OneTrueMedia.com

Wednesday Weigh-In

I think I forgot to post last week, and now I don't even remember what she weighed. I think she had just gained an ounce or so? At any rate, here are this week's stats compared to 2 weeks ago.

Two weeks ago: 8.4 kg (18 pounds, 8 ounces), 30 inches

This week: 8.45 kg (18 pounds, 10 ounces), 29.5 inches

Two week's change: +50 grams/2 ounces, -0.5 inches

Net change: +750 grams/26 ounces, +0.5 inches

Two ounces in two weeks is not the kind of gain we are looking for. We'd like to see about three ounces a week. I'm not sure what else to do about it, since she throws up if I bump up the volume of milk, and she's eating her solids fairly well. Last week, the nutritionist sampled us some super-duper juice that has over 300 calories per 8 ounce juice box (compared to about 70 calories in regular juice), but we've already run out. This summer, she gave us a can of DuoCal (powder calorie booster) to put in her juice, but Becca refused to drink any of it; now we're mixing it in water and putting it straight into her tube. That gives her an extra 25-50 calories per day (depending on how much I'm able to get in there before she wiggles away again). I think she's just so darn active these days that she burns everything off. But we want her to be active! I guess we'll keep trying to push the Nutella (yum!) and "popples" (a.k.a. popsicles).

Here's a picture of Becca hanging out with her favorite Hill aunt (Jen) this weekend while I was in New York. I think it's pretty obvious just how much they love each other!

p.s. Be sure to check back tomorrow for a video! I've been getting lots of requests for videos, so I'm trying to upload some of the many that are languishing on our hard drive. This one's super cute!

Developmental Update, 2 Years Adjusted

One of our appointments last week was Becca's 2-year visit to the NICU follow-up clinic. We were sad to find out that Dr. Daily had retired, but we got to once again see Odessa Settles, who I believe has been working with preemies at Vandy for 40-some-odd years. Wow. She's extra cool because she's a vocalist on the side, appearing as a regular cast member on Tokens, "Nashville's New 'Old Time' Radio Show." In fact, they are recording an episode at the Ryman on the Sunday before Thanksgiving, and the guests include Keb' Mo' and Shane Claiborne. John and I are going, so let me know if you'd like to join us...or if you want to hug an Itty Bitty that night. ;)

But back to Becca. This visit involved a complete Bayley exam, which measures development in 5 areas: cognitive (thinking and figuring things out), receptive language (words she understands), expressive language (words she actually uses), fine motor skills (tiny movements) and gross motor skills (big movements). (The previous link describes the 5 areas in more detail, if you are interested.) For each area, I'll give you 4 scores: the overall average for kids taking the test, her score based on her actual age (27 months), her score based on her adjusted age (24 months - remember, this is based on her due date "birthday"), and her age-equivalent.

Cognitive: Average = 85-115

Actual = 95

Adjusted = 105

Age-Equivalent = 25 months

Receptive: Average = 10

Actual = 10

Adjusted = 12

Age-Equivalent = 26 months

Expressive: Average = 10

Actual = 8

Adjusted = 9

Age-Equivalent = 22 months

Fine Motor: Average = 10

Actual = 8

Adjusted = 10

Age-Equivalent = 23 months

Gross Motor: Average = 10

Actual = 6

Adjusted = 7

Age-Equivalent = 18 months

When thinking about these scores, keep in mind a few things:

• These scores are a snapshot of the tasks she was able to complete on a particular morning. I'd say that she was pretty much herself that morning, though she did get tired by the end of the 2-hour exam (go figure).
• When looking at month-by-month age equivalents, our goal is still for her to track according to her adjusted age. Many doctors, schools, therapists, etc. stop adjusting for prematurity at age 2, but folks in the NICU follow-up clinic say to give micro-preemies (preemies born weighing less than 2 pounds) until age 3 to catch up. In other words, she will look more delayed because most assessments stop adjusting, but don't get too worried about lack of developmental catch-up until she is 3. (But then again, much of a child's developmental trends are well in place by age 3; that's why many public health organizations focus on the 0-3 years.)
• Given her history, every single one of these scores is absolutely amazing and far better than we even risked imagining 2.5 years ago.
• And the usual caveat: no developmental assessment (or any standardized test) is perfect.

That being said, these scores are okay. I wouldn't say she blew it out of the water or anything, but none of these scores is really surprising. Based on her adjusted age (24 months), she is delayed in expressive language (by 2 months), fine motor skills (by one month) and, most significantly, gross motor skills (by six months). Based on her actual age, she is delayed in every category, the most dramatically so being her 9 month delay in gross motor skills. This score is even more sobering when I realize that had she not started walking this summer or had we done the assessment at our regularly scheduled appointment (the day after her birthday), she would have scored at an 11-12 month level for gross motor skills. The positive flip-side of that is that she gained 6 months worth of skills in 2 months just by learning to walk. So I'm pretty sure that Jane and Ashley (our physical therapists) deserve a very big shout-out on that one. In fact, let's take a minute to thank ALL of our incredible therapists: Cindy, Jane, Caroline, Karla, Roxanna, Ashley, Tom and Melissa. Without their help, I shudder to think of how far behind we'd be. As much as I get sick of carting the kiddo around to appointment after appointment, I am so thankful for all the work and love these therapists have poured into my sweet child. It really does pay off!

Based on these scores, we're not sure if Becca is going to qualify for special education services when she turns 3. I don't know if I've mentioned it on here or not, but at age 3, kids with special needs shift from Early Intervention to the public school system for their services. When we moved, we made it a priority to live in a school district with a very good special education program in case we needed it (whether for Becca or for our other potential preemies down the line...and yes, John and I do plan that far ahead for such extenuating circumstances...at least when buying a house!). We'll begin our transition meetings with Early Intervention and Williamson County Schools in January, and they will do another round of assessments, but it looks like she may be borderline for services, depending on which ones they consider primary vs. related. (For example, in many school systems, physical therapy is a related service, meaning that you can't qualify for special education services on physical delays alone. However, if you qualify, say, on speech, you can receive physical therapy at the school as part of your Individual Education Plan.) I know, I know, I'm getting ahead of myself here, but, wow...that's really not that far away! I would be thrilled if she flat-out didn't need services, but I'm afraid that she will fall just above the cut-off and not end up getting the services that would really benefit her. Especially if we lose our TennCare at our next review in the spring, we'd be left with muchos therapy bills. (And therapy is NOT cheap. I opened a bill from PT recently, and each 1-hour session was running about $300. Holy crap.) For now, I try not to think about it too much!

The most important point, though, is that Becca is making tremendous progress. Given the incredible odds stacked against her, she has exceeded everyone's expectations. In fact, if she were taking her O.W.L's, I would have given her straight "O's," for "Outstanding." Yes, we have lots of therapy in our future. (Now that I think of it, I was really hoping that she'd come out with amazing scores and we'd be able to drop some sessions...but we're not there yet.) Yes, we have to do a lot of hard work at home. But yes, she is -- and will continue to be -- absolutely amazing. I'm very proud of you, little girl!