Monthly Archives: April 2012

Day 34, a good one

Just a short post tonight, sans pictures, I’m afraid. I should really really be sleeping because I had a completely crazy day today, and have another long one tomorrow. I’m not feeling completely better, but I don’t think I’m contagious anymore, so I’m going back tomorrow to see my sweet girl. I haven’t seen my Lucy since Thursday!

First (always first) Lucy. She had a really good day today, and I think I can sum it up pretty quickly. First the one downside. Today was, I thought, supposed to be her last day of antibiotics for her infection, but she’s actually getting 5 more days, David said. Better safe than sorry, but I hate that she’s had to have so many courses of antibiotics. Other than that, things seem really good. They’ve increased her feedings to a constant drip, so she’s now getting 1 cc every hour. Before she was getting 16 cc’s a day, I think, and now she should be getting 24. It will make her gut work, and hopefully it will help her start growing faster too. She seems to be tolerating it well so far, but they will check for residuals every 6 hours. Her blood gas test this morning was good, so at 3 am they will be reducing her vent pressure to 18 (from 19) and her breathing rate from 50 to 40. Hopefully she does well with that. Her night nurse last night said she’d never seen her rest so well (and she pooped twice, yay), and David said she seemed calm and mostly slept today. She hasn’t needed sedation, and when he was there this evening she was only requiring 25% oxygen. Our baby definitely had a good day.

David got to snuggle with her a lot today, and she seems to be soothed by his touch. He’s such a good dad. I loved the man intensely before, but seeing him with Lucy warms my heart and makes me love him more than ever before. I just hope she remembers her mommy after so long, especially with this yucky, scratchy voice.

About my crazy day: I thanked my family yesterday, but my brother and especially my parents deserve some kind of medal or something. They worked their butts off today to help me with a problem that was time sensitive and a HUGE pain. No clue what I would have done without their help.

So that’s all for now. Love to you all, and goodnight. Yay, I get to see Lucy and her papa tomorrow!

Day 33, I think.

I’m still feeling pretty yucky, so all of my news today is indirect, either from David or the nurses. Lucy had a good day, though. She’s grown a tiny bit, both in length and head circumference. She’s still getting residuals on her feedings, but they’re not worried at all, and are still giving Lucy her regular feedings. In fact, she’s now getting 4 cc’s every 6 hours, and David got to feed her twice today. She had a really good blood gas test this morning, so at 3 am tomorrow morning they will be turning down both her breath rate (from 55 to 50) and her pressure (from 20 to 19) on the ventilator. Definitely steps in the right direction. Every time they make downward adjustments, I wait anxiously with fingers crossed for the next blood gas test to see if she’s tolerated the change well. Sometimes she hasn’t, because she’s just not quite ready yet, and I’m always disappointed when that happens. Obviously we’d like to see nothing but steady improvement, but that’s just not how it works in the world of micropreemies.

Anyway, David is carrying on with the daily routine, commuting back and forth across Bakersfield from the Ronald McDonald House to Mercy SW. We wanted to again mention how wonderful the Ronald McDonald House has been, and share some pictures of our home-away-from-home.

This is the Bakersfield Ronald McDonald House. Cute, huh?

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Inside there’s a living area with TV, tons of DVDs, a Wii, and all kinds of board games:

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There’s also a fully-stocked kitchen, with dining area and laundry off to the left:

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Next we have a computer room, leading to one of the three bedrooms (we also get wireless, so we use our laptop most of the time):

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Last, our room. Small, but completely functional, and made a little more homey by putting up the sweet “Lucy” garland made by our good friend Tabatha. We also have cable and DVD in our room:

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They have been really incredible. Again, if you’re in a position to help, please consider donating to a Ronald McDonald House. It’s an amazing charity.

One last thing before Lucy pictures. I just want to say thank you to my mom and dad (Hi Mom and Dad!) for taking such good care of me while I’m sick. I’m staying with them, as our new house is still being painted and finished, and they’re so good to me. They let me sleep when I can, accommodate my ridiculous schedule, help me clean, do my laundry (!), and cook me yummy food. Actually, let me just expand this. I honestly don’t know what we’d do without our families. Both my family and David’s have gone above and beyond anything we expected in this situation. They’ve been so incredibly supportive and helpful in every way, and we owe them so much (as if we didn’t already). We love you all so much, and will never ever be able to thank you enough. Lucy is one lucky girl to have so many amazing grandparents, great-grandparents, aunts, and uncles.

Okay, new baby pics! All courtesy of David (whom I miss so so much!). Here’s Lucy sucking her pacifier:

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And in action!

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It’s a little dark, but here’s Lucy in her “hear no evil” pose:

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And here’s a nurse pic. I’m always so amazed by her eyes. They look so strange with their huge black irises that make it look like she doesn’t have pupils. Also, her poor little nose always gets kind of smooshed by the tape. Still, I think she’s pretty sweet.

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See you soon, sweet girl. See you soon, wonderful husband.

Love to you all.

Lucy’s REAL one month birthday (looong update)

It’s Jill again. Still pretty sick and still very tired, but a little less of each today. Mostly I’m just missing my husband and my baby. But at least if I have to stay away, I know that the person I trust most in the world is there with her, and he’s doing a great job – reading to her, touching her, loving her up close while I can’t. I hate not being there, though.

It occurred to me that when I said before that Lucy was one month old, I really meant that she was 4 weeks old. I always think there are exactly 4 weeks in a month, but of course that’s not true. So Lucy was born on March 28th, and today, April 28th, is her real one month birthday. I’m so proud of our little fighter baby.

Lucy’s doing pretty well, mostly. There were a couple of less-than-great updates, unfortunately. Actually, a few, because one was from a couple of days ago and we forgot to mention it. When they took off the little heart sticker that held her temperature monitor in place, they saw that her skin was irritated, and she actually has three little sores and a bruise-like thing. One was dressed, the others not, and David said they were looking better today. I think these kinds of things are kind of inevitable when you’re lying in essentially one position all day every day.

Her blood gas this morning showed higher CO2 levels, so they turned her breath rate up to 55 from 50, when I was really hoping that it would go down. A small step in the wrong direction. The breath rate on the regular ventilator only goes up to 60, so she doesn’t have much more room to go up. They’re aiming for one blood gas test a day now, because they took out her UAC (umbilical arterial catheter) (they had already removed the UVC – umbilical venous catheter – when they put in the PICC line in her arm). So they’re only drawing blood when necessary, as they have to take it from the heel of her foot now, poor little thing. UPDATE: I just talked to David and her nurse, and she had another blood gas at six tonight, and everything was within a normal range. Whew, that’s a relief. So they didn’t decrease her breath rate, but they did decrease her vent pressure to 20, and I think that’s a bigger deal than the breath rate. Her nurse thought she was okay at 55, and that they would turn it down when her CO2 levels were too low. She said Lucy’s doing a lot of the work on her own now, so it’s fine that she’s still needing a little help blowing off extra CO2.

The third potential negative update is that she had a little residual milk in her tummy when they checked today, so she had to miss at least one feeding until they figure out what’s going on. She’s been getting 2 cc’s every 6 hours, but when they checked she had 3 cc’s in her belly. David says they weren’t too concerned about it, and they said even full-term babies do that sometimes. We just hope it isn’t the start of feeding intolerance, which can be a real problem for preemies. She’s done well so far with feedings, though, so maybe it’s nothing. I assume they’ll check again to see if it went down, and maybe do an x-ray to look at her bowel. UPDATE from David and the night nurse: they checked for residuals at her six o’clock feeding and found about 1 cc, so they fed her 1 cc more. They’re not worried about the residuals because 1) her tummy is soft. If it were obstructed it would start to feel hard, 2) the excess amount could come from saliva, mucus, and bile, and 3) it didn’t look like it had excess bile, or that it had gone down and come back up. If any of those things had been different, they may have worried, but it looks like it’s normal, and she should hopefully get her normal amount of milk at her midnight feeding. Her nurse said since it was her birthday, she should have some cake, and since she can’t have some cake, I should eat some cake and she would feed her that breastmilk, so it would be birthday cake milk. Ha, I love the nurses.

In other news, her oxygenation has been pretty good (staying in the mid-30s mostly, I think). Now that she’s back on the regular vent she’s undergoing “respiratory therapy,” which means giving her pulmicort and levalbuterol, which are basically asthma medicines. These should help her lungs recover and help her breathe easier. Hopefully they help keep her off the oscillator, as well. But the girl is growing! Our little Lucy is still little, but she’s up to 820 grams, which is about 1 lb. 13 oz. Her TPN (total parenteral nutrition) is at 12% concentration, now. They can increase it up to 15%, but I think they won’t unless for some reason she can’t start getting calorically significant amounts of breastmilk soon.

So that’s basically all the Lucy news. I don’t know if she can tell that I haven’t been there, but I feel guilty that she’s been without her mommy for a couple of days. David’s been visiting as usual, and he touches her and reads her stories. She always seems more relaxed when he’s with her, so that makes me feel better. He’s also been really good at getting the updates, and he was very sweet to take over blog-posting yesterday. It’s not like he’s much less tired than I am, after all.

I have been getting a little more sleep while I stay here at my parents’ house. Part of that is that they take care of me and help me do all the stuff I’m used to doing myself. It’s nice to get more sleep, although it makes me feel a little guilty because 1) David’s there doing all that stuff by himself, and 2) I feel like I shouldn’t profit by leaving my baby, although that’s obviously not very rational. And it’s actually a good thing, as I’ve noticed an obvious increase in my milk production. It’s still not a ton, but it’s definitely better. David created an Excel spreadsheet to keep track of it, which is very useful and was a good idea.

A long note about pumping breastmilk, for those who have been wondering what I’m doing/trying. If the idea makes you uncomfortable, just skip this paragraph. Breastmilk is one of the most important medicines Lucy can get, as far as I’m concerned, and luckily, this NICU sees it the same way. They are incredibly supportive of feeding babies breastmilk. Unfortunately, there are several things getting in the way of my production. One is separation from my baby, because being with the baby releases hormones that promote lactation, and because babies (full-term ones, anyway) are more efficient at getting milk out than any pump. Another problem is my schedule and stress levels, as stress and lack of sleep both prohibit milk production. Yet another problem is that Lucy was so premature (as if that wasn’t enough of a problem anyway). You just aren’t meant to be breastfeeding at 23 weeks gestation, so lots of moms of preemies have trouble establishing supply. It’s interesting though – the milk you produce for a premature baby is different than it is at full term, and has more protein and lipids that are important for preemies’ continued development. The human body is amazing. Lastly, I have PCOS (polycystic ovarian syndrome), which can have a major impact on sufficient milk production. Because of all these things, I have relatively low output (about an ounce per pumping). But it’s so important to stockpile as much as I can for when she needs it, and to keep up milk production if I’m to have any chance of breastfeeding when she’s ready, that I’ve been following a pretty strict regimen. Since a few hours after I gave birth, I’ve been pumping with a hospital grade double electric pump every two hours during the day and every 3-4 at night. It’s a tough schedule, especially since it can take almost an hour when you take into account getting ready, pumping, labeling and freezing the milk, and washing all the equipment. Our whole life now basically revolves around my pumping schedule. David is the best partner, though, and helps as much as he can. He’s well-known at the Ronald McDonald House for doing all the cleaning up, and they all think he’s wonderful. In addition to the pumping, I’m trying to stay well-hydrated and I’m taking all kinds of medicines/supplements. I take metformin (a diabetes drug also used to treat women with PCOS) to promote breast tissue growth. I take fenugreek, goat’s rue, and Motherlove More Milk Special Blend (all herbal supplements recommended by the lactation consultants). And I’ve been drinking Mother’s Milk tea occasionally, which has essentially the same herbs as in the aforementioned supplements. There is at least one prescription drug available that can help with milk supply – Reglan – but I’ll have to ask my doctor about that one. Anyway, it’s been a long, hard, frustrating road so far, and it will continue to be for probably quite awhile longer. Even when Lucy is ready to breastfeed I’ll probably have to continue to pump to keep up my supply, if it lasts that long in the first place. I had always planned to breastfeed, and it’s heartbreaking to think about not getting to have that experience with her.

If you’ve read this far, thanks for bearing with me. I feel I should reward you with adorable Lucy pictures, but I don’t have any new ones, unfortunately. David took a few but didn’t have time to upload them. You’ll just have to take my word for it that she’s precious – tiny and perfect and looking better all the time. We’ll try to upload pictures soon.

Tonight Lucy’s nurse said she was performing acrobatics for them – kicking, fist-pumping, and “doing the splits.” She said she’s a wild woman. I love to hear that kind of thing about her. She definitely has a lot of fight in her, and her mama couldn’t be more proud.

Lucy’s quiet day

This is David. Jill was feeling too tired to write up a post today, so I’m writing a short one. She’s feeling better, but not well yet.

Lucy has been stable again today, just like yesterday – we may feel like we have too much excitement in our lives lately, but as long as the excitement stays outside of the NICU, I’ll take it. So we were very glad Lucy had a quiet day, even if Jill was not here to experience it.

The frequency of her feedings has been increased to 2 ml every 6 hours. Still not enough to provide a lot of calories, but it is a good sign that her digestive tract has continued to work.

Today we learned that since coming off the oscillator Lucy has been on two drugs that are essentially asthma medication. This is necessary to keep her airways open, since the respiratory therapists have been able to hear wheezing and rubbing when they listen to her lungs.

She has also liked being on her tummy, and she has been fairly calm and sleepy (she was given some sedatives today). However, she has been very cute.

Here are some pics from yesterday and today:

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More tomorrow.

Sorry guys, no big update tonight. We had to run back home to Ridgecrest because I suddenly got pretty sick with a nasty bug. Obviously I can’t visit Lucy when I’m sick, so I definitely want David to be there. So I can’t get him sick, and I shouldn’t stay at the Ronald McDonald House either. I’ll be waiting it out here until I’m well enough to visit her, although it breaks my heart. This will be the first time I’m away from her for more than one night, and you can’t really explain to a tiny baby why mommy can’t come. I never thought that being a good parent might entail leaving my baby alone in a hospital room. At least she’s in good hands.

And at least she’s doing really well. More on that tomorrow, but today was a very optimistic kind of day.

Love to everyone.

An already good day plus Dewar’s

It’s weird how ebullient I feel on Lucy’s good days. I’m not completely happy, because no matter how good her days are, this is still not a good situation, and I would still rather she were happily growing inside me. But I’m so relieved on the good days that I’m almost delirious. Today was one of those days (although part of the delirious/relieved feeling may be that I got a little more sleep last night). Lucy had a really good day today. And we had an extra good day because we visited Dewar’s ice cream parlor and candy shop, (again, thanks Lauren!) and had ice cream. That was super fun.

First, they tried her again on the regular ventilator. Her first blood gas wasn’t ideal in terms of her CO2 levels, so they turned up her settings a bit. Her second gas test still was about the same, so I kind of thought she’d be back on the oscillator by tomorrow. But her third test was much better, and the doctor was pleased, so it looks like she’ll be staying on the regular ventilator, at least for now. We’re so happy about that because 1) it’s a step in the right direction for her, and a step closer to us being able to hold her, 2) it’s way smaller and quieter than the oscillator, and 3) she can move around a lot more. And that girl likes to move. The other day her nurse said “that girl has spunk. When she wants to move, she moves. The sedatives don’t even phase her.” It must be true; each of her nurses has said so independently. I love that my baby is so active!

Update: right before I was about to post this her nurse called with her most recent blood gas results, and her CO2 had gone up a bit, unfortunately. But the doctor wants to keep her on the conventional vent for now, and they’re doing another test in the morning. They’re going to suction her lines pretty regularly (I guess they have more secretions on the regular vent than on the oscillator), and they’re going to turn her on her tummy, which can help them breathe better. So hopefully that helps, and hopefully she’ll be better by the morning, but you can never tell with these things. We’ll see if she lasts on this vent or has to go back to the oscillator.

Update 2: it’s 6:30 in the morning, and her last blood gas was good, so she’s staying on the traditional ventilator for now, yay!

Her doctor also started her feedings again – slow at first, 2 cc’s every 12 hours for now. I’m just happy that her tummy looked good enough that they thought it was okay, and that she’s getting milk again. She was weighed again after she had some diuretics to get rid of excess fluid, and she was 714 grams, 1 lb. 9 oz. I think that’s probably pretty close to her actual weight, and I’m happy with that.

We got in lots of cuddle time today. I love kissing her sweet back and tummy and head and every single part of her. She’s a total daddy’s girl, though. She was completely relaxed and sat-ing high when he was cuddling her. It’s so nice to snuggle with our little Lucy, especially when she’s opening her eyes to look at us. She’s so precious.

Daddy cuddles:

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All tucked in:

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Our little Lucy Anne:

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Lucy’s 1 month old!

Happy one month birthday, Lucy! We’re so proud of her for making it this far! Good job, baby girl.

Before I get too far, let me just post a retraction. I’ve never been so happy to be wrong! First, I thought there were three new micropreemies in the NICU but there were actually only two. Second, they just got transferred to different hospitals. I was so happy to hear that. Of course, they were moved because they needed a higher level of care (meaning, I think, that they needed surgery), so they have a long perilous road ahead of them. But at least they’re still alive! Another bit of good news: baby Noah graduated from the NICU today! He was the resident micropreemie before Lucy, and he’d been there just over 3 months. We’re so happy for Noah and his parents, and wish them all the best. Noah is an inspiration, and he gives us hope for Lucy.

Lucy had another stable and uneventful day, pretty much. Her last few blood gas tests showed that her CO2 levels were a little too high, and since they weren’t going down, her doctor bumped the amplitude on the oscillator back up to 28. We were a little bummed by that, but her next blood gas results after that were really good. Since then she’s been very stable, needing 30-35% oxygen. Her feedings still haven’t been resumed, and I’m not sure what they’re thinking about her bowel, but they haven’t made any other changes. She seems pretty happy. Earlier today I was cupping her torso in one hand, her head in the other, and singing to her, and whenever I stopped either she started fussing and desat-ing. She would immediately stop and go back up if I started again. I guess the kid likes the Beatles. I sang just about every Beatles song I could think of.

The other event in Lucy’s day was the insertion of a PICC line (the catheter that runs from her arm all the way to her vena cava). She seemed to tolerate the procedure well, and her nurse was getting ready to remove the line from the veins in her umbilical cord. They’re leaving the arterial line in her umbilical for now. I hate to see yet another place on her body that I can’t touch her, but I know that it’s a good thing.

Our sweet Lucy is just hanging in there. If she keeps it up for a few more months she’ll probably be ready to come home with us. I can’t wait.

Lucy’s cuddling with her owl blanket.

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I love her eyelashes! And that she has hair now! She’s so sweet.

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A non-picture update.

I didn’t get any new pictures today, because Lucy had a blood transfusion and wasn’t at her best. They always make her bright red and puffy, so I’ll get more pictures when she’s back to normal. She had the transfusion for the same reason as always: her hematocrit levels were a bit low from regular labwork draws.

Anyway, no new pictures, and a bunch of dry information to keep myself up-to-date. First I’ll just say that she’s about the same – stable, seems to be doing pretty well. Her oxygen has stayed pretty steady in the low 30%’s. The doctor lowered the mean pressure on the oscillator to 10 (from 11) this morning, but other than that there were no changes. Oh wait, I take that back, he also increased the concentration of her sugars to 10 (from 8), so that’s also good, and should help her gain weight. So both of those things are good because they mean she’s being weaned from the oscillator and she’s still growing.

Speaking of growing, she weighed 740 grams today, or 1 lb. 10 oz. That’s quite a jump from yesterday, and since she was being weighed by a different nurse (and also looked a little swollen, even before the blood transfusion), I doubt that’s all actual weight gain. They give her a diuretic to make her pee out excess fluid every time they transfuse her, so her next weight will probably be more accurate. She’s now 12.5 inches long, and her length, weight, and head circumference are within normal ranges and increasing at a good rate. She’s at the low end of normal for each week, but still normal. And after all, she has a disadvantage: she started at 23 weeks, but she was only 24 minutes into 23 weeks, so obviously she’d be at the low end of the 23 week spectrum. I mean, she was basically a 22 week baby.

Remember that her doctor stopped her feedings because of a section of bowel that seemed unchanging on the x-ray? The question has not been resolved, and he hasn’t set a time to restart feedings, but her nurse said she thought the x-ray today looked better. And she’s still pooping (and peeing through her bed, haha), so that’s definitely a good sign. The steroids can cause bowel perforation, but she doesn’t have that, so it probably is just her infection, in which case it will just clear up with the antibiotics. Hopefully she’ll be able to eat again soon.

Today it seemed like Lucy was focusing on taking off her pulse-ox monitor. That’s the glowing red light they keep strapped to either a foot or a hand that measures the saturation of oxygen in her blood. It’s been on her foot today, and tonight she managed to get it off three times while we were there. At one point she also gave her feeding tube a pretty good yank, but she let go before I had to try to unclench her fist from it. We also did her oral care once today, and I fixed her diaper (she had that thing half off too). Not quite a diaper change, but every little thing I can do for her makes me feel more like her actual mommy, and less like I’m just playing mommy.

Unfortunately, there was a dark cloud over our happiness with Lucy today. I don’t know anything about this, because we’re not really allowed to ask about other babies in the NICU, but this is what I think I know. In the last week the NICU got in three micropreemies, 22 weeks, 24 or 25 weeks, and 23 weeks. (It’s possible that there were only the 2, and that the 23 week baby is still inside its mama – these things aren’t always clear to us). All of them were bigger than Lucy when she was born. I knew 2 of their names, because I could see their isolettes from the hand-washing station. They were there yesterday, but their isolettes were empty today. It’s possible that they were moved to another hospital closer to their parents’ homes, or it’s possible that they had to be moved to a NICU capable of performing surgeries on babies that size, but it’s hard to believe that was the case for all of them. I can only draw one conclusion, and it makes my heart hurt. I so hope I’m wrong. Every time Lucy does something that makes me laugh, I can’t help but think about those parents and how they won’t get that with their babies. They were all bigger than Lucy – it could so easily have been her. It still could, but she’s got a much better shot by this point, I think. I can’t help but remember that for the first week or two, it hurt to laugh. Those poor, poor parents, and those poor sweet babies, who never got a chance. At least we’ve had a month with Lucy by this point – if I’m right, they didn’t even get a week.

If I ever despair or start to ask why this happened to us, I will remember these other babies and count my blessings. Lucy is this amazing light in our lives (I guess she was aptly named – her name means light), and we are so grateful for every minute we get with her.

Lucy, Day 26

Lucy is doing well today. It’s weird. Not much is happening really, so we feel like we’re just kind of waiting around to see what will happen. Definitely preferable to things going wrong, but of course I wish she was just steadily getting better. No change is good, though. Her doctors keep telling us that they’re just trying to give her time to grow on her own.

Her doctor this morning was his usual cheerful self. I’m always nervous before talking to the doctors, because they have a policy of brutal honesty. I appreciate that they are honest, obviously, and I wouldn’t want them to sugarcoat things, but they can seem pretty negative sometimes in their unwillingness to predict positive outcomes. Anyway, her doctor is not too worried about her infection. It’s a staph infection that is very responsive to antibiotics, and he thinks she’s already looking better and seeming less sensitive. (I agree – she hasn’t needed any sedation or pain medicine for about 3 days, the longest she’s gone since she was born.) Her breathing, although not really improving that much at the moment, is at least stable on low oxygen. She’s extremely active, pink, and winning over all her nurses. Unfortunately the doctor decided to suspend her feedings temporarily, although her bowels seem to be working well, because he’s noticed an unchanging section of bowel on her x-rays. He said it doesn’t look like NEC (necrotizing enterocolitis, in case you forgot, our next big worry), and he thinks it’s just from her infection, but he’s just being cautious. I’m sad my baby doesn’t get her milk though. He also thinks, in hindsight, that some of what he was seeing as lung damage was probably a little bit of pneumonia, also from this infection, and that once it clears up she’ll probably start to improve faster. She gained a little weight too, up to 680 grams. It’s not much, but it’s good that she’s gaining at all so quickly after the steroids.

We’re settling into life here, and it’s weird to realize we’ve been doing this for almost a month already. It’s strange to think that we might be almost 1/3 of the way through this, because it feels like it will never end. It feels like this is our life now, forever. Intellectually I know (hope) that we will be taking her home in a couple/few months, but I can’t imagine life any other way than it is now. People keep telling me that I’m so on top of things, but it’s not because of my superior organizational skills or anything. It’s all I can do. Learning everything I can about what’s happening to my baby and documenting it is the only way I can think of to contribute to her care. It’s like I’m studying for a big test, like I can affect her outcome by knowing everything. Of course I can’t, and of course I don’t know everything, but it at least gives me the illusion that I’m doing something to help her. Fortunately, as I get to know her doctors, nurses, and the NICU at Mercy SW, I feel more and more confident that she’s in the best possible hands, and that they’re giving her the best care they can. We’re really so so fortunate.

Okay, pictures. These are more pictures of pictures that her nurse took over the last few days. In this one I think she looks kind of like an alien because her irises take up so much space in her eyes. But I still like it because you can kind of see how long her eyelashes are. She has a little cut on her nose that looks much worse in these pictures than it actually is.

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And here’s her in her classic pose. You can see her nurse has captioned it. As I said, she’s getting a bit of a reputation (she had the pulse-ox monitor cover off her foot three times while we were there tonight).

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And this is my favorite. I know she’s not really smiling, but it’s super cute anyway.

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Just a quickie.

Today went pretty well for our little girl, I think. She spent the morning trying to pull out her ET tube, pooping some more, and peeing through her bed. Make those nurses work for it, Lucy! Unfortunately, it turns out that she does have an infection, but I don’t think we’re too terribly worried about it. Any infection has the potential to be very bad for her, but she’s not acting sick and she’s already on broad-spectrum antibiotics. She’s breathing well, though. Her oxygen has been steady at 25%-31% ish, and her doctor turned down the amplitude on her vent today.

(Aside: My friend Shannon came to visit today, and it was nice to hang out with a girlfriend for awhile, especially since David was back home moving.)

I sat with Lucy for a few hours this evening. That girl has crazy long curly eyelashes, which she did not get from me. I kissed her and cuddled her and stroked her leg, and she just stared at me, sucking her tiny pacifier, while I talked to her. She is her mommy’s whole world (along with her daddy, of course).

Pacifier pics for grandma:

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