Monthly Archives: April 2012

A good day!

Lucy is doing well this time around on the oscillator. They’ve been tweaking the settings, and her mean and amplitude could be a little lower, but she seems to be happy right now. Her CO2 levels were staying kind of high this morning, so the doctor was worried about infection and started her on antibiotics again. Since they can’t actually diagnose infection until the symptoms are pretty bad, they start antibiotics if there is any suspicion. But her white blood cells are not elevated, we’ll hear about her blood culture sometime tomorrow, and she’s not acting sick, so I hope she doesn’t have an infection. Also, her red blood cell count was a little low, so she had another blood transfusion. He still hasn’t done her PICC line, so she still has her umbilical central line.

But it was a good day. Her oxygen requirement has been fairly low – it was 25% when I left her tonight. She’s also been very active today, and the nurses took some cute pictures of her (I’ll post tomorrow). Her feedings are up to 3 cc’s every 6 hours (did I mention that already?) and still going well – no residuals. Also, she pooped all by herself, without needing a suppository. She pooped a lot, in fact. Once earlier, and her night nurse said she “had a HUGE poop,” which got all over apparently. Her first diaper blowout! And I couldn’t be happier about it! Of course, I don’t have to clean it up yet.

Another really good thing is that her bedsores seem to have just disappeared. They put a dressing on them that is removed after three days. So today, when her nurse removed it, she couldn’t find any evidence of sores. She called in the wound care specialist and the other nurses, and none of them could even see where the sores had been, only smooth skin. Ha, they said it was a miracle. Apparently my baby has miraculous healing powers, which should serve her well over the next few months.

During tonight’s visit we got a blood gas result back, and it was very good. The doctor didn’t want to make any changes to her vent, but she’s definitely doing better. After reading her a story, I left her happily thrashing around and going to town on a pacifier, which was pretty cute.

David went home for the weekend to help move, and I already miss him, but I managed to get myself from Memorial Hospital to Mercy Hospital without getting lost. He’ll be back Sunday. My sweet dad came and picked him up. And while I’m acknowledging help, here are a couple more: thank you to everyone who has donated leave to David so he can stay here with me and Lucy. It means so much to us. And thank you, Lauren, for giving us the means to have a sort of celebration/date night the other night. We had a really nice meal at Macaroni Grill, and it was nice to have a night out. And thanks to Walgreens. The managers of the area Walgreens come to the RMH to cook once a month, so last night we got some fantastic carne asada tacos. Awesome. And thanks to the numerous other people who have kept us in their thoughts and prayers.

There’s a fifth grade boy staying at the Ronald McDonald House for a few days. He’s a sweet kid, and precocious. Tonight as I was eating my salad, he heated himself a leftover hamburger, ate it, then announced that he was going to have some eggs. A minute later he asked me if he should use a certain pan, and then “soooo, do I just spray some Pam in it?” Okay, I realized this kid has no idea how to make eggs. So I taught him how to make scrambled eggs, showing him all the little tricks my dad taught me. And the kid produced some perfect scrambled eggs. He said “wow, I did a good job. Well, now I know how to make scrambled eggs.” I was so proud of him! And I can’t wait to teach Lucy stuff like that.

That right eye is still harder to open:

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She was squeezing mommy’s finger a second before this was taken:

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Daddy got to feed Lucy this morning before he left:

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And this is especially for Daddy to watch in the morning. This is how she was when I left her tonight. It’s kind of long; skip to a minute or so in if you want to see the way she was squirming (some might say spazzing out, but not me, because Grandma Olson reads this and she says I can’t say that).

Lucy, Day 23

All the ups and downs of living like this are exhausting. It’s like I’m suddenly manic depressive – when Lucy is doing well, I’m almost delirious with relief, but the minute anything goes wrong, or even if things are just not quite as good as we thought, I’m right back down into the depths of worry.

Lucy was doing well oxygenating on the traditional vent, keeping in the high 20%’s to 30%’s. But her blood gas levels weren’t great, and her CO2 levels rose off the oscillator (meaning her blood was becoming acidotic). So she’s back on the oscillator now. It’s not really a setback, because her condition didn’t worsen, so I’m not really more worried now. It’s more depressing than anything else, because we were expecting a step forward, and now we’re back where we were.

Other than that, not much has changed. She lost 5 grams, but that’s to be expected. She’s still feeding well with no residual milk in her tummy (still waiting on that poop, but you wouldn’t poop much either if you were only eating 2 cc’s every 6 hours, and they’re not worried about it). Today we had her isolette open again to kiss on her a little, and this time she was more awake. I was talking to her and she opened her eyes and stared straight at me. She has improved eye control, and can blink them together now. They also seem like they’re tracking together better, so they focus in the same direction most of the time. It still seems like it’s harder for her to open her right eye than her left, but that should improve. Anyway, she looked straight at me, and I could tell that she was looking at me and actually seeing me while I talked to her. And then she started sucking her thumb, and I started bawling because it was so cute and baby-like. So I didn’t get a good picture of it, because I was too busy crying, but we got some other cute pictures:

Her owl is watching over her.

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She’s sucking her fingers here:

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I see you Lucy!

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Also, yesterday two new micropreemies were admitted to our NICU, I think a 25 week and a 22 week. And they’re expecting another one soon. I don’t know their names or their families, but I’m keeping them in my thoughts, because I know how hard the next few weeks are going to be for them. (The 25 week baby didn’t even make it a full day on the traditional vent and is already on the oscillator, so I’m hoping especially that his lungs start working better.)

Lots of Firsts.

Last night David and I were confused about the doctor’s decision to put Lucy back on the traditional ventilator, and we’re still a little unclear. He said her oxygenation wasn’t a good indicator of her readiness, so he was relying on her blood gas levels. So despite her seeming increase in oxygen requirement, her CO2 was so low that he thought it was definitely time. And it seems like he was right, because she was doing really well today on the other vent. She had a few apnea episodes, during which her saturation dropped alarmingly, but for the most part she was on oxygen levels in the high 20’s to 30’s. Also, when she didn’t have apnea, she was initiating most of her own breaths, which seems promising to me.

She was weighed this morning and now weighs 665 grams, or a little over 1 lb. 7 oz. She’s had several feedings now with no trouble and no residual milk in her belly by the next feeding, so he’s increased the frequency to 2 cc’s every 6 hours. The neonatologist also decided that now is a good time to take out the central line in her umbilical cord and place a PICC (peripherally inserted central catheter) in her arm. I have mixed feelings about this. The umbilical cord is convenient because they can monitor her blood pressure, draw blood for labs, and give her IV fluids and medicine through it, all without causing her any discomfort. It eventually dries up, but it hasn’t yet. The advantage of the PICC line is that it reduces her chance of infection: any line has a risk of infection, but the risk increases with the length of time it’s been in use. Also, the arm, being more peripheral (hence the “peripherally inserted”), is less exposed to things that might cause infection. But to insert the PICC line, the doctor makes a tiny cut across a vein in her arm and threads the catheter from there, up her arm, through her shoulder, and into her vena cava, the huge vein above her heart. I guess that the benefits are clear, I just hate to think of them cutting my baby. Also, it means they will monitor her blood pressure with a teeny tiny blood pressure cuff, and that they will have to draw blood for labs from the heels of her feet. Anyway, that should happen either tonight or early tomorrow. Lots of changes all at once!

The most significant change for us was that they decreased the humidity in her isolette. That doesn’t sound significant, but it meant that they thought she was maintaining her body temperature well enough – and that her skin had matured enough – to be exposed to open air for awhile. And that meant that they were able to take the top off the isolette, take down the walls, and let us cuddle with our baby a little. We couldn’t actually lift her or hold her, but we could “hug” her, stroke her, and kiss her. I got to kiss my baby girl for the first time today, and nuzzle her little neck. I kissed her head and her belly and her shoulder and her knee, and I just breathed her in. By the way, Lucy smells like a newborn – albeit a newborn who hasn’t really had a bath in three weeks. At 6 o’clock this evening, I got to feed Lucy her 2 cc’s of milk. This is done through a tube into her stomach, but it was still nice to be the one feeding her. To be clear, these feedings aren’t really enough to provide many calories yet, as she still gets most of her actual sustenance from IV fluids. But we’re getting there.

We’re getting there. We’re starting to talk about kangaroo care, which is when a baby gets skin-to-skin contact with her parents, usually by lying on their chests. I can’t really tell you how excited I am for that to start. And when I asked how likely it is that she’ll have to go back on the oscillator, her nurse seemed pretty confident that she wouldn’t need to, unless she started to have unforeseen problems. We still have all kinds of worries and obstacles, but Lucy is doing well, and we’re thrilled with her progress. Her doctor, who is usually kind of a downer because of his insistence on making us aware of ALL the risks, was more upbeat than usual today. He said “the best thing about her is that she’s never seemed sick.” This distinction between sickness and general prematurity is a fine one, because Lucy is clearly not completely healthy. But she’s developing as expected for her gestational age and size, she’s active, she’s gaining weight, she has good color, etc. So she’s relatively healthy, and that’s as much as we can hope for. More even. Because the more I read about it, the more I realize that it’s amazing she’s alive, let alone doing so well. She was born at the very grayest end of the gray area of viability, both in terms of gestational age and weight. In most other places, they would have let her die. We’re so incredibly fortunate that we ended up here, where they were willing to give her a chance. Because she was clearly ready to take that chance and fight for life, and today at least, it looks like she’s winning.

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Yesterday, while the nurse is checking out the bedsores she developed on her back.

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The walls are down!

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Daddy and Lucy time.

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Mommy’s sweet girl.

3 Weeks Old, and Good News (I think?)

Lucy turns 3 weeks old in just about an hour, and every week – every day, in fact – feels like a victory. Today was a really rough day for me, though. Lucy was needing more oxygen than we hoped she would after the steroids, requiring 40-50% most of the day, compared to 30-40% yesterday. Everything else has been good, but she’s had some alarming (to me, not to her nurses) drops in saturation. At one point she fell to about 48%, which was really unpleasant for us to watch (her alarm goes off at 82%). So we were worried that she wasn’t doing well, understandably, I think, and I just cried off and on all day. And yet, when we went to visit her tonight after the doctor had seen her, they told us he’s taking her off the oscillator and putting her back on the conventional ventilator. They said her blood gas levels were so good that they thought she was ready, and that she’s trying to breathe over the oscillator. We’re confused but happy, because they obviously know what they’re doing, but I’m worried that she’s not ready and will be distressed and immediately have to go back to the oscillator. I guess we’ll see how she does, but they tell us this is a step in the right direction.

Everything else is going pretty well. Oh, except for two minor things: poor baby has a tiny scratch on her nose from who knows what, and we also discovered some bedsores at the top of her back. She can only lie in a few positions while on the oscillator because the tubing is so rigid, so she spends most of her time mostly on her back, poor sweetie. They’ll treat her sores, and hopefully if she can stay on this other vent they’ll be able to move her around more. But as I said, her blood gases have been really good, and she’s now had three feedings, I think. At first she was getting 2 cc’s every 12 hours, but since she tolerated it so well he increased to 2 cc’s every 8 hours. Hopefully tomorrow he’ll go down to every 6 hours. She hasn’t pooped yet, but she hasn’t ever had any residual milk in her tummy, so it’s being digested. Definitely a good thing. Breast milk decreases her chances of getting infections, helps her heal faster, will help her gain weight eventually, and decreases her chances of getting NEC, necrotizing enterocolitis, which is the next big worry. I’m producing just a little bit better, but I’m hoping I’ll have enough supply to keep her fed for the next few months, at least. Also, they increased the concentration of her glucose from 7.5 to 8, so if that keeps increasing it should help her gain weight too.

Tonight I’m hoping the doctors know what they’re doing and she does well on the traditional vent. We’re also keeping our fingers crossed that she continues to tolerate her feedings well – feeding intolerance is a major problem for micropreemies. If she can get through the next couple of weeks without getting an infection and she puts on a little weight, she’ll be in pretty good shape. Come on Lucy, you can do it baby girl. You have more people than you’ll ever know rooting for you, sweetheart. Mommy and daddy know you can do it.

And hopefully I will manage to make it to my orthodontist appointment in the morning, since I managed to throw away my retainers, the ones I have worn every night since I was 12, the ones I managed to take to Peru and bring back safely. I guess I’ve been a little distracted.

Last thing. When we were with Lucy earlier, her nurse tried to tuck her legs in to her Snuggie, and after the nurse finished her careful ministrations and moved her hand, both of Lucy’s legs sprang back out, straight up in the air, like “you cannot contain me!” Looking like literal springs. It was hilarious. As her nurse last night said lovingly, she’s a little stinker.

Slow News Day

But slow news is good news. Lucy received her last (please please oh please let it be the last) dose of steroids at 4 am this morning, and seems to be coping well so far. Her breathing hasn’t really changed much, at least, so that’s good. Today, except when she was irritated by diaper changes and prodding, her oxygen hovered between about 30% and 37%. If she keeps that up for a few days it will be good for her lungs.

She had her Monday morning labs, along with her near-daily x-ray. Her CBC (complete blood count) was good: good red blood cell count, good platelets, good hematocrit. Her blood sugar, as I hoped, fell right back down after she finished the steroids, so hopefully tomorrow they’ll increase the concentration of her sugar solution so she can keep gaining weight. Her x-ray was still good, so they started her feedings today at noon. For now she’ll get 2 cc’s of milk every 12 hours. The nurse said many babies have problems with feeding: fussiness, desaturation, etc., but that Lucy was a champ. She didn’t have any problems at the time of the feeding, and later, when her nurse checked her tummy for residuals (undigested milk, meaning she wasn’t digesting properly), there weren’t any. Yay, Lucy digested all her milk! Good girl! So she has another x-ray in the morning to check out her bowels and they’ll be looking for a bowel movement hopefully tomorrow. Again, never thought I’d be so excited by poop.

Our little sweetie stayed pretty steady on her oxygen today, but they had to slightly reposition her ET tube (endotrachial – her breathing tube), and they were having a few issues getting her positioned right with the new tube position. So when I checked on her tonight they had her oxygen turned up to 60% temporarily and were slowly bringing it back down. Her nurse thinks she’s got her head in a good position now and that she’ll come back down fine.

Lucy had some mommy time this afternoon while daddy ran some errands. I sort of cradled her inside the isolette, and she seemed to like that. She also seemed to be calmer and sat higher when I sang to her, so hopefully she likes that. When I moved my hands she sort of woke up and started stretching out. She’s definitely looking a little bigger.

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Lucy awake. I think the nurses are starting to think she might grow to be quite a handful. She’s willful and definitely has a mind of her own. In this picture she had just managed to bust her legs free of their soft prison, and she’s trying pretty hard to pull that lead off her chest. She darn near succeeded, too, before I said “Lucy! No no no!” and moved her hand.

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Lucy, Day 18

We were glad to get back to our little girl today, but also glad to spend some time with family. I didn’t even realize it, but we both needed that. It’s really hard when the two things I need the most are at odds: I need to be here with my baby, but I need some rest and family time too, which is pretty impossible to get here. Our families visit us here, but then we’re still planning our day around visits to the NICU and driving 20 minutes across Bakersfield.

Aside: we chose the worst day possible to drive home, though. There was a freak storm that put down a lot of rain, and snow through the Tehachapi pass. So in the middle of April, we were driving through pretty heavy snow. Go figure.

It was a good time to go, though. Lucy has been a champ. She was stable the whole time we were gone, and they’ve been gradually weaning down her oxygen. She’s now been pretty steady at around 34%, and was down to 28% at one point today. They still have to lower her vent settings a little bit more, but if she continues to do well, she should be off the oscillator and back on the traditional ventilator in a few days, probably. And that means we’re one step closer to being able to hold our baby, which is a very good thing.

Other than a blood transfusion – her fifth, I think – Lucy didn’t have any real changes today. (She gets transfusions to help replace what they draw for tests, and in this case, also to help treat some slight acidosis.) I always like to hear that nothing’s changed. Our goal is to do as little as possible, just giving her a chance to grow bigger. And she has! I just got off the phone with her night nurse, and she now weighs 1 lb. 6 oz., having gained 65 grams. Yay Lucy! Good girl!

A Day Away

No huge update tonight because we’re spending a day at home trying to relax with the family. It’s hard to relax when we’re this far away from Lucy, but being with family at home is a welcome break. Also, we got to see our new house for the first time since it became our house, and that’s exciting. Did we mention we bought a house? We signed our closing documents with a notary in the hospital.

Anyway, none of this would be any fun if Lucy weren’t doing well. Fortunately she had a pretty good day. She’s off the dopamine, she finished her antibiotics, and she’s been stable and requiring less oxygen all day. I think she might only have gotten three of the four extra doses of medium-dose steroids, and now she’s back to the lowest dose, for two more doses. We’re pleased that they’ve been able to somewhat limit her exposure to the steroids. She’s still being medicated fairly regularly for agitation/anxiety/pain/general squirminess, but she seems to be doing better overall, which makes us very happy.

We’ll see our precious Lucy Anne tomorrow afternoon. It’s been good to be home with family for tonight, but I can’t wait to get back to my baby.

Lucy, Day . . . 16?

Wow, the days are really starting to blur. Lucy was stable most of the day, and when we visited her in the morning she was going bonkers. She was kicking and punching and lifting her whole body off the bed, but not because she was in pain. She was just wiggling to wiggle. Our little Lucy is a mover, for sure.

She did have a bit of an episode this evening that worried her parents. Her oxygen saturation fell a little, but they couldn’t get it back up for quite awhile, even after they bumped up her oxygen to 100%. After half an hour on 100% oxygen, her nurse called the neonatologist. She said as soon as she called him, Lucy started doing better, but he was concerned that it was too soon to wean her to the lowest dose of steroids, so she’s back on the medium dose for two extra days. It’s not terrible, but a little disheartening. She’s back to being pretty stable, but she’s sensitive, so her night nurse is planning on keeping her cozy and letting her rest as much as possible tonight.

David and I were kind of planning to go home tomorrow, just for one night, because Lucy was seeming so stable. It’s impossibly hard to drive 2 hours away from her under the best circumstances, but it’s even worse when she’s having trouble. I was a basketcase leaving her tonight, even though I’m going to see her tomorrow morning, just in anticipation of leaving her for a whole day. There are a lot of weird emotions that you experience as the mother of a preemie. I won’t try to talk about what David’s feeling, but I experience a lot of strange, sometimes conflicting feelings throughout the day. I feel sad, obviously, because my baby came too soon, and no baby should have to deal with what she has already. I’m angry that this happened to her, and that my body betrayed me. And I’m angry that we’ve been cheated of a normal experience with our first baby. I had this vision of snuggling with my newborn in the hospital, breastfeeding, showing her off to family and friends, taking her home, being excited about normal landmarks, etc. We don’t get any of that, and even if we have another child, it won’t be the same. We will be taking care of Lucy hopefully, and I will be terrified the whole pregnancy.

Most of all, I feel guilty. I know logically that none of this is my fault, that it’s nobody’s fault, but it was my body that did this. There was nothing wrong, then all of a sudden everything was wrong. They say the most common causes of premature delivery are infection in the mother or problems with the placenta (e.g. placental abruption, when the placenta starts to come off, or just general unhealthiness of the placenta), or maybe the baby is not thriving. But none of that was the case this time. There is no explanation. Lucy was perfectly healthy in utero, and she’s only struggling now because my body ejected her. None of this is her fault.

I drove the 2 hours to see my OB because I was having pains across my lower abdomen and back. The on-call OB looked at me for 2 minutes before shipping me off to Labor and Delivery – I was 3 centimeters dilated and he could see the amniotic sack. I was in active labor. They tried to stop it – tipped me backwards, head down, gave me magnesium sulfate, gave me something else, but nothing worked. Then my water broke, and it wasn’t long before they were calling in the doctor and neonatologist. He looked at me, and within 10 minutes I was pushing, and then Lucy was here and gone without me even seeing her, and I was bleeding, and the doctor was hurting me, and it was all so confusing. It wasn’t the worst delivery, and I feel guilty about that too. People keep telling me that I have to recover and take care of myself too, but I feel like a phony. I mean, I delivered a 1 pound baby, and I’m completely fine now. Even saying I had a baby feels like a lie, because most people associate that with a much more difficult experience. I feel guilty that I’m not with her all the time, but it’s really difficult to manage, especially if we’re to get any sleep. She’s so much more important than sleep, but I can’t produce milk if I don’t get any sleep, and I can’t make good decisions for her if I’m too exhausted.

Mostly I feel guilty because there is nothing I can do. I’m a mother now, and I’m supposed to be able to take care of my baby, but all I can do is endlessly pump breast milk, and even that isn’t going that well. Every mothering instinct I have – to talk to her, to hold her, to feed her, even to touch her – is kind of off-limits right now. Any of it could cause her more trouble. If you’re a parent, I’m sure you already get this, but I would do anything for her. I would do anything, and I can’t do anything.

I know most of this is both irrational and normal to feel, but it doesn’t make it any easier. There’s nothing easy about any of this, but fortunately we have a lot of people helping us out, loving us all, and supporting us. We wouldn’t be able to handle it nearly so well if not for all of that, all of you.

Here are some more photos of printed pictures that the nurses took. Her first picture with both eyes open:

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The day before, when she only had one eye open, she was holding mommy’s hand.

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Her nurse took some pictures of her hands and feet. There’s no context, but her little feet are only maybe an inch and a half long.

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And here’s another little video of our spazzy Lucy with her eyes open. She looks cranky, but she’s really not, at least not here. She just looks like a little old man. She’s our little old man baby, and we love her so much.

Lucy, Day 15

Not too much to report today, which is a good thing. Lucy has been pretty stable. She’s getting a couple more doses of steroids, but now she’s on the lowest dose. They’re not going to try to feed her until she’s all done with the steroids. Her blood gases have been good, but I don’t think they changed her vent settings much today, if at all. She’s still on about 40-50% oxygen, but she hasn’t been desaturating too much.

Here’s a video from yesterday of her getting her mouth swabbed, which she likes. The stuff they use to keep her membranes moist is sweet, so she enjoys sucking on it and licking it.

Today she was very active, and her daddy and I got to swab her mouth for her! She liked it a lot:

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And guess who’s got both eyes open!

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She doesn’t have enough muscle control yet to keep her eyes pointed in the same direction, and she forgets to blink sometimes, but her mama is still excited to see her sweet eyes looking around. We love her more every day.

Lucy’s 2 Weeks Old!

I don’t think most parents would be so excited about their child’s two week birthday, but two weeks is a pretty major accomplishment for a 23 week preemie. I don’t know if I mentioned this before, but Lucy is barely a 23 week preemie. I was 23 weeks, 0 days when she was born, and every day in utero counts at that stage. But our little miracle baby is doing well at two weeks, against the odds. She’s breathing better after receiving some of the steroids, she has no bleeding in her brain (tonight I was told many babies her age have developed level 2 brain bleeds by now), her blood pressure and blood sugar are good, her heart rate is good, and she’s gaining a little weight. They weighed her on Sunday, and she was up to 560 grams, which is almost 1 lb. 4 oz. Not all of that is actual weight gain – some is just fluid retention – but maybe 30 grams or so is actual weight gain. That she’s gained weight at all by now is pretty impressive. Of course, she’s still having trouble breathing. Her ventilator settings are a little lower, which is good, but she’s still needing over 50% oxygen, and she still desats (her blood oxygen saturation drops) when they mess with her too much. At least her blood gas tests have all been good lately. And she tested negative for infection, so that’s really good news too. They haven’t started feeding her yet because they want to really make sure her breathing is under control. Also, the steroids can affect gut function, so if she starts to have digestive problems, they want to know whether it’s caused by the steroids or the feedings. AND, that child of mine pulled out her feeding tube again, but they didn’t have any trouble getting it back in. That girl is really good at pulling things out and off – tonight she kept pulling off her temperature sensor, making her isolette alarm go off, saying “baby too cold.”

It’s therapeutic for me to regurgitate what I learn about Lucy’s condition on this blog. I know it’s super detailed, but it helps me keep track of what’s going on and put everything in perspective. Our days and nights sort of blur together, and it’s hard to keep track of the time and when things have happened. So thanks for bearing with me and following along.

In other news, my dear Lucy has opened her left eye, and is desperately trying to open her right eye. I saw a tiny piece of it tonight. She looks all around now, and she spent a lot of time tonight pulling her eyebrows up as high as they would go trying to open the other one.

Here’s my baby earlier today. Of course she managed to get all her limbs out.

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Her tiny perfect foot:

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Trying really hard to open her eye:

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Squeezing mommy’s finger:

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And a kind of boring video that shows her eye open. She looks kind of stoned in this, because she kind of was. She’d just been dosed with her pain medication to calm her down a little, since she’d just had a chest x-ray and she’d had to be held down because she was squirming so much. So she looks a little funny with one eye open and her tongue hanging out, but she’s still my sweetie.

Today was a good day. Thanks for everything, everyone. Love to you all.