Friday, July 30, 2010
Thursday, July 29, 2010
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
exploring underneath the hospital crib....
having a bath in the sink...
making the rounds, waving like a princess from my
getting tucked into bed with all of my friends...
playing with my borrowed naked baby...
hanging out with my buddy Daxton...
Saturday, July 24, 2010
Friday, July 23, 2010
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?
Thursday, July 22, 2010
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
Tuesday, July 13, 2010
Monday, July 12, 2010
- 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,
Sunday, July 11, 2010
Saturday, July 10, 2010
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?
Friday, July 9, 2010
Thursday, July 8, 2010
Wednesday, July 7, 2010
Tuesday, July 6, 2010
Monday, July 5, 2010
Sunday, July 4, 2010
Saturday, July 3, 2010
Sumner Station folks, please make Jane watch this one! Jane, look what a walker we've created! Thank you!
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)
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
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. 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
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!