Tuesday, April 29, 2008

Standing Up!

Lily started standing independently today! For just a few seconds at a time, she can stand without holding onto anything. Then all of a sudden she realizes that she's not holding on, and she sits down really fast. I'm having a hard time getting a picture of it, so you'll have to settle for pictures of walking with the Dora car - she's practically running in these photos.

Teething Again

This new tooth is really giving Lily a hard time. Maybe if you click on the photo to make it bigger you can see... She already has seven teeth - 4 on top, and 3 bottom ones. The new one, number 8, is going to be on her bottom left. Her poor little gum looks pretty sore, and she's been whiny and clingy for a couple days. Maybe it will break through by tomorrow!

Thursday, April 24, 2008

New Pictures

I thought I might get in trouble if I didn't post new pictures soon, so here are a couple from this afternoon. As you can see, Lily is telling me all about the proper way to prepare and serve a bottle of milk.

All Clear!

Lily saw Dr. Dreyer in Neurology today. What a kind, gentle doctor! It was really a pleasure to visit with him, and not just because of the good news he had for us. He said there is nothing in Lily's sleep study to worry about, and we don't even need to repeat it. In his very down-to-earth manner, he said that very sensitive tests like sleep studies and MRIs must be put together with a clinical evaluation. Considering Lily's cognitive and motor skills, along with her slightly abnormal sleep study, there is absolutely no cause for alarm.
Thank God for keeping a protective hand on Lily all this time... He's moved many obstacles out of her way.

Tuesday, April 22, 2008

Pulmonology Visit

Lily had two appointments in the Medical Center yesterday. One for her Tiny Tots High Risk Follow-Up, which is really more for the doctors' research than it is for Lily, and her visit with Dr. Jon in pulmonology.
Dr. Jon surprised me yesterday. I had expected her to be very concerned about Lily's continued aspiration, as shown in her Swallow Study on Friday; but she said sometimes it just takes a long time for a preemie to figure out the whole swallowing function with thin liquids. Since Lily is doing fine with nectar, Dr. Jon is comfortable just waiting and watching. I really thought she was going to insist on a g-tube, but I was wrong. This seems to be happening frequently with my pessimism lately; perhaps I should try optimism for a change, instead of being such a worry-wart. Might be better for my blood pressure, too! hahaha
I forgot to bring the x-ray film from last Monday to the appointment, and Dr. Jon said it's ok, we're going to get another x-ray in a few weeks. She wants to wait until there's no way Lily's cold from last week could have an impact on her lungs anymore, before we get the x-ray to see how she's doing now. We'll wait until then to decide whether to adjust the diuretic doses for weight or let Lily outgrow them.
Dr. Jon is happy with Lily's growth and supportive of switching to whole milk with Carnation Instant Breakfast, so long as we continue thickening, of course.
We'll repeat the sleep study and the swallow study, both, in about 3 months. Dr. Jon is very comfortable being conservative in treating and protecting Lily's lungs right now. She expects Lily to outgrow these lingering issues, but she agrees that visiting neurology is a good idea right now, just in case.

Friday, April 18, 2008


Lily is a little smarty-pants. She was sitting in her highchair eating lunch today, and she was getting full. She picked up a piece of meat and held it over the edge of the tray, just resting her arm there. I said, "Lily, please don't drop that on the floor," and she smiled and ate the piece of meat. Then she dropped a piece on the floor when she thought I wasn't looking, and I told her, "No, don't drop your food on the floor." She just giggled, like she usually does when she's told no. Then she picked up another piece of meat and dropped it over the edge really fast, like I wouldn't notice if she did it quickly. I said, "Lily, NO," emphatically. And she laughed and said, "I drop it." I said, "Yes, I know you dropped it, and now you're done with your lunch." What a cutie! She is figuring out how to test me, and it's really hard to be firm and say no, when she says "I drop it," just as clear as a bell. Sometimes I just have to laugh with her, I can't help it.
Most of the time when Lily talks, she repeats the ends of sentences when we are talking to her. So it's hard to tell if she knows the meaning of the words she is saying. This time it was pretty obvious! Which makes sense, because her bottle will often fall (or sometimes get dropped purposely) on the floor when she sits in her highchair to drink it. So I usually say something like, "Oh, you dropped it, here you go," as I hand it back to her. So it is logical that she understands these words.
It is really funny to hear words come out of Lily's mouth. She's still so tiny, and she's starting to talk! Of course it will be a long time before she's speaking coherently on a regular basis, but real words are coming out more and more often. Even when it's not real words, she's jabbering away, telling us all kinds of stories. She's quite the chatterbox lately.

Nursery Update, and How to Carry a Toy

Dusty and I sanded and painted Lily's tall dresser last weekend, and the next painting on the walls only needs the black outlines. We're making progress! Only 3 or 4 more paintings to go, then carpet and shelves for the closet, and we'll be done. Oh, and we still have to replace one more outlet in the room, but really, we're almost done!

This is how you carry a toy when you need your hands for crawling:

Fun with the Zebra

Lily has been having a great time with her zebra lately. Toward the end of the slide reel, you can see her start to put her leg down to slide off. She is getting to be such a big girl, getting down all by herself. And today she really looks like a big girl in this outfit. The jeans are still a little big, but I couldn't wait any longer to put them on her - so cute! In some of these pictures, Lily looks exactly like her daddy. People tell us all the time that she looks just like Dusty, but I can't always tell. Today it's very plain to see, though!

Swallow Study

We went to Children's Memorial Hermann for another swallow study today. They had asked me to keep Lily NPO for at least two hours before the study, which was to take place at 9am. Well, I remembered the last two swallow studies -- Lily does NOT like to drink barium! So I didn't wake her up early to feed her a little bit before we left this morning; she just didn't get anything at all until we started her swallow study. Poor baby girl... She was sooo hungry, but she just didn't want the barium. They started with pudding consistency this time, which was of course no problem at all. Then Lily refused the nectar, and I told the speech pathologist that if she wanted to get any information from this test, we better move on to the thin stuff. Lily took about three swigs of thin liquid. It penetrated the airway with every swallow, and she aspirated at least once. So then we had to get her to drink some nectar consistency, just to be sure that she was still ok with what we're doing now. Lily wasn't very happy about it, but she did take a couple sucks of the nectar, and she did fine.
The speech pathologist recommended continuing nectar and repeating the swallow study in three months. We talked about the trouble with transitioning away from a bottle while using nectar, and she recommended cups with straws. Lily has a Nuby cup with a straw for a spout, but she is more interested in chewing on the silicone straw than drinking from it. She has, however, sipped water from a straw at a restaurant. So I guess we'll keep working on straws with nectar, and stop giving her regular water in her Gerber cup. Even though she seems like she's doing fine with the water in the Gerber cup, we can't tell when she's aspirating because she doesn't cough.
We don't want her to keep drinking from a bottle for too much longer, because she has been developmentally ready for a change for quite awhile now. But, considering all the medical issues Lily could be dealing with right now, this aspirating problem is relatively minor. So we're thankful for the blessing that Lily is able to drink liquids of any consistency, and if it has to be through a bottle, then so be it!

Thursday, April 17, 2008

Note to Self:

NEVER go upstairs to put Lily's clothes away while she plays in the living room. It doesn't matter that she knows better than to touch the fireplace.

Lily's Medical News

Well, this cold has been hanging on for quite awhile now, but I think Lily's on the mend. The cough is intermittent, not continuous, but it continued to get worse instead of better. We got a prescription cough/cold medicine last Friday, which helped to loosen up some of the congestion, but the cough still got worse over the weekend. She was having a really hard time with solid foods, and of course formula made the yucky stuff in her throat even worse. Sunday night was the worst - Lily's breathing was labored while she slept, her oxygen saturation was in the 80s instead of 90s (good thing we bought the pulse ox, huh?), and she kept waking herself up with her coughing. Mommy didn't get much sleep at all, and even Daddy was awake periodically throughout the night. Lily slept through the desats, but she was really upset each time she woke up coughing.
So Dr. Dickerson ordered a chest x-ray Monday morning, along with a CBC and a blood culture. The tech printed the x-ray film for me, so I was able to see for myself and take the image to Dr. Dickerson instead of just the radiologist's report. Lily's lungs definitely have fluid in them, but the x-ray looks about the same as the last one that was taken. Granted, she was still on oxygen then, but we've certainly seen worse x-rays. The radiologist's report indicated bronchopneumonia, but Dr. Dickerson says it's hard to say how much of that was already there because of Lily's chronic lung disease and how much is new, from her current cold.
Because of the way the cough and congestion gets a little better and then gets worse again, Dr. Dickerson suspects allergies may be at least part of the cause. But on the other hand, this could really be pneumonia, and her lungs are suffering from this illness, not just the preexisting lung disease. So she covered both bases by prescribing a five-day course of Zythromax, along with over the counter children's Claritin. Lily was a LOT better the very next day after starting the new meds, and has improved each day since then. No more waking up during the night, and the cough is seldom. Still sounds bad when she coughs, but now it's only once or twice every few hours.
Due to the difficulty with the solid foods, though, Dr. Dickerson also ordered another swallow study. So we're going to do that tomorrow. Next week, we have Lily's Tiny Tots follow-up with Dr. Evans, a visit with Dr. Jon in pulmonology, and we're also going to see the neurologist next week. Busy week.
The neurology appointment had me a little worked up at first, but my friend Kristina, who is a pediatric nurse, assured me there's no cause for alarm. See, we were initially told that we couldn't get in to see the neurologist until mid-June. Even Dr. Dickerson couldn't get us into their schedule earlier - the neurology nurse told her to fax Lily's medical records to them, and the neurologist would review them and decide if Lily needed to get in sooner. So she did, and then yesterday they called to say that Lily has an appointment next week. So my first thought was that the neurologist saw something bad and wanted to get Lily in right away... But Kristina said that's not necessarily the case, so I guess I'll wait until they actually have bad news before I get too excited.
So that's the news with Lily's health... Just a lot of doctor visits coming up, and she seems to be getting over her "bronchopneumonia."

Pictures at the Duck Pond

We went back to feed the ducks again over the weekend. Enjoy the pictures! This time the ducks were more spread out, so Lily was able to get down on the ground. She really wanted to get the little ducklings. Oh, if you look closely, you can see the goose taking the bread right out of Dusty's hand.

Thursday, April 10, 2008

Happy Baby

I love this picture of Lily and I playing together this afternoon. I can almost hear her shrieking laughter when I look at the picture.

Tuesday, April 8, 2008

Feeding the Ducks

Lily and I have been going for a lot of walks lately, usually first thing in the morning. As soon as she wakes up, I get her bottle ready before I even get her out of bed. She goes straight into the jogger, I hand her the bottle, and we're off. We'll see how long I can keep this early-morning activity stuff going. If you don't know me very well, you may be surprised to learn that I am absolutely NOT a morning person, and early-morning workouts are not my cup of tea. Those of you who do know me well have probably fainted at the shock of me going for a walk before I've even checked my email or had a chance to drink a Diet Pepsi. It's just that this is the easiest time to go for a walk because it's still cool outside. We can't really go in the evenings when it cools off because of Lily's dinner and bedtime.

So anyway, today our walk was in the afternoon because we were busy this morning. I decided to take some bread along with us, and we went up to the front of our subdivision, where the ducks are. I thought we would sit in the shade and toss the bread to the ducks. Well I was in for a surprise!

Apparently the ducks around here are very accustomed to being fed. They saw us coming from a block away and started heading toward us. We arrived at the first cluster of ducks, and I parked the stroller in the grass and sat Lily down on the ground. As soon as we had stopped, the ducks were swarming. Once they saw the plastic bag with food inside, they came in closer and started chomping their little duck bills in eager anticipation. It was hilarious! I was afraid they might think Lily was a piece of food (they were all clustered around my feet), so I held her while we tossed the bread to the ducks. Lily didn't really know what to think of them at first.

Then we headed further toward the front of the subdivision, where we found a lot more ducks, and that's where the babies were. There must have been at least 20 tiny little yellow ducklings, and there were about 4 that were a little older. I'm telling you, I've never seen such greedy ducks in my whole life, and the babies were just as bad as the adults! There were also a few big geese honking loudly and following us around, begging for food. A couple of the ducks even flew up over the others to get closer to the food.

Once Lily realized that the ducks were following us because of the bread, she thought it was really funny! She kept looking back and forth between me and the ducks, laughing her head off. She especially liked when the ducks flew toward us, and she liked watching the tiny ducklings scurry toward the food that I would throw toward the middle of their group.

I have fed ducks many times before, but this was a whole new experience. I wish I had taken the camera with us this afternoon! Maybe we'll go back in a few days.

15-Month Well-Check

Lily had her 15-month well-check with Dr. Dickerson today. Great news! Lily's weight is in the 50th percentile, and her length is in the 60th! For corrected age, of course, but that's still awesome. We were beginning to wonder if she would ever hit the chart for length, and now she's jumped into the 60th percentile. So she really did exactly what the nutritionist suspected - she stretched instead of gaining much weight these past couple of months. Today's weight was 17 lbs 9 oz, and length was 27 1/2 inches. I don't remember the head circumference measurement, but it was big. So she's average height and weight, and she has a big head. haha... So now the goal is to hit the charts for her actual age by the time she turns 2.

Lily's right ear is still a little red, with some fluid, but it doesn't seem to be bothering her at all. The runny nose has turned into more of a stuffy nose; the cough is not as frequent, although it still sounds terrible when she coughs. Dr. Dickerson said her lungs still sound great, and since the ear infection is not bothering Lily we're not going to treat it with antibiotics right now. Lily's handling her first cold like a little trooper - for the most part, she's playing, eating, and sleeping just like usual.

We're still working on getting the speech therapy and neurology appointments lined up. We're also waiting to see Dr. Jon before we wean the chronic diuretics, although Dr. Dickerson said it's probably time to discontinue those. We'll be transitioning away from the bottle when we make the switch to whole milk, which will probably happen within a month. The nutritionist gave the ok for transitioning to whole milk with Carnation Instant Breakfast added to it, so we're just waiting on some guidance from speech therapy regarding the thickener.

Lily gets to keep her Froggy pacifier for a little while longer, but it's time to start preparing myself for having to take Froggy out of the crib. I can already tell that I'm going to be a lot more upset about it than Lily will be. For me it will be yet another sign that Lily's growing up, she's not a baby anymore. For Lily it will probably just be a couple nights of crying for a few minutes at bedtime. She goes to sleep so easily - we're very spoiled.

Overall, Dr. Dickerson was very pleased with Lily's progress at this well-check. She's perfectly on-target developmentally, and she's eating and growing well. What more can you hope for?

My Own Spoon

We went to Babies R Us today, and Mommy bought me some new spoons. They have short handles, so Mommy thought I would be able to use them by myself. At dinner time, Mommy put some yummy pink strawberry salad on the spoon for me, and I took a big bite right away. Mommy was really excited because I'm such a big girl!

And then I figured out that I can take the food off the spoon with my other hand. That is even better than eating with a spoon. I really like to use my fingers to feed myself. Mommy said we'll keep practicing with the spoon, but I don't see why. Finger foods are the best!

Oh, and these carrots and peaches and pears look really big in the pictures, but they're really small. Mommy started cutting up the carrot slices when I put the whole pieces in my mouth instead of taking bites. Sometimes I do a good job taking bites, but sometimes I get in a hurry and shove lots of food in my mouth at once. Mommy says that's not polite.

Monday, April 7, 2008

Lily playing at home - new pictures

Lily has been a busy girl lately. She loves to climb up on things. In the past couple of days she has started to figure out how to get back down relatively safely, but the picture on the left was taken last Monday, when she would climb up and not be able to figure out how to get down. She has a bit of a temper.

Lily has fun running her fingers over the cold air return every time she goes by, and she's very comfortable walking with this toy now. When she gets to a wall, she tries to back up and turn it. When that doesn't work, she waves at me as if to say, "Over here, Mom, I need your help." Her babbling doesn't come out quite that way, but I'm sure that's what she means.

Lily has always been a Daddy's girl. They have so much fun together.

Thursday, April 3, 2008

New Video!

Here's my most recent video of Lily, filmed on April 1st. Now we're all up-to-date on the videos. I realize that some of the stuff in these videos may seem like mundane, ordinary activities (drinking from a sippy cup seems pretty boring to videotape, but I think it's cute the first time you see it). I hope those of you who are far away enjoy even the boring videos and they help you see what Lily is up to these days.

Lily's had a rough couple of days...

Or maybe it's just Mommy who's having the rough couple of days, and Lily is just fine. At any rate...

Lily's had a clear runny nose for about 10 days now, which we originally attributed to allergies. But then she started coughing on Tuesday. No big deal at first, just intermittent coughing throughout the day. Then a little more coughing on Wednesday. And then during the night last night, a lot of coughing. Now it's not just a couple coughs here and there. It's coughing spells that last a little while, and it's a wet, yucky-sounding cough. No fever, she's still playing and acting like her normal self, but she has a cold. If she hadn't started coughing, I wouldn't have worried (the runny nose didn't bother me for the first 7 days, why start worrying about it now?). But the cough is troublesome because of Lily's lung disease.

So we trekked off to Dr. Dickerson's office this morning to get checked out, which happened to be a good day to go for a visit anyway, since Lily also managed to burn her fingers on the oven yesterday afternoon.

Dr. Dickerson agreed, so it's official: Lily has a cold, it's not just allergies. It's really amazing that Lily made it this long without catching something; thank God this is JUST a cold! Her lungs sound good, and there's just a little bit of redness in her right ear. Dr. D said we'll just watch her for now. There's not much you can do for a baby with a cold because cold/cough medicines aren't recommended at this age and size. So we'll continue with nasal saline and the bulb syringe, and if she becomes uncomfortable she can have 1/4 teaspoon of Benadryl. However, if the cough seems to get a lot worse, if she has difficulty breathing, or if she develops a fever, we'll have to get a chest x-ray to check out her lungs. No big deal for now, but Dr. Dickerson was glad I brought her in because we do need to be cautious with Lily's lungs. Yes, she's bigger, and yes, she's off of her oxygen - but she's still at risk for serious respiratory infection.

Lily's poor little fingers... I still can't believe she managed to beat me to the oven and burn her fingers while I was watching her the entire time. She was playing with the magnets on the fridge, the oven was preheating, and I was standing sideways at the counter, watching Lily while I mixed up some brownies (like I really need those). She turned around and started heading for the oven; I dropped the egg in the bowl and swooped her up as she stuck her hand in the gap between the oven door and the drawer below the oven. I can't believe she got burned this badly in the split second that her hand was touching the oven. Of course I ran cold water over it, and she stopped crying right away. She seemed perfectly fine as soon as the water touched her hand, and she went back to playing like normal, just with fat little blisters on her fingers. I figured she was probably fine and we could take care of it at home, but then I read on WebMD that it was at least a 2nd degree burn, and that's when I kinda freaked out. Lily laughed at me while I called Dusty, crying. Dusty was certain that Lily was just fine and told me everything was ok... But I decided to call Diane to see if there was anything else I needed to do. She told me how to protect the burn and let it heal, and cautioned me that since the burn is over a joint we need to be careful about infection. So all was well... And then Lily popped the biggest blister! Ahhh! So then I put one of her socks on her hand to keep it covered, and that seems to be working. Dr. Dickerson said to continue with Neosporin at least twice a day until it's healed, and keep the sock on there for three more days. If it gets infected she'll prescribe an antibiotic, but so far just regular home treatment is fine. To be slightly less dramatic and give you a more accurate picture, the burns are really very small, and it's not a big deal. Just pretty scary for Mommy.

Meanwhile, there are more reasons it was good to visit with the doctor today. Dr. Dickerson spoke to one of the UT pulmonologists regarding Lily's sleep study, and they decided that since Lily's apnea episodes are central, she needs to see a neurologist (particularly because of her prematurity). We could wait for our appointment with Dr. Jon to see if she agrees, but this other pulmonologist is confident that this is the next step that Dr. Jon would take (Dr. Jon is the one who usually handles sleep disorder cases, but she has been on vacation for what seems like a very long time). So Dr. D is getting the neurology appointment lined up.

Also, we discussed Lily's thickened liquids. Dr. Dickerson ordered a speech therapy evaluation through the Care Group so we can have a therapist's guidance in discontinuing the thickener. We don't want to stop suddenly and have Lily start aspirating again because it was really a swallowing issue all along. So just in case, we'll work with a therapist; they might want a new swallow study, but hopefully not. We'll see what they say. I don't know if the speech therapist will come to our house like Tina (OT) did, or if we'll have to go to the Care Group's clinic.

And yet another topic for discussion today - nutrition. Lily weighed 17 lbs 10 oz today. Dr. Dickerson seemed happy with that; I'm a little curious about it because she was about 17 lbs 2 oz when she had her surgery early in February. Of course kids don't continue to grow as fast as they do early on, so perhaps this small change is perfectly normal. In any case, Lily will be 15 months old soon, so it's time to start thinking about whole milk instead of formula, like I mentioned previously. So I'm waiting for a call back from the nutritionist to discuss Lily's weight and what she wants us to do regarding milk. She will probably recommend some Pediasure in addition to whole milk.... We're looking forward to stopping formula because of the cost. Hopefully Lily will be happy about the switch too!

So once again, we've got a lot of irons in the fire. I'm praying that we can get all of this stuff sorted out within a month or two.

Wednesday, April 2, 2008

Video Posts

Well, like I said, bear with me while I learn! Hopefully you can all view these videos easily enough; let me know if there are any major malfunctions. As you can probably tell, the two longer videos were taken with our camcorder instead of the still camera - much better quality, although the original video is better than the YouTube version. I'm sure I'm doing something wrong, but I suppose this will work. Enjoy!

Oh, by the way - I realized that when there are several new posts in one day, you may not see all of them in the email, just the two or three most recent ones. However, there should be links to the remaining posts at the bottom of the message . So you should be able to click on the titles of any posts you haven't seen in order to view them. Hope that helps.

Lily - March 2008

This video is from February 26th, March 2nd, and March 14th. This is when she was working on pulling up and just starting to cruise along the furniture. Now this stuff is old news, but it's still cute to watch. I'll try to post more current videos as often as I can.

Lily Crawling

Here is a video from when Lily was just starting to crawl. It's kind of long (over 5 minutes). If I get this video stuff all figured out, hopefully in the future I'll be able to post short clips for you instead of these long movies.


Bear with me while I learn how to put everything together here on the blog.... Here is an old video from November 3rd,  2007 when we first hung Lily's swing in the backyard. The video was taken with our still camera, so of course the quality is horrible - sorry about that! More videos to come.