Monthly Archives: May 2012

Day 50

Today was a better day, for us and for Lucy. She started the day with much higher CO2 levels than she’d been having (70), so they decided to give her a few hours and try again. In the meantime, Dr. P thought her ET tube might have gotten some secretion buildup, so he decided to switch it out for a new one. Lucy tolerated being re-intubated well, but the tube was clear, so that wasn’t the problem. When they tested again, her levels were still high (63), so he turned her breath rate back up to 36. By the way, when I say breath rate, that’s the number of breaths the ventilator breathes per minute, but she can take as many breaths as she wants above that number. And when I say she was “riding the vent,” I mean that she wasn’t initiating breaths above that rate, and was allowing the machine to do all her breathing for her. That’s pretty common for now. Anyway, he turned her breath rate up to 36 from 33, which is kind of disappointing. While her overall pressure remained at 21 (that’s PEEP plus PC above PEEP, if you recall), he switched PEEP from 6 to 5 and PC above PEEP from 15 to 16. I’m not sure why he turned one up and one down. I know PEEP is the pressure that remains in your lungs after you’ve exhaled to keep the alveoli from collapsing, and that 5 is the pressure we all have, so that seems like a step in the right direction. But PC above PEEP is the pressure the ventilator is using to inflate her lungs, so increasing it seems like a step in the wrong direction. I’ll have to try to find out more. She had another blood gas test at 9:00 tonight to check her progress with the new settings, and her CO2 was 36, which is really good. The child can’t make up her mind.

Her platelets were back down to 19 today – very disappointing. I know we won’t be able to completely get a handle on the platelet situation until the yeast infection is cleared, but it’s still a bummer every time I see them go down. If they’ve gone down much more tomorrow, she’ll probably need another transfusion. As it is, her hematocrit was low, so today she got a red blood cell transfusion, and she’ll have another tomorrow. The only thing of note about the blood transfusion is that she received it through her PICC line. That isn’t usually done – it’s usually given through a peripheral IV instead of the central line – because blood can clot the line. In this case, though, they were burning through peripheral IV sites, and Dr. P decided that they need to preserve those sites for when they remove the PICC line. Otherwise they’ll have no way to administer antibiotics, TPN, antifungal, and transfusions once the PICC line is gone. Poor Lucy has a bruise on the back of one of her hands from repeated stab attempts. Again, I blame low platelets for that.

On the positive side, she didn’t seem to be having nearly as much trouble today. She now weighs 1260 grams, or 2 lbs. 11.5 oz. I got to hold her doing kangaroo care for an hour today, the longest I’ve ever been able to hold her. It was so wonderful. She fell right asleep again, but every once in a while she would turn her mouth to my chest and open and close it, then she’d fall back asleep. She was drooling on me, too, and I suspect it won’t be the last time she does that. She tolerated the whole experience really well, except for a brief desat when her tube got pulled out a little. I love that little girl so incredibly much. Hopefully next time I’ll be strong enough to insist that daddy hold her first so he gets a chance.

Lucy cuddling with mama:

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Back in bed, all tuckered out. Look at the size of that diaper! She’s outgrown the smaller size, so she finally moved up, but it’s huge on her. (The first diaper was a Pampers size Preemie XS, this is just a Preemie S, haha.)

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Close up! She was so peacefully sucking her pacifier. Her skin often looks flaky like that – it flakes right off during baths. Don’t worry, it’s normal.

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Waking up a little bit. Look at that hair! You can’t see it here, but it definitely looks like she has blue eyes. Whether they stay that way remains to be seen.

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Waking up even more. She’s saying “Mom! Stop taking so many pictures!”

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Now she’s just getting fed up:

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“Alright Mom, I’ve had it. Enough is enough!”

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Thus ends today’s episode of the Lucy show. The other Lucy show, anyway.

Day 49, Lucy is 7 week old

In an hour Lucy will be 7 weeks old, or 30 weeks gestational age. It’s hard to believe we’ve already been doing this for 7 weeks, but at the same time it feels like forever. At this point it feels as if our lives have always been like this, and will always be like this. Most days it’s a good thing – one day at a time, and all that – but some days, like today, it starts to wear you down. It wasn’t a particularly noteworthy day, but we’re both so tired, and it doesn’t feel like we’re making much headway. I know that every moment nothing goes wrong for her is a good moment, but I’d just like to see her actively improving. And when we were sitting with her tonight she seemed like she was having more trouble breathing, riding the vent (not initiating any more breaths than the vent was already breathing for her), and requiring a lot more oxygen. (I just talked to her nurse, and she’s been able to wean her since we left. Lucy’s just been very sensitive to touch and stimulation today.)

Don’t get me wrong, today wasn’t a bad day. Her feeding is being maintained at 3.8 cc’s per hour, and none of her vent settings were changed (her blood gas this morning was better than yesterday, though). She actually lost weight since yesterday, but I actually think that was poop weight. Her tummy was a bit more distended today, but not much, and she is eating more than ever. She didn’t have a CBC (complete blood count) today because her platelets were good enough yesterday, so I’m not sure how that’s going, but she’ll have one in the morning.

I’m still pretty worried about NEC. I forgot to mention that Dr. P says the highest risk for NEC is between 30 and 34 weeks gestational age. Of course he tells me this 2 days before she hits 30 weeks. Actually, I’d already read that, but the causality is not quite clear to me (or anybody else, apparently). Statistically, most premature babies develop NEC between 30 and 34 weeks, but is that because our cells have a biological clock and something happens at that point? Or is it because, of premature babies alive at 30-34 weeks, statistically most of them will have been born closer to 30 weeks than 23, and those older babies are just starting their feedings at that point? There does seem to be a pretty clear correlation between beginning feedings and onset of NEC in many babies, and at least Lucy has been eating well for weeks at this point. I won’t stop worrying until she makes it another month and a half or so, though, and then I’m sure I’ll just be worried about other things.

I sure said a lot for not having much to say, didn’t I? I wish I’d taken pictures of her earlier, she looked so sweet, but I was too busy holding her hand. Tonight she was too sensitive and I didn’t want to disturb her. Hopefully I’ll have some more tomorrow. Now to pump, then off to bed I go. For a couple hours anyway.

Day 48

First, some things I forgot to mention yesterday. The first is that Lucy pulled out her OG tube (feeding) two times yesterday morning. Her nurse said she’s just learning to be assertive. Heaven help us during her teenage years, if that’s the case. Also, I realized that in one of the pictures I posted you can see that her cheek is bruised. Actually both cheeks are bruised, and that’s from having the tape around her ET tube changed. In addition to the tape itself pulling, they have to hold her face and tube pretty firmly while they’re doing that, and having platelets below 50 increases cutaneous bleeding like that. So she has these sad dark red little bruises on her cheeks, poor sweetie.

I also forgot to address the yeast infection/platelet situation. She had a blood culture on the tenth, and it was still positive for yeast, not surprisingly. Fortunately, the kind of yeast she has (Candida parapsilosis) is not one of the more resistant strains, and so far hasn’t shown any resistance to her medicine, caspofungin. She received a platelet transfusion on the eleventh when her levels were at 15, and on the twelfth they had only risen to 17. By yesterday they were at 14, so she received another transfusion. Today, though, they were 37, which is still way too low, but she hasn’t broken 30 since the onset of her infection, so that’s really good. Keep your fingers crossed that she has good numbers tomorrow.

Today was mostly uneventful in a good way. Her belly was less distended, measuring 24 cm (was 25 yesterday and 26 before), and it was softer also, despite resuming feedings. She consistently had about 3-4 mL of residual milk in her tummy, which I guess they didn’t think was a problem, because they increased her to 3.5 cc’s per hour early today (the highest she was at before was 3.2), then by tonight she was at 3.8 per hour. Her doctor is aiming for having her PICC line removed within 2 weeks probably (hence the rapidly increasing feedings), which should help to clear her infection. Our little chunky monkey gained 50 more grams today, putting her at 1230 grams, or 2 lbs. 11.5 oz. Most of today she seemed pretty happy, but they changed her tape again this evening and bagged her to help her breathe the whole time. She really doesn’t like that very much. Her blood gas today was just average, and they didn’t make any changes to her vent settings.

We talked for a while with her other doctor (she mostly alternates back and forth between Dr. P and Dr. K – now she’s on Dr. P) about how she’s doing. I mentioned my chat with Dr. Christensen to Dr. P, and it turns out he knows him well, having served his residency under him. He also seemed impressed at my research and understanding of the subject. I’m not really impressed with my research because of how much I now know; of course I want to know as much as possible about her condition, but they know waaay more than me obviously. I am pleased that I seem to have made headway with her doctors. I want them to know they can give me a complete picture, and that I’m capable of having a low-level conversation with them about somewhat complex things. I feel that the more they talk with us, the more we will be able to develop a relationship with them. This is just a small thing I can do for Lucy, maybe.

Anyway, that’s all beside the point. Dr. P seems to think she’s doing fairly well, and that this yeast infection is her most serious problem at the moment. He plans to increase her milk intake to at least 70% of her full nutritional intake (we’re at about 63% right now), then remove the PICC line and finish administering the antifungal via alternate routes, either peripheral IVs or orally (because the infection just can’t clear up completely while she still has the central catheter). Unfortunately, caspofungin must be delivered directly into the blood, and I think it might be one of the medicines that is not recommended for peripheral IVs (although I’m not sure about that). Dr. P thinks we might be able to switch back to fluconazole at that point (to which this variety of Candida is not resistant, and which has excellent tissue perfusion), and fluconazole can be administered orally. Otherwise she will need a new peripheral IV every 3-5 days, which sucks but is still better the central line. All Lucy can do is grow and put on weight, and she seems to be doing those pretty well, at least. I also asked him about how her lungs are doing, and he thinks she’s improving. He made an interesting observation that I found reassuring, which was that some of all this weight she’s putting on is new healthier lung tissue, so just growing and increasing feedings should help improve her breathing. That’s a pleasant thing to think about.

Whew. Thank goodness for days with little drama. Today we were able to just enjoy our baby, although still not exactly how we’d like to. She was just resting today, and looked completely angelic. NOT like the kind of feisty baby who would pull out her feeding tube twice in one morning and exasperate her nurse!

A note on appearances. We think she’s beautiful and perfect, of course, but preemies experience some things that make them look a little different. One thing is that they tend not to catch up in length/height for a while, so they usually look shorter and fatter than term babies. A lot of times it looks like they have no neck, and it seems like Lucy might be headed in that direction. She should probably catch up pretty much by the time she’s 2, but maybe before. Also, long-term NICU preemies develop something called “toaster head,” which means their heads become long and narrow. This is because they end up with their heads to the side most of the time (despite the fact that they turn them regularly). In utero their heads are free to shape themselves normally sans gravity, but in an isolette, especially if they’re on a ventilator, they are almost always on one side or the other. And if they lie on their backs too much they get a flat head. Also, if you spend a lot of time on one side of the isolette, they turn toward your voice, so often one side is worse than the other. In Lucy’s case, even if they try to stabilize her head so that she’s lying on her back for a while, she still manages to turn her head to the side, and it’s starting to show, I think. If it doesn’t get too bad, it might correct itself, or she might just end up with a longer, narrower head than she might have otherwise. Oh well. My point is, don’t feel bad if you see some of my pictures and think she looks kind of funny. Because she probably does. But that’s okay, she’s got more important things to think about at the moment, and she’s already 100% perfect to us.

Now pictures. She was sleeping so peacefully on her tummy this afternoon. You can see the bruise on her cheek.

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With her owl keeping her warm. Note the neck roll! She’s looking so chunky, I just want to eat her up! (And the nurses made her bed with one of the blankets Aunt Brittany gave us.)

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It’s been a while since I thanked all of you readers for continuing to share this journey with us and for keeping our Lucy Anne in your thoughts. We’re fortunate to have so many good friends going through this. Love to you all.

A BIG thank you

This thank you warranted its own post, but it’s taken me a couple days to get around to it. Last Saturday David’s coworkers from the Office of General Counsel drove all the way to Bakersfield with an entire kitchen’s worth of tools and groceries to make us dinner. These people are serious about food, too! It was a fantastic meal from start to finish, with nice weather for eating outside and definitely good company. The Ronald McDonald House has rarely seen such a feast!

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We had spaghetti with meat sauce, a fresh salad with vinaigrette, a caesar salad with homemade caesar dressing(!), grilled chicken, oven roasted asparagus and brussels sprouts with parmesan, and a perfect fruit salad with strawberries and pineapple. Not pictured are the the delicious pork and shrimp dumplings Geoff was churning out for appetizers, made from a secret family recipe. Also not pictured are the double chocolate cookies and apple-date pudding with walnuts that Sierra made for dessert (served hot with ice cream, duh). They brought enough to feed an army, too, so we’ve had plenty of leftovers. (I ate the rest of the brussels sprouts for breakfast this morning.) Steve and his very sweet, well-behaved son even brought me Mother’s Day flowers, making me feel very loved.

Can you believe these people? They are so incredible, and we are so lucky to have them as our friends. So to all of you – Geoff, Jennifer, Char, Val, Steve, Chris, & Sierra – thank you so very much. We love and appreciate you guys.

My first Mother’s Day, and long catch-up post

Well, Mother’s Day started a little rough. Here’s the big drama of the moment (aside from the yeast infection and platelet situation, of course): Lucy’s belly has been distended for days, but her feedings were stopped yesterday because it had gotten a little worse. Her tummy was swollen and shiny, so they were letting her intestines rest, hoping it would go down. It didn’t really go down, and in fact became even more distended, so we were starting to panic about NEC (necrotizing enterocolitis). If you recall, NEC is a sort of mystery ailment fairly common among preemies where part of their intestines die. It can be devastating, causing death or severe permanent impairment (although not in every case, especially when caught early). It’s not certain what causes NEC, only that the chance of getting NEC is inversely proportional to gestational age at birth and birth weight, both of which put Lucy at a severe disadvantage. Babies given breastmilk have a much better outlook, but can still get it. They speculate that a preemie’s immature intestines have insufficient wall coating and good bacterial flora, so that when they start to feed, it’s easier for bad bacteria to colonize in the intestines, break into intestinal walls, and eventually perforate the intestines. This lets the bacteria into the abdominal cavity, causing systemic sepsis, and if NEC progresses this far, it requires surgery to treat. Also, blood is often shunted away from the intestines in preemies, depriving them of oxygen and increasing tissue death. Obviously the worst outcome here is death, but if part of the intestine dies and needs to be removed, it can cause lifelong feeding and absorption issues, and potentially brain-damage and severe incapacitation.

All of that, while technical, is overly simplified. They don’t really know what exactly causes NEC, and I don’t understand all of the details. Basically, it’s bad stuff. And now that I’ve freaked you all out, let me just say that her doctor doesn’t think she has it and is not worried about it at the moment. As I said before, her belly is still pretty soft, she never had funky residual milk in her tummy, and she was still pooping, all of which are good signs. We didn’t know that the doctor wasn’t worried last night, though, and when we were with her she didn’t seem to be doing that well. She had a few A’s and B’s (apneas and bradycardias – drops in her breathing and heart rate, respectively), and was squirming, grimacing, and seeming really uncomfortable. She was throwing her head back alarmingly, messing with her endotracheal tube, which also affected her breathing. It was stressful, and we were both worried sick by the time we left her. I hardly slept last night between nightmares, pumping, and constantly waking up to call the NICU.

Things looked better today. Her abdomen is still distended to the same size, but it’s softer and she seems more comfortable. Her breath rate was lowered today again because her blood gas was good (unlikely to happen if she had NEC), and her belly was softer. The doctor examined her and reassured us. He also restarted her feedings, slowly, at 2 cc’s per hour. This is good, even while she’s still a little swollen, because being on TPN (IV nutrition) alone is hard on her liver.

Speaking of breast milk, (feel free to skip this over-sharing part!) I started taking Reglan to see if I could increase my supply, even temporarily. I started it yesterday, and so far haven’t noticed any major changes. One of its known side-effects is depression, but last night I was thinking, what would depression look like at this stage? Because if Lucy keeps this up, it might be hard to tell if it’s drug-induced or Lucy-induced. Like I said, though, today was better.

Ultimately, I had a very nice Mother’s Day. Lucy was already doing better when I called this morning, and then we had a Mother’s Day brunch at the Ronald McDonald House. Crepes (mine were nutella, strawberries, and banana, yum!), waffles, eggs, sausage, and chocolate-dipped strawberries. It was an amazing spread. Next we visited Lucy, and the head of the NICU gave me a Mother’s Day gift! So sweet! Back the the RMH for a nap, then back to the hospital, where I got the best gift of all: I got to hold my Lucy, skin-to-skin, for half an hour. It felt so amazing to feel her weight against me (she was much bigger than she was last time!), and she was so good! Her oxygen was lower than it has been for the past few days (FiO2 34%), and she was sat-ing in the high 90’s the whole time. She had been wide-awake when we started, but after rooting around trying to suckle for a minute, she feel peacefully asleep and we just cuddled. It makes me tear up remembering.

Lots of big changes to report today! Last week she had fallen out of the third percentile in length, but this week she’s back in it. They measure her weekly, and two weeks ago she’d only grown an eighth of an inch. Last week she’d grown a quarter inch, but this week she grew an inch and a quarter! No wonder she was looking bigger all of a sudden! That puts her at 14 1/4 inches, which is actually very close to where she’d be if she were still on the inside. Her head circumference increased as well, keeping her in the third percentile (that sounds low, but is pretty much expected of a micropreemie at this point). Her weight increased dramatically this week as well. As of this morning she weighed 1180 grams, or 2 lbs. 9.5 oz. Remember how long it took her to get to 2 pounds? Geez, she gained over half a pound in just a few days.

I just spoke with her night nurse. Her blood gas this evening was good, so no changes to her ventilator settings. Her FiO2 is about 37%. She checked her milk residuals, and they were low so they’re continuing feedings for now and decreasting the TPN. And she pooped! I’m actually even more excited about poop than I was before since being scared about NEC.

Anyway, that’s my good girl. I’m so blessed to have a daughter like her, and I’m looking forward to many more Mother’s Days with her.

This is Miss Fuzzy Bath Head yesterday. It looks like her eyes really will be blue. Her doctor says it’s entirely possibly that they’ve started to acquire pigment already.

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This is what happens to her ears when she’s on one side too long. Don’t worry, they straighten out fine.

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Here’s baby crankypants (channeling daddy) getting her oral care. She loves oral care, but she doesn’t love the bright light. Here you can see her distended tummy pretty clearly. Isn’t she chunky?

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And here’s the Mother’s Day card the nurses made me.

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Just a little video of Lucy looking around and getting the hiccups. Probably not that interesting to anyone but me.

Hiatus

It’s gotten to be way too late for me to try to do a whole post tonight, so I’ll post sometime tomorrow when I have more information. Lucy was doing okay when we left her, but she seems to be having kind of a tough time after what we thought was a pretty good day, so we’re a little worried. I’ll find out more in the morning.

Also – and this is just a precursor to the detailed acknowledgement I’d like to give to them – a huge thank you to David’s coworkers for driving all the way to Bakersfield to visit and cook us a truly fantastic meal. You guys are really good friends, and we’re both lucky to have you all in our lives.

Day 45

First, thanks so much to everyone who offered advice about the clogged duct. I tried a few things, but mostly heat and massage with regular pumping, and it seems to have mostly cleared up.

Lucy’s platelets fell to 15 today, so she had to have another transfusion. I spoke to her doctor about it and was reassured by what he told me. They’re trying to avoid platelet transfusions as much as possible (and follow the protocols devised by the Dr. Christensen with whom I spoke yesterday), but the risk of catastrophic bleed at numbers less than 10 is too great to ignore. Although she was in the teens, she would have fallen below ten by tonight probably if not for the transfusion. It’s not a great relief to know that the transfusion is the best option when it’s not really a good one, but at least I know that their priorities are the same as mine, and of course they know all I know and more. Lucy’s doctor was familiar with Dr. Christensen, and when I mentioned him and said “you’re familiar with him?” the doctor replied “Familiar? He’s famous! He’s a famous hematologist and neonatologist.” So I’m even more impressed that he called me back so quickly and was so generous with his time. Anyway, when I brought up worrisome studies about outcomes of babies receiving many platelet transfusions, Lucy’s doctor pointed out an obvious point: those studies don’t take into account the underlying cause of those babies’ platelet deficiencies. As he said, a baby with a yeast infection that will clear itself up in time will probably have a much better outcome than a baby with something that is attacking their bone marrow (therefore diminishing platelets at the source, rather than post-production, as with yeast), and who is much sicker. Does that make sense? Basically, what I took from our conversation is that Lucy has a better chance of avoiding those terrible outcomes despite the many platelet transfusions because she’s not a very sick baby otherwise.

Other than the platelets, not too much changed today. Her feeding remained at 3.2 cc’s per hour because she’s occasionally had a little bit more residual milk. Also, her tummy still seems a little distended and firm. Both blood gas tests today were good and she had her breath rate decreased twice, from 40 to 36, then from 36 to 33. Hopefully she tolerates that well – we’ll see in the morning. Her various ultrasounds yesterday were clear of new yeast colonizations, which is definitely good. The ventricles in her brain are still slightly enlarged, but nothing to worry about, and all of her other organs look good.

Lucy is looking so much bigger all of a sudden that it amazes me. Although she’s still the smallest baby in the NICU, she’s currently at 1075 grams, 2 lbs. 6 oz. When I nuzzle her cheek she sometimes tries to turn her mouth to my face, and yesterday when I was cuddling with her I could hear her trying to vocalize (she can’t because the endotracheal tube blocks her vocal cords. Otherwise she’d be able to coo, cry, all the normal baby stuff). I spent awhile tonight just memorizing all of her features. I can’t wait until I can see her unobstructed by tubes and wires and tape.

Here’s a picture a nurse took from a few days ago, and I think it’s hilarious because she looks so skeptical, like “why do I need two bows on my head?”

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And this is from the day after, and she’s missing a bow. She tends to rip those things off and throw them across the isolette (side story: her nurse one day wrapped her foot with gauze and tied it in a loose knot after removing her IV. The nurse turned aside for one second, and when I looked back in at her she had the gauze not only off her foot, but a good few inches above her head on her bed. She’s really good at getting things off her feet.)

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And a sweet little collage made by two of her nurse-mamas of her getting her first bath from mommy and daddy.

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Last, a blurry photo from today of David kissing his girl, who is very kissable these days.

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Day 44

We had a pretty slow day today. Not too much changed for Lucy, which is good. Her platelets were at 24 this morning. That’s still very low, but not low enough to need a transfusion, and that’s all I’m really looking for at the moment. Her blood gas this morning was good (CO2 53, up a bit), and this evening it was better (CO2 44, everything else in normal range). Today there were no changes made to her vent settings or feeding, but she hasn’t had too much residual milk, so maybe they’ll increase more tomorrow. Her tummy is a bit distended, but they don’t think anything is really wrong so long as she’s pooping well (the kid sure knows how to do that!) and her residuals are normal. Her nurse says she’s tolerating her care better (care consists of diaper changes, bed changes, mouth swabbing, suctioning her mouth and lungs, switching her position, and changing the leads stuck all over her torso, among other things), not desat-ing as much, and coming back more quickly when she does. She’s also requiring a little less oxygen (the oxygen they give her is FiO2 and is measured as a percentage, whereas the oxygen they measure in her blood is PiO2, and is measured as a partial pressure, in case I ever refer to those different measures). She seems to be very slowly improving.

Last night she saw the opthalmologist for the first time. He was checking for ROP (retinopathy of prematurity), which is when the blood vessels in the eye don’t develop normally, and can cause blindness, lazy eye, etc. The risk of ROP increases dramatically with increased platelet transfusions. He said it may be too early, so he will reevaluate later, but right now he couldn’t find any ROP. That’s good news.

Today they were re-checking her for end-organ dissemination of the yeast infection, i.e. checking her major organs for new yeast colonizations. They did another head ultrasound and others (not sure which this time, but probably repeated her bladder and kidneys, and possibly looked at her liver as well), and we should know what those turned up tomorrow. As long as her infection persists they will re-examine her every 5-7 days, I think, to make sure it’s not spreading. They did another blood culture (haven’t heard back yet – yeast takes longer than bacteria to test positive in a petri dish, I’ve read), and I fully expect it to show that she still has the infection. This kind of infection can take as long as months to clear, and I don’t expect them to be able to make much headway against it until they can remove her PICC line and ET tube.

She is gaining weight pretty rapidly now, since she’s been getting more significant amounts of breast milk. Today she gained another 40 grams, I think. If that’s all real weight gain, she now weighs 2 lbs. 7 oz. She looks noticeably chubbier almost every day, and her mommy spent a certain amount of her Lucy time today nuzzling her double chin and kissing her rosy round cheeks. Lucy didn’t seem to mind one bit. I think maybe she likes us a little.

I had my 6 week postpartum checkup today, and everything was good. Well, one thing is kind of not so great. This might be too much information, but I have a clogged milk duct, and it hurts like crazy. Anybody ever had one of those? Any miracle cures? I’ve been using a hot compress on it before I pump, and that seems to help, but it’s very painful and I seem to be producing even less milk than usual. I’m sure it will clear up soon.

Okay, here are a few pictures of our chubby Lucy, who’s looking remarkably like a real baby now. Here she is yesterday. She flopped that foot out no matter what we did to keep it in. She’s stubborn like that. (Side story: when she’s on her stomach and awake, she has to be watched because she can lift her whole head and torso up off the bed, then she smashes her face straight down and kinks the ET tube. How is she strong enough to do that?)

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Holding hands with mama:

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Sweet little feet. Still tiny, but not as tiny. The bandaid is from the repeated pokes she gets in her heel to draw blood for all these tests.

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This one is old, but I think the picture is so sweet. It is also so sweet that the nurses do this kind of thing. David was there when they were working on it, and he overheard one nurse asking another “Do you think one owl is enough?” Haha, they’re so cute.

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Lucy, sweetheart, you are in very good hands. Mama and Daddy will be forever grateful to the wonderful people who take care of you. We wish we could be the ones taking care of you, but since we can’t, they are definitely the next best thing. They love you too, you know. You’re pretty hard not to love.

A research day

This morning Lucy’s blood gas was pretty good (CO2 47), and mostly everything else was pretty good too. They turned her breath rate down to 40 (from 45) and her feeding up to 3.2 cc’s of milk per hour. Her TPN (IV nutrition) was decreased a little accordingly. She handled the increase well – at first she had 5 cc’s of residual milk in her tummy, so they stopped for an hour then continued, and at 9:00 tonight she didn’t have any residuals. Good girl, Lucy. The more milk you eat, the closer we are to removing your PICC line. Also, her blood gas test tonight was even better, with her CO2 at 40. No changes scheduled, though.

The weird thing is that her platelets dropped even more, to 9, so they gave her another platelet transfusion. Nobody really seems to understand what’s going on with her, so I spent the whole morning researching fungal infection, thrombocytopenia (low platelets), and various other things. I started reading study after study, article after article, and I realized that one doctor from Utah was writing (or at least co-authoring) most of the relevant articles I was reading. I was reading that NICU babies who get a lot of platelet transfusions have a much higher risk of death, lung disease, and retinopathy because of the transfusions. So I was getting worried that maybe she was getting unnecessary transfusions, because 1) they don’t make a difference for long, since the yeast attacks any platelets in her bloodstream, and 2) she’s still clotting well and doesn’t have any active bleeds. I really wanted this doctor’s opinion on Lucy’s case, so I figured I’d try to give him a call. I was surprised and impressed that he called me back within an hour and spent probably 20 minutes discussing Lucy with me. What I found out is that yes, having more platelet transfusions is potentially pretty bad, but there are probably no doctors (including him) that would let her just hang out with platelets less than 10. So even though they won’t last long, she needs a transfusion because the risk of bleeding is much higher at these low numbers. If she gets above 20 and doesn’t have any bleeding (she doesn’t), then he wouldn’t recommend transfusing.

There’s a LOT more (I feel like I know enough about this to give a lecture to a room full of neonatologists), but the main point is that they’re doing everything right with her (according to this expert), and all we can do is hope that her platelet count comes up so that she doesn’t have to have too many transfusions, because that could be really bad. He did say that her platelets would improve as soon as her infection starts to improve, and he thought it was really good that she hadn’t ever had any real brain bleeds, that she was gaining weight well, and that there was no end organ dissemination of the yeast so far (that is, it hasn’t set up shop in any of her organs that we know of).

Based on what I’m reading, it seems like they’re doing everything I would want them to do in terms of treatment of her infection, also. That’s reassuring. Since she’s also eating well and seems to be weaning a little from the ventilator, I’m hopeful that the caspofungin is starting to work. And when she can have her PICC line and ET tube removed, she should be in a much better position to kick the yeast infection.

It’s all a matter of time. She just needs time to get well, but there are so many factors involved in that. So our goals right now for her are 1) to continue to eat well so that she can be weaned from the TPN and have her PICC line removed, 2) that she does well with her breathing and is able to be weaned off the ventilator so her ET tube will be removed, and 3) that her platelets improve.

I was prepared to be my daughter’s advocate in the event that her treatment was not in accordance with best available medical knowledge, but I was happy to find that that wasn’t necessary, and that her doctors are doing exactly what (I think) they should. Just one more reason I’m happy to have landed in this particular NICU with this particular staff. They’re wonderful people and all good at their jobs. And they seem to really care about Lucy, which means so much to me.

Lucy was a trooper tonight while she had her heel pricked and then squeezed to death to get the blood sample for the blood gas test (we hated to see that), then while mommy changed her diaper. She still desats sometimes, but she seems to come up a lot faster if mommy or daddy cradle her head, hold her arms, or hold her hand. She’s good at holding hands, and has a really good grip. She gained 80 grams today (!), but it’s not clear whether that is all actual weight gain. If so, that puts her at almost 2 lbs. 5 oz. Enough of it was actual weight gain that she looks clearly chubbier, and that makes her parents pretty happy. Since she peed through one Snuggie, then pooped all over another, they had to put her into the smallest size Snuggie that she started in. She looked HUGE in it, with all of her limbs hanging over the sides. The first time in her life that she’s ever looked huge, even if it is relative.

Anyway, she’s being a good girl, and growing like she’s supposed to. Even with this yeast infection and platelet issue, she doesn’t seem like a sick baby, and all the nurses and doctors think this is a very good thing. A few things are certain: she’s strong, and constantly impresses everyone who knows her, and we love her more than anything.

Lucy is 6 weeks old!

Our girl has made it to 6 weeks! Good job, baby, we’re so proud of you!

We made it back to Bakersfield and went straight to the hospital, as usual. It made me feel better to be with Lucy, but it also made me feel better because she was actually doing a little better than we’d thought. She gained 20 more grams today, so by now she’s finally doubled her birth weight – 2 lbs 2 oz. Grow, baby, grow! Her milk has been increased to 2.8 cc’s per hour, also, and she seems to be tolerating all her feedings well.

I misunderstood again the numbers I was being told for her vent pressure. There are two numbers (I’m still researching exactly what each one means, but one is PEEP – positive end expiratory pressure – and the other is related) one larger, one smaller. I gave them as a fraction before – I said they’d increased her pressure from 14/4 to 21/6. What actually happened was that they increased her pressure from 14 (PEEP) and 4 (PC over PEEP) to 15 (PEEP) and 6 (PC over PEEP). The numerator of the fraction is actually PEEP + PC over PEEP, so 15+6, and the denominator is PC over PEEP, so 6. That gives you 21/6.

If your eyes glazed over reading that, I don’t blame you at all. The takeaway is that I misunderstood, and while her pressure was increased, it wasn’t as bad as I originally thought. And she seems to be doing well at that increased pressure – her blood gas test tonight was pretty good, and her CO2 had gone down a bit to 44. Also, although they turned her breath rate back up to 50 this morning, by the time we got there it was back down to 45. And when they suction her chest and endotracheal line, they’re getting fewer secretions than before, so that’s good too. So far so good!

A weird result of her blood test this morning was her platelet count, which had dropped to 19. Her nurse said she’s never seen a baby with platelets so low for so long, so that’s probably not good. On the other hand, what they’re worried about with low platelets is her ability to clot, but that doesn’t seem to be a problem. They poke her multiple times a day, and every time her blood clots well. I asked if there were any other long-term consequences, and her nurse didn’t know of any. So I’m not really sure what to make of that. I hope they start to improve soon, though, because I would rather her not be a medical mystery at this point, unless the mystery is why she’s doing so spectacularly well.

She had another blood transfusion (and consequently, another new IV line in her hand, poor baby) yesterday, but I think that was mostly to replace blood lost to testing.

Tonight she seemed to be resting well, and enjoying cuddles from mama and daddy. I feel so terrible moving my hand (my arms start to fall asleep when I have them through the holes in her isolette too long), because she always startles and desats a little. I guess that means she likes it, though. She was on her tummy, sucking on a pacifier. We gave her the pacifier because she was trying desperately to suck her thumb. Unfortunately, she couldn’t suck her thumb because her entire hand was encased in gauze to keep the IV in place, so she was just repeatedly bashing the gauze into her face. Poor baby. Hopefully that IV line will come out tomorrow, assuming she doesn’t need another transfusion.

So I’m feeling a little better and breathing a sigh of relief. Hopefully tonight we’ll be able to sleep a little better, knowing she’s doing better.

Here are just a couple of pictures of our little sweetie. Here she is holding Daddy’s hand and trying to suck her thumb:

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Enjoying her pacifier instead. See why we hate when she has to have an IV? She can’t even comfortably touch her face:

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And here is a cute little onesie that is still way too big for her and one of the diapers that she wears, also still way too big for her:

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