Monday, July 18, 2011

Week Two

This Friday Lillian turned two weeks old.[1] She's made even more progress:
  • They've taken her off caffeine [2]
  • They've taken her off the oxygen cannula
  • They've taken her off TPN [3] and removed that IV
  • They've taken her off lipids and removed that IV
  • They've removed her PICC line
  • They've stopped giving her probiotics [4]
  • She's able to suck on a normal-sized pacifier
  • She started non-nutritive breastfeeding
  • She started nutritive breastfeeding
  • She's back up to (and past) her birth weight
  • She's lost her umbilical cord [5]
However, they had to start her on some medication for acid reflux (Prevacid) because she experiences frequent emeses ("spit-ups"). This could be due simply to being born premature (her stomach isn't completely mature), to the caffeine she was on, or to genetics (her Daddy was a spitty baby). They've also started adding calories to her feedings, so that may or may not be exacerbating the problem.

WARNING: If you are bothered by pictures of infants in intensive care or descriptions of changing diapers, you probably shouldn't read on.

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Because her PICC line was out, we finally got to give her her first water bath (before this we'd only given her a sponge bath). She seemed to like the warm water. And after that we put her in clothes for the first time. It's surprising how different she looks when she has a onesie on. I also must say that her pictures usually turn out looking different than she does. A lot different. I have no explanation for that.[6]



Because she is maintaining her own body temperature, they moved her out of her incubator and into a bassinet. She was flailing in the first picture I took, but at least that gives you an idea of what the bassinet looks like. The second picture is, I think, a lot cuter. Once again she's doing so well that they've moved her to another section of the NICU which is quieter. Or at least that's what they told us. She's now in a patient room with two other babies. None of the monitors in the room work properly so alarms are going off all the time.

One evening while we were there, I started to turn her to her side. She flailed and caught her feeding tube. Before I could stop her, she yanked it most of the way out. When the nurse tried to put it back in, Lillian was having none of it. She didn't fuss or cry, she screamed. She screamed bloody murder! That was really hard for Leann, so she had to leave. To calm Lillian down, the nurse gave her some sucrose.[7] It wasn't fun to see Lillian that upset, but I've got to admit I'm impressed at how loud she can scream when she decides to.

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Newborn babies often have trouble controlling their eyes and will sometimes go cross-eyed. This is even more prevalent for pre-term babies. Lillian had just had another bath; her hair looked really blonde and her eyes were open, so I started shooting this video. But then she went a little cross-eyed. Then she went a lot cross-eyed. We couldn't help ourselves—it was really funny, so we laughed. We still laugh every time we watch this video. When she grows up she'll probably die of mortification that we posted this video online.

Lillian had her first blow-out this week. She was lying on a pillow in Leann's lap for some non-nutritive feeding and we knew something was going on because she kept making little spurting noises. Sure enough, when we picked her up there was a little yellowish-brown stain on the pillowcase.[8] But that was nothing compared to the next morning. Just as I was about to change her diaper, she started making those noises again. I started scrunching up her little dress so I could change the diaper and my hand landed in something. This time it was all over. All over her. All over her clothes. All over her blanket. And all over my hand. It took both of us to get her undressed (without making a bigger mess) and into a new diaper.


One of Lillian's nurses, Launa, has written and illustrated a few children's books (none have been published, yet, though). This particular nurse likes to draw on the cups used for warming up the milk that's been sitting in the refrigerator.[9] I missed taking a picture of the first cup, which was a princess castle, but I did photograph this…creature…that she drew. We rarely have the same nurse more than a few times, but if we're lucky perhaps you'll get to see a few more of Launa's drawings.

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The two main hurdles that Lillian still has to leap before she can come home are 1. weight gain and 2. nursing. Babies born before 34 weeks often have a hard time learning to nurse. What makes it difficult is that they have to figure out how to coordinate sucking, swallowing, and breathing. Lillian has taken to it quite well, but she gets tired and falls asleep before she's finished feeding. We won't be showing any videos of Lillian nursing, but these videos of her sucking on a binkie are pretty adorable.


The Stargazer Lilies outside the hospital went the way of all the earth, but in their place these yellow ones started to bloom. So here are more of Lilli's Lilies.


On our way home from visiting Lillian tonight we caught a pretty spectacular sunset. I ran over the park across the street and shot a few pictures of it and stitched them together with Hugin.[10] Unfortunately that large tree in the middle of the picture was in the way no matter where I went. Oh, well.


Notes:

[1] For more about her unexpected arrival, see here. For week one milestones, etc., see here.

[2] Preterm babies often forget to breathe. The caffeine helps them be awake enough that that doesn't happen.

[3] TPN (Total Parenteral Nutrition) is an electrolyte solution. If you're curious about what is in it, see http://en.wikipedia.org/wiki/Parenteral nutrition#Total parenteral nutrition.

[4] They were giving her Align (which contains Bifidobacterium longum subspecies infantis) and Culturelle (which contains Lactobacillus rhamnosus strain GG). The B. l. infantis was actually discovered in the intestines of a newborn baby and has been found to aid in the digestion of breast milk. There are two purposes for administering probiotics: 1. to help the pre-term infants develop their digestive abilities and 2. to colonize the digestive tract with beneficial bacteria and thus prevent the growth of harmful bacteria which can lead to a dangerous condition called necrotizing enterocolitis, or nec for short.

[5] It was just hanging by a thread, so I pulled it off. That kind of grossed out Leann. I'm sure you don't mind that I didn't take any pictures.

[6] I don't think it has anything to do with the idea that the camera adds five pounds. She doesn't look nine pounds in any of the pictures or videos, so it must be something else.

[7] The pathways in her brain are still simple enough that the sweet taste of the sugar was sufficient to distract her completely from the discomfort of having a tube shoved through her nostril down into her throat. That doesn't really work for adults.

[8] Leann and the nurse colluded and implied that this was because I was the one who last changed Lillian's diaper. Don't you believe it.

[9] Just to clarify, the nurses fill up the cup with hot water and stick the bottle of cold milk in the hot water so it will warm up.

[10] See my post Make Your Own Panorama.

Image attributions:

The image drawn on the Styrofoam cup is the creation of Launa, one of the nurses at the Utah Valley Regional Medical Center. As it is her creation, she retains all rights to it and it is not included in the licensing for all other content on this blog.

4 comments:

  1. She is looking good! From the videos she looks a lot like Matt to me, though there have been pictures that I thought she looked more like Leann. Mostly she looks like herself. I'm so pleased that she's doing well! We pray for her (and both of you) daily. Josie names her dolls Lillian now.

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  2. Are you saying I look cross-eyed?

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  3. Devin and I have been following Lillian's story and we are so happy to know she is steadily improving. Also, I love her name- good choice.

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  4. Well, Matt, I was hoping you wouldn't catch on to that. I thought you'd assume I meant her hairline, or her nose, or her left knee. But you knew. You knew.

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