This week was quite the adventure for Ruthe and I! My parents went on a week-long trip to Boston and Vermont and left us ALL ALONE in Las Vegas.
I know what you're thinking. Why didn't we just go to Salt Lake to visit John? Well, two reasons: one, Ruthe had an appointment to get some vaccinations that she was VERY overdue for; and two, we had to take care of the dog. Reason number two is not really a good reason, because the dog technically belongs to my brother, who is perfectly capable of coming over to feed and water Elvis. But Ruthe was about six months late getting these vaccinations, and her pediatrician's office is busy busy (with all us Medicaid patients!), so I couldn't risk ditching the appointment and having to wait another six months.
So we stayed at home and went to the doctor and ran errands and forgot to water the plants and watched Chitty Chitty Bang Bang seventeen times and went to Target and rolled around on the floor and all sorts of fun things.
INCLUDING going The Great Pumpkin Parrot Festival yesterday!! It's a real thing. There's a nature sanctuary here that has all kinds of parrots and fancy birds and chickens and goats and LLAMAS and geese and pigs... And they had a fun Halloween festival with crafts and pumpkins and our friend Teri dressed up as a witch for story time!!
Ruthe was a little taken-aback by all the birds. And all the crazy kids probably didn't help either! But she loved the story time and even did a little dance afterwards!!
She is getting so big and crazy these days! She has even figured out how to sit up in her own!! It's funny - she has to wedge her feet underneath something to get enough leverage for a sit-up. Weird kid.
Tomorrow I am taking her in for her third heart catheterization. I have a problem considering it a "surgery" even though it technically is one. I don't know why, I think I just don't like putting it in the same category as her open-heart surgeries...
Anyway, here's a funny picture of her in the bathtub.
Ruthe and I spent the last two days doing absolutely nothing. It was glorious!
Although, doing nothing has definitely changed a lot, since becoming a mom...
I still had to feed her every four hours.
And change her diaper.
When I would have rather been napping on the couch I was, instead, crawling across the living room trying to catch a naked baby.
"Row Row Row Your Boat" interrupted the important scenes of every show I tried to watch.
Her g-tube attachments can't really wait until tomorrow to be washed... (or at least rinsed out!)
I did, however, successfully evade laundry for another day! So that's one perk. But, by far, my favorite part of doing nothing all day was that it was spent snuggling and smooching my sweet girl!! Sometimes it's hard to fit enough of that in everyday.
She did a lot better with her puking today! Only gagging a little bit and not actually losing any food. (cross my fingers & knock on wood because now she's got a pre-puke cough 😬)
... ... ...
With a whole weekend to contemplate what we learned from her upper GI scans, I've tried to pay closer attention to what might trigger her gag reflex. (Aside from the reflux, I mean.) The doctor mentioned that sitting-up through her meals would help keep her food down. Nope. He also said to thicken her formula with rice cereal, to make it less likely to reflux. I wouldn't know, because it moves so slow through her tube that she never actually got more than an ounce and a half before I had to give up and switch back. He suggested feeding her slower. It already takes at least an hour to feed her, and that's on a good day!
I'm hoping that Ruthe's GI doctor will have the test results tomorrow and will call to discuss our options. And I'm hoping he'll let us at least try using Prevacid or something before going straight to surgery. But I'm not a pediatric gastroenterologist, so I'll just wait and see what he says.
In other news - Ruthe had a speech and occupational therapy session this week, and is doing really well! I need to be better at trying more foods with her, to try and find a flavor/texture combo that she likes so we can work on control and swallowing.
Her speech therapist is also an occupational therapist, so since Ruthe can only handle the high hair for about 30 minutes, we use the rest of our time letting her play and watching how she interacts with her toys. She's been doing really well putting things into containers, so I'm supposed to start using smaller items and smaller containers and having her take things out as well. It's so amazing to me how babies learn things... they're just little geniuses!!
Now, if only my little genius could hold still long enough to have her ears cleaned out, she might hear me when I tell her she's the smartest baby in the world!!
Today we got to see the inner workings of Ruthe's stomach. It was SO. COOL.
We all know that Ruthe's alter ego is the super-villain known as Pukezilla. (She missed the "secret identity" memo.) But the problem with being extraordinary at spitting-up is that her calorie intake drops, she doesn't gain weight, and she develops an aversion to putting food in her mouth.
So after a year of thinking she'd grow out it, and it would get better after her last heart surgery, and trying every trick in the book, I called her doctor and said we needed to figure this out. He agreed, because she actually shouldn't be able to vomit. (They did a procedure called "fundoplication" when she got her g-tube that makes it physically impossible.)
Well, what we learned today is that her stomach function looks fine. Food moves quickly from her stomach to her intestines, and there are no obstructions in her esophagus that are triggering her gag reflex. BUT she does have a very sensitive gag reflex, and her fundo has been loosened so that it no longer does its job. So, when even the tiniest bit of food travels back into her esophagus, she gags, causing more to get pushed up, causing the spit-up. And it started after just 4oz of liquid. Only half of her normal feed. And the doctor pulled 2 of those ounces back out through her g-tube when she started to gag.
The tricky part of what we learned today is that everything is functioning "normally" but that's a problem because Rutge is not normal. Because she has the g-tube, she really needs the fundo to be working. And since she's still going to be on the g-tube for an indefinite period of time, we'll most likely need to have that procedure redone.
So, in summary: Ruthe's scan today went really well! Her results are pretty much normal. But that means she will most likely need to have another surgery.
I hate it when good news is bad news in disguise.
There is a silver-lining though, because now we can try to have this surgery done during the same stay as her palate-repair and I can make a better argument to have them done at Sunrise!!
I was thinking all last week about starting a new series for the blog. I need to be better about documenting Ruthe's milestones, and Sundays are the slowest day of our week. (that's probably not true... but it is the most consistently scheduled day!) It's also one day of the week that I KNOW she'll be fully-dressed AND clean AND super-cute for at least ten minutes. So, welcome to Sundays with Ruthe!!
but - as you can tell from it being Monday - I forgot! I'm going to stick with Sundays in the future, and blame this week on having John in town with us and allowing me to take a beautiful, quiet, much needed nap yesterday.
So, back to Ruthe Clementine... she is a rolling machine!! I can't set her down anywhere now without her being completely across the room when I get back! She's also spending a lot more time on her belly looking at things in front of her and out of reach - which I'm hoping will encourage her to figure out crawling. (no, scratch that. I don't want her to crawl.)
We're still working with physical therapy once a month to assess Ruthe's abilities and needs. She has been doing so much better since her last heart surgery! She has a lot more stamina during her workouts, which means we can push her a little harder for a little longer, and we get to see better results!! I'm actually supposed to decide if I want to bump her up to twice a month, or remove her from the NEIS system and get her physical therapy out in the community... it's a tough decision.
She hasn't had her palate repair surgery yet - we're still waiting on the hospital to schedule that. We're also waiting on a call to schedule her for another upper-GI scan that will hopefully tell us if she's having issues with reflux or why else she's been so vomit-y.
We did schedule her next heart cath - for the 27th. They need to get better readings from her pulmonary branches and either balloon them a little bit or place stents to open them up a little more. Remember when she had her first surgery and they put PA bands in? Her doctors are starting to notice in a lot of patients that afterwards those same spots are narrowing and causing higher pressures than they'd like to see. So the cath will be done to measure the velocities and try to correct the issue.
It's an out-patient procedure, but it will be an all-day affair. Once the cath is done and Ruthe wakes up, she has to be kept still and monitored for at least 6 hours. That means flat-on-her-back, no snuggling, and a very uncomfortable chair for me.
We've been so lucky to have John here this weekend! And he has been SO GREAT with Ruthe, allowing me to sleep in and take some incredible naps!!