All right, let’s just do this.
At the end of July, we went to the doctor because Penny just didn’t… seem right. We’ve always gotten a lot of compliments on our smiley, happy baby and that baby seemed to be missing. There were also some diaper issues and feeding issues. At the doctor, we found that she was about the same weight as she had been at her 2 month check up at the end of June. We decided to try Zantac for reflux because it fit all of the symptoms perfectly.
We were to follow up in a week. During that week, Penny had what we assumed was a growth spurt – eating constantly and then sleeping. She was still having some eating issues, but other symptoms seemed pretty improved on the Zantac. When we went back to the doctor, though, we found that she had lost nearly a pound. Which was a problem.
However, since we assumed she had just hit a growth spurt, we decided to schedule another check up about a week out from there, figuring that maybe we actually caught her on a upswing of weight and she was gaining.
A couple of days into that week, I just didn’t feel that the improvements we had seen in the previous week on Zantac were still apparent. Eating issues, fussiness, general unhappiness – I don’t know, I actually kind of wrote it up to MY stress and moved her check up forward a few days.
We went in to her doctor last Wednesday and went over the whole story again, adding this time that while she had previously been able to lift her head and chest when lying on her tummy, she couldn’t do that anymore. That, combined with the rest of what was going on, lead the doctor to suggest that we get checked out at Phoenix Children’s Hospital. We were surprised to hear that, but even more shocked because we were expecting a referral to head down there sometime in the next couple of weeks but were instead sent directly to the emergency room.
Now, here we arrive at the part where I will be employing the Rumplerood Method, first seen here, where I don’t actually tell you any specifics of what was going on. This isn’t because I don’t like you, Internet, or anything like that. It’s that having specific medical details tends to make certain types of people (which is of course not you, Internet) make certain types of comments – prying questions as to why or why not doctors have done or not done this or that; stories of how their kid had the EXACT SAME THING (which turns out to not be the same thing at all) and all we NEED to do is X, Y, or Z; or reassurances of “Oh, that’s not a biggie,” which is the most annoying because, hello? Hospital? Very biggie, you asshole.
(Not you. Them.)
So we arrive at the emergency room and get taken back to a room relatively quickly, but there was a lot of waiting from that point forward. Once we saw a doctor and talked about what was going on, they decided to admit her before even doing any tests – her weight loss was just that severe and regardless of what came out of the tests, she needed some beefing up help.
So we shall call the weight loss Problem A, and consider it to be the main reason we went to the hospital.
Some tests and scans were run while we hung around in the emergency room, waiting for her room to be ready. Scan 1 was completely fine, but Tests 1 and 2 introduced Problem B and Problem C.
Off we went to our room.
You know, the days really blended together quite quickly. I stayed at the hospital with Penny the entire time and Phil went home in the evenings to handle the dogs.
So we’ve got Problems A, B, and C. Here’s where things started to get all kinds of messy. Problem A could easily be caused by Problem C, and Problem A could, sometimes, in some cases, cause Problem B. OR? All of the problems could be completely unrelated to each other and each a sign of much larger problems. OR? A and B could be related and both fall under C. OR? C could be its own random thing and B could be a HUGE THING.
Or? Also? Could be no big.
We saw doctors the next day who said, “Yeah, the thing is… Problem C, right? Well, it’s so unlikely that she actually has that that we need to run the test again. Because it’s just not likely at all.”
So Test 2 was repeated, and it was quite an unpleasant test for Penny. So unpleasant, in fact, that when they failed at it twice and wanted to attempt a third, I was all OH HELL NO, she needs to rest for tonight. This terrible nurse (all of the nurses except one were just fantastic) apparently wrote in Penny’s chart that I REFUSED the test and they had to scurry around finding an alternate method, which I did not realize had happened until I talked to the doctor the next day. I thought the nurse was just being nice to arrange this for Penny, but it turns out that SHE thought I was a huge bitch who was REFUSING medical treatment for Penny when all I said was to LEAVE IT FOR THE NIGHT. Twice is enough, you know? But I would have let them try again the next morning. Whatever, that nurse was a anal pimple. Doesn’t matter, though, because the doctor told me the next day that he didn’t blame me at all for stopping them.
Anyway, Problem C? The doctor was right, it probably wasn’t Problem C at all, but SO WEIRDLY? They discovered a second variation of Problem C that was definitely, definitely the case in a WAY HUGE way. They had already started treating for Problem C1 and the treatment was basically the same for Problem C2, so WHY EVEN REPEAT THE HORRIBLE TEST if the treatment WASN’T GOING TO CHANGE ANYWAY AAUUUGHHH.
That point is about where I started to lose my grip, but the hospital isn’t a great place for grip-losing (actually, it kind of is, because we got moved to a new room at one point, when Phil wasn’t there, and I had to re-unpack all of our stuff and Penny ALSO needed to eat and I ALSO needed to pump and she had a blow out (not to be a huge snot, but that has NEVER happened in cloth diapers and happened 80 berjillion times in the disposables at the hospital) and THEN she peed in her bed while I was changing her, and the nurses’ aides came in and bathed her, changed her and fed her while I got a shower and got to pump and was left alone for 30 minutes). Anyway, what I was saying was that I started to lose my grip but saved up all my grip losing to unleash on Phil on the drive home from the hospital yesterday because SERIOUSLY, there is just NO NEED to be in the farthest left lane THERE JUST ISN’T.
While Problem B could be a side effect of Problem A, it can also be a serious indicator of a large problem in its own right, so Test 3 was performed to checked for Very Serious Issue 1. And that test, which was a HUGE pain in the ass, completely failed. Penny didn’t fail the test, the test failed. Over the course of the next couple of days, every doctor we saw would tell us we either needed to repeat it or that we probably didn’t need to repeat it – whichever was the exact opposite of what the previous doctor had said. We will be repeating it, but on an outpatient basis, in a few weeks. Just FYI.
Somewhere in here, we also had Scans 2 and 3, for issues related to Problems C and B, respectively. Phil was present for both of those Scans, of course, as they were painless and easily handled with a pacifier loaded with sucrose. Oh, by the way, our baby is goddamned sugar fiend now.
Scan 3 was perfectly clear, which was great, though the results of Test 1 indicating Problem B still couldn’t be ignored. Scan 2, however, indicating that while Problem C sometimes just happens, it was possible that a bigger issue was at work and there would need to be a third kind of scan on Monday. Now, they were telling us this on Friday, which was aggravating, because COME ON. MONDAY. But it was absolutely necessary to do scan three to check for the potential Very Serious Issue 2.
Now, while waiting for Monday to roll around, Test 1 had to be repeated several times and — okay, you know what? Test 1 was blood work. Whatever. So, it of course had to be repeated, and every time they needed to do that, they tried to draw from her IV, which NEVER WORKED, and her IVs kept failing anyway. She had THREE IVs, and by the time we left last night, the last one had failed, too. It’s a good thing we were leaving then, because the next spot they were going to have to go for was the scalp. They had to call in the “IV Team” each time she needed a new one and take her to the whimsical “Treatment Room” to get them done (she had repeated episodes of Test 2 in there as well) and after a couple of visits, her entire body stiffened up whenever she saw the ceiling.
Eventually, Monday did roll around and with it so did Scan 3, which was pretty much entirely unpleasant, but luckily only because Penny was scared to be held down. Not that that’s a good thing, but I was confident that the procedure was relatively painless and her crying (and lo, there was crying) was because she was scared. Which, you know, knowing that your kid is terrified is bad, but slightly lower on the HOLY SHIT WHY DO PEOPLE EVEN HAVE KIDS IF THEY’LL JUST BE FORCED TO DO TERRIBLE THINGS TO THEM scale than terrified and in pain.
So, we’re checking for Very Serious Issue 2, and I was quite confident that we’d be cleared and sent right home, because you know how I feel about being average – that’s us. We’re average. She had Problem C, yes, but our Household Averageness would be protecting her from Very Serious Issue 2.
Apparently, Penny did not inherit the average gene.
Very Serious Issue 2 has varying levels of severity, from “hey, not so bad, if you’ve got to have it” to “well, this is pretty much no good.” Penny, choosing an obnoxious time to display a glimmer of averageness, falls right between “usually clears up on its own” and “almost always require surgery to correct” on the scale of Very Serious Issue 2 severity. However, there’s nothing we can really do but watch, wait, and medicate in a preventative manner while we wait to see if she grows out of it or needs some scalpel-ish interventions in the future.
All during this time, we were also working on weight gain, as Penny had dropped down below 9 pounds, and I am pleased to say that yesterday morning, she weighed in at 9 lbs, 14 oz. And then she peed on the scale, so maybe 9 lbs, 13 oz. It was actually quite a lot of pee, so let’s say 9 lbs, 12 oz and call it good.
OH, and yesterday morning? A doctor I hadn’t seen before came in and brought up another round of issues that arose from the blood work, which could be a thing or not a thing at all, but seemed suspiciously like a thing, though it could be a thing caused by Problem B or Problem C or an undiscovered Problem D which might have come and gone without us even NOTICING, or? OR? Could very well be Very Serious Issue 3 which we will ABSOLUTELY need to be looking into.
We’re at home now and I’m in between phone calls for follow ups. Every issue requires a different type of doctor. We’ll be going to her primary care doctor to follow up on weight and general health, as well as to repeat blood tests and look into the potential for Very Serious Issue 3.
We’ll be checking in with a set of specialists about Problem B and the potential for Very Serious Issue 1, as well as returning to Phoenix Children’s for a repeat of test 3, as it absolutely needs to be done at a center that has experts who specialize in performing the test, even though they did a SUPER CRAPPY JOB of it the first time (apparently, the test should have lasted twice as long as it did to get good results).
And of course, Penny will be seeing a team of specialists for Very Serious Issue 2, not just for a follow up next week, but several over the next year as well as one or more repeats of scan 3 and monitoring of her new medication so that we can keep an eye on it and hope it resolves on its own.
Some things about the hospital:
1. I developed a two slice a day chocolate cake habit, because the hospital cafeteria had FOUR DIFFERENT KINDS OF CHOCOLATE CAKE, you guys.
2. This is totally going to sound like a humble brag, but am becoming increasingly more awkward with people complimenting Penny. She charmed the pants off EVERYONE once she started feeling better (you guys – YOU GUYS, our smiley baby is BACK, which is awesome and also makes me feel TERRIBLE for how long I tamped down the “something’s wrong here” instincts in order to not be “that new mom” with the panic over nothing), and more than once, a new nurse came in and said, “They told me you were cute!” She was seriously complimented to her tiny eyeballs – it’s a good thing she doesn’t understand English, because she would have a big fat head. When someone says, “She’s so cute!,” I generally reply, “She thinks so!” Any ideas of better replies would be helpful, because look. I’m just going to have to accept it. I have a gorgeous baby.
3. I DO NOT WANT HELP WITH THIS, but since so many people asked if I’m still nursing – yes and no. Problem C is likely what caused Penny to lose so much weight, and with it, she lost a lot of strength. As she lost strength, her suck weakened, she at less often and for shorter periods, and that tanked my supply, so she had less to eat, so she lost more weight, etc, etc.
She’s being fed supplemented formula right now and I met with a FANTASTIC lactation consultant at the hospital and we’re working on increasing my supply again, but it’s probably not going to work. I’m allowed to nurse her one or two times a day and I pump the rest of the time. I am not going to go into a list of everything I’m doing in this situation, so you’re going to have to trust me that I HAVE IT UNDER CONTROL.
We’d like to go back to nursing. It might not happen. We’re all okay with that, because Penny’s health is absolutely paramount. Please. Do not suggest, because I’m telling you – did it, doing it, about to do it. Covered.
4. Gained four pounds from cake.
5. Look at her bare upper arm. Someone put a scratch on my showroom condition baby.
“It’ll buff right out!”
6. The last night we were there, I was jerked awake in the night twice by the little girl – maybe 5? – in the room next to us, screaming and screaming. I mean, HORROR MOVIE style screaming. Not crying. Not yelling. Freddie is at the door and his claw hand is DIGGING THROUGH RIGHT NOW kind of SHRIEKS. It was terrifying, for one, but for the most part, I just felt so awful for her. It was heartbreaking to hear a small child in such horrific pain.
But then the next afternoon? The truth came out. Not scared. Not in pain. HUGE BRAT who was REFUSING to take her medicine. Even our wonderful, sweet, overly kind and patient nurse walked out of their room throwing her hands in the air, telling the mother that she can’t do anything until she gets her daughter under control. This nurse, who didn’t even roll her eyes ONE TIME at me asking the same question over and over and over and was nothing but wonderful with Penny, washed her hands of that kid at that moment. So I got RETROACTIVELY FURIOUS about being woken up like that, for extended periods of “I am just a huge pain in the ass” 2am scream symphonies.
7. Thank you to everyone on Twitter, Facebook, here and in my email who took the time to let us know you were thinking of Penny and hoping for the best for her. I would totally say something like, “I read her every comment,” but I didn’t. I mostly continued with my usual pattern of singing her songs about her own butt and giving live commentary on shows on the Food Network (“That Penny is a bitch. She is not an accurate representation of what a Penny should be. You remember that.”). But I did read them all myself! And read some to Phil! So, thank you all. A lot.