There's no nicer title for this post. But let's back up to the beginning, while my awesome Grandma was here...
On Wednesday, Grace developed a little cough. No big deal, just a cough.
On Thursday, it was clear that she wasn't feeling tip top, but also not horrible. As the day progressed, she seemed to be getting a little worse. That night, after everyone went to bed, she threw up. Ok, problematic enough that first thing Friday morning, I called the doctor.
The nurse listened to me describe her symptoms (which were a semi-constant whining noise, a cough and lack of interest in food, but no fever.) The nurse said that if she didn't have a fever, and was still making wet diapers once every 6-8 hours, that there was nothing to worry about. But if either of those things changed OR if she started having trouble breathing, we should bring her in. She said that she probably had a little cold and that we'd have a few really bad days, but then she'd start feeling better. Ok, so I keep checking her temp-I only once got a reading at 99, never any higher. She ate less and less on Friday-by the end of the day, her grand total was 4 ounces. BUT she still kept making wet diapers, and the nurse had said I didn't need to worry about exactly how much she ate. She made this noise, constantly. Not like a wheezing sound as she breathed, but a whining sound. Anyway, we soldiered on through the day on Friday, figuring that this must be one of the bad days the nurse had talked about. Friday night, she woke up 6 times. Sometime in this haze of waking up, around 3 in the morning, I decided that if she didn't eat a real bottle in the morning OR if she was still making that whining noise, that I was going to insist on the first Saturday appointment they had.
7:00 Saturday morning. She won't eat. That was my bar, so I call first first thing. The nurse is a little poo-pooh-y about the whole thing because she STILL doesn't have a temperature, and is still making wet diapers, but I am insistent, so she says, ok, well I guess we can see her for possible dehydration. I didn't care what they saw us for, I just needed the peace of mind of a professional looking at her and listening to her to tell me that YES, we're still ok, nothing to worry about. This was a peace of mind appointment, people, nothing more. I knew the criteria the nurse had said, and she was still fine on all those counts, but I didn't want to go through another day like Friday without someone else telling me that we were fine.
My appointment was at 9:45. The nurse checked us in, brought us back, starts asking about the problem. I explained again all the behaviors I had seen. She says, "Do you mind if I look at her chest?" She cracks open Grace's jammies and her eyes widen a bit. She says, "Ok, let's check her oxygen. The oxygen monitor gets strapped to her little toe and then it all breaks loose. Her oxygen is at 80%. The nurse fairly RUNS out of the room, telling me she's going to get oxygen and a doctor. An oxygen tank, a doctor, and two nurses run back in-the little oxygen nose tubes are popped in, and they start to administer a breathing treatment. The doctor tells me that she's already called an AMBULANCE and that we'll be riding in it straight to the ER.
WHAT THE WHAT just happened??!? In like 10 seconds, the world exploded. This is a peace of mind appointment, people! NOT a freak out ambulance straight to the ER appointment. Of course, I start to cry. And then I feel SUPER bad because she was basically just the same on Friday, so if on Saturday, we're at ER levels, we should have been in the ER on Friday. APPARENTLY when they say "having trouble breathing," it doesn't mean something that your average mom (me) knows. You say "bring her in if she's having trouble breathing," and I think that means if she's gasping for breath or something. No, it means, if a tiny spot at the base of her neck moves in and out when she breathes or if her tummy moves up and down such that you can slightly see her ribs when she breathes. THAT's trouble breathing. Well, I hadn't spent much time studying what a normal breathing chest looks like, so I really had no idea what "trouble breathing" looked like. Uh, mom fail. Mom of FIVE fail. I've never had anything like this with any baby before! I had no idea.
Anyway, so we head in the ambulance over to the ER. Once there, we are dropped off in a tiny room, with her still connected to oxygen in the wall, and mostly forgotten about, as far as I can tell. We wait there for hours. No one comes when her breathing alarms go off. Occasionally someone comes in to take a nose swab or an x-ray, but we mostly haven't seen a nurse, a doctor, a call light, anything. I just sit there, holding my baby, bouncing in a two foot radius from the wall. Eventually, I send out a distress call to Jayna, who comes to stay with me and hold the wee babe for awhile. Ryan has all the REST of our many childrens, and is just waiting for word as to what he should do next.
Finally, a casually cocky ER doc comes in and says, "Well, she's got pneumonia and a collapsed lung, and we're admitting her to the hospital."
Uhhhhhhhhhhh okay?! He shows me the X Rays, where you can see that half of her right lung just isn't working. Now, when I hear "collapsed lung," I think that means that some trauma has occurred to force the lung to collapse. I don't know if that's ever true, but in this case, not. In this case, whatever cold she had created a lot of mucus in her lungs, and then it started to stick to her lungs, not allowing them to inflate completely. He said it looks like pneumonia, and the RSV test came back negative, so we're just going to give her two antibiotics shots in her little thighs while we wait for you to be admitted upstairs.
A few more hours pass before we make it upstairs and then another wide barrage of tests and exams and an IV, etc, etc. They take another nose swab, which is apparently more sensitive than the one that was taken in the ER, and tests for 10 different viruses. THAT one came back positive for RSV. So, now we've got a fine mix of RSV, pneumonia and collapsed lung. Great. By this point, it's about 6 pm on the last day of my Grandma's visit, I haven't eaten all day, so I send Ryan out for a few burgers before I take my place in my new world-which is part jungle, part space ship, and part sad baby. Jungle because of the SIX cords, tubes and wires attached to baby. Spaceship because of all the monitors-and the beeping. The constant beeping! And sad baby because obviously. She WAS. She has been such a sweet, easy baby her whole life. Easy to calm. Pretty relaxed. But in the hospital, she was DIFFICULT to calm. HARD to get to sleep. People kept poking, prodding, suctioning, poking, etc, etc, etc. She didn't have time to calm down from one thing before she got all worked up about the next. I spent ALL day rocking and bouncing and trying to help her feel okay. Mostly unsuccessfully. This is my new world, held within the 4 walls of a pretty tiny pediatric hospital room.
At this point, I make a little Instagram post:
"Ima be real honest. I've had better days." (See? Understated. That's how I am.) But later, I felt to add:
"I just realized that's probably not a very nice thing to post without any explanation… She was having trouble breathing, possibly pneumonia? But we'll be in the hospital for probably four or five days! UGG."
Saturday night, I was up literally. All. Night. By 4 in the morning, it had been about 24 hours of near constant holding, bouncing, rocking, trying to calm, and being unsuccessful. It was HARD. By 4, I was about to lose my mind. I paged my nurse and said, "I don't know what needs to happen, but I need HELP. I am about to LOSE MY MIND." The wildness in my eyes must have registered in his brain, because he was like, "Oh! Uh, do you want to take a walk?"
"Is that one of my options?"
"Yes."
"Then YES."
He called an additional nurse and the two of them worked for half an hour trying to get her to sleep. With the help of a Mamaroo (which is like the fanciest, awesomest baby rocker that I've ever seen, and which THEY called in when they realized how bad it was!), they got her to stop crying and drift off into a fitful sleep by 4:30. I hit my hospital bed and slept just as fitfully until 6 am. And by fitful, I mean, she woke every 10ish minutes, cried, then went back to sleep. By 6, she woke up and wouldn't go back to sleep. So I'm back up. (And the fitfulness on my part was that every time she woke up, I woke up, sat up, tried to figure out if she needed anything, then went back to "sleep." Also, I kept hearing a baby scream/crying. Like, constantly scream crying, and I kept sitting up, thinking it was Grace, but she was asleep, so I hit the pillow again, and abandoned the other mom to her awful nighttime fate. Half way through the next day, I realized that what I had been hearing in the night was the hiss and flow of her oxygen, and in my delirium and utter exhaustion, I heard the sound that I'd been hearing most of the day-a baby crying.)
Here's my Instagram post of the next morning:
"Hospital bitter beer face. This face means, "I will tolerate this treatment you are giving me-but only just." By the way, it's a cocktail of RSV, pneumonia and a collapsed lung. Yum! Drink up! #waitwedontdrink #doesthathashtagmakesense #dontknow #doesitmatter #didisleeplastnight #no #actuallynotatall"
(See, I try to be a little funny even in the most miserable situations.) So I'm now telling you that I got an hour and a half of BAD sleep, combined with the previous night when she woke up 6 times. It is NOT shaping up to be a great day. Plus, with Ryan at church, and knowing the church meetings he had that day, I knew that no reinforcements were coming until at least 7 that night... HOW to get through the day when my back is killing me, and she's fussier than she's ever been in her life, and she's attached to everything under the sun, so sometimes I have to call a nurse to help me get her untangled enough to even pick her up. Well, first things first. EVERY time a nurse or respiratory therapist came into the room, I said, "I'm sorry, please don't think I'm too bad of a mom, but I have GOT to lie down while you're here." Not that I could really go to sleep in the 20 minutes that gave me, but just being horizontal for a few minutes helped. Total triage. At one point, around noon, my good nurse came in. She was very sweet and supportive, so I laid down. And actually fell asleep. At one point, I woke up because I heard baby cry. I had my glasses off, but I saw my dark haired nurse holding baby. She said something like, "Don't worry, I've got her." All you needed to say-I'm back dead asleep.
An hour and a half later, I woke up. Put my glasses on and discovered that it was not my good nurse, but rather, my great visiting teacher. When she heard what had happened at church, she blazed over to the hospital as soon as she could. She held Grace while I napped and at the same time SAVED MY LIFE. Seriously. I could NOT have made it through the day without that nap. That, my friends, is a visiting teaching success story. A win. That's exactly how it's supposed to work. She saw a need and without waiting to be asked, she filled it. Michelle Price, bless you, woman. By the end of the day, my good nurse, with the encouragement of a really awesome little gal in the room service department, put me in the system as a nursing mom. Technically, I'm not, but they figured that since the hospital is supposed to provide the food for the patient, but they didn't carry the type of formula Grace likes, that they should probably feed one of us. So by Sunday night, I got more food than the bag of trail mix and box of cookies Ryan brought me the day before. And maybe it's just me, but food makes everything better.
Whether it was the advent of food into my little world or just time passing, things started looking up. Sunday night, I got her to sleep by 3 am (with the help of a different sweet nurse and a warm blanket!) She slept until 6:30 when the x ray techs came. (Curse them!) But the good news? I got her back to sleep. So then she slept from 7-9 when the respiratory therapist came in. Bah, whatever, we easily doubled the amount of sleep we got the night before, and the hospital brought me some scrambled eggs. Things are looking GOOD.
Instagram post:
"I want to kiss her but I don't want to wake her. She's so cute. Good news-she has responded well to treatments so far and her collapsed lung is coming back online. #getintheresoldier. And her pneumonia is now looking like regular RSV. Yay! Since when did we cheer for RSV? #itsatopsyturvyworld"
In comparison to Saturday and Sunday, Monday passed like a dream. My mom had arrived by that point, and my friend Karen watched Spencer so that she could come spell me. Jayna came later in the afternoon. Ryan came by at lunch and after work. Grace got a bath and was responding well. The hospital brought me a turkey sandwich. All in all, we were feeling pretty good about things.
"Girlfriend took a bath and lost her nose jewelry. #nosejewelryisforpunks. Currently she's only attached to two things, down from 6. 6 cords! Think of that! Trying to untangle a screaming baby from that nest of madness! Add in a fairly reasonable sleep last night and we are feelin' pretty good!"
Also, insert Hulk hand joke here.
By that night, a canny nurse suggested that perhaps we should take Grace off oxygen, to see how she did through the night. (I think she did this knowing that a baby would have to spend the night off oxygen before they'd let us go home.) Grace dealt with it like a champ, meaning that suddenly, we were down to just ONE cord. Her little IV. IVs in babies are approximately the saddest thing ever.
She kept trying to suck her fingers, or she'd accidentally knock her binky out with her big club hand. We couldn't hold hands like we normally do when she eats her bottle. Just sad. But still, progress!
Daddy helped get Grace to sleep that night, so we got to bed even earlier! I think it was some extremely early hour like 10:30 or 11, and she slept until 3 or 4. Truly luxurious.
In the morning, they let me know that since she had been successfully off of oxygen for the night, all she needed to do Tuesday was to eat reasonably well. Well enough that they could believe that she could survive if not attached to an IV. We dis-attached the IV for a trial run... and having a cordless baby? Was like the most miraculous feeling EVER!! The very idea that I could just PICK HER UP from her crib without having to navigate and untangle cords... that I could then walk the 4 feet to the edges of my tiny room? It was magical.
Again, from Instagram: "We have entered the 21st century because #cordlessbaby! (Get it? Because cordless phones?) I don't know if getting more sleep helps the hashtag situation or not... but regardless, she's 100% wire, tube and cord-free and we're stoked!"
And once again, Grace responded as well as she could have under the circumstances. She ate food and kept it down, so by the night, they decided it was safe to bring her home!
"#roomiesnomore #bringinggracehome #take2. Also, it takes a bit of bravery on my part to post this glasses/no make up pic of myself, but it is #hospitaltruth."
So now we're home and everything has mostly returned to normal. A few things that have not: Grace's sleeping schedule (but whatever it is is still better than some of those nights, so I'm not complaining!) Also, I have a newfound fondness for pajamas all day. I mean, I've always been fond, but I forgot how handy it is to wake up wearing the same things you're going to wear all day, and just get right to work, you know? Glasses, no make up, whatever. In the hospital, no one cares.
That brings up another thing. I think I left my room 4 times while I was there. I'm positive that I only left twice when no family member was there-briefly. Those times were in the wee small hours, and I just HAD to get out of that room. And each time, when I did, I saw other moms. Other zombie moms in sweats and glasses, just roaming the halls. I felt a kinship with these women-a certain camaraderie born of shared suffering. Though in some ways, I felt unworthy to join their ranks. I mean, we had RSV. Pneumonia. Collapsed lung. All things that heal up relatively quickly. Other moms there are dealing with cancer, and other unknown creepy things that keep kids in hospitals long enough to need the nice services the hospital provides-like school. I felt like part of a silent army, separated by our tiny hospital rooms, only passing each other with slight zombie nods at 4 in the morning. Nothing needs to be said. Moms sleeping in hospitals means kids sleeping in hospitals, and that's just never a happy situation.
On one of my forays out of my room, I noted a few things that amused me. These I must now share:
I'm sorry... am I missing something? Do not become alarmed, just use the button marked ALARM. Could we perhaps used any other wording? Please do not PANIC or please remain CALM or anything???
But then this little guy caught my eye:
I don't know why he struck me as so funny... maybe it's the odd details they included. Such as his hairline. And his sensible loafers. But even with such details on top and bottom, he still seems to be wearing mittens.
And this little friend was in my room-a little omen watching over me as I slept... or tried to.
You see it, right? Harry Potter fans? That was definitely a positive part of my stay.
Actually, to be perfectly honest, there was another positive part. Obviously, there were plenty of negatives, which I have detailed in the above mega post. But here was the unexpected plus: it was great only having one kid. ONE person to worry about, one person whose needs I need to meet, one person to talk to, reason with, comfort, etc. And then, when that ONE PERSON was taken care of? I was free! I mean, I was still contained by 4 tiny walls, but I felt free as a bird. I didn't have to remind anyone of anything, tell anyone to do anything, or follow up on all the things I already said to do, but that didn't get done. There was no driving, no Scouts, no cooking, no homework, no questions, no arguing, no discipline, no determining which kid is right in a dispute that I have nothing to do with... honestly, by the time I got out on Tuesday night, I felt-truthfully-like I had been on a mini vacation.
That is sad, right? That is SO SAD. But it's the honest truth. As we drove home Tuesday night, I felt weirdly relaxed. The HOSPITAL is a vacation for a mom of 5. Sigh. I think I need a real vacation. However, unfortunately, we will now be meeting our insanely high deductible for TWO YEARS IN A ROW, so we will never be able to afford a vacation AGAIN. Prior to last year, we have never met our deductible, but then double surgeries for Nathan and having a baby blew that out of the water. And now, a mere 4 months later, we are meeting it again? WHAT the? I mean, I had been a mother for SEVEN AND A HALF YEARS before one of my children even threw up. We routinely get the perfect attendance award because we're NEVER SICK. So now? To have SO MUCH MEDICAL in such a short time? It's cuh-razy. I don't even know who I am anymore.
It's been a week now since we entered the hospital, and now we're out, and every so often, I just stop and say, "Wait, what just happened??" Kind of bizarre. Anyway, thanks for listening.
