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Eating & Reflux (year 2, 2006)
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October 2006
October 1, 2006
Yesterday Anastasia had encounters with two new toys.
First, my mom gave Anastasia a crawling doll. She'd been trying to find one for weeks now, hoping it would encourage Miss A. to crawl. She ended up buying a used doll on eBay, because we couldn't find a new one...Now I have some inkling why they may not be made anymore...
At first, Anastasia was intrigued. Then we turned the doll on, to make it crawl. Anastasia's eyes got a bit bigger. But then the doll suddenly flipped it's head (I swear it almost turned its head in a complete circle) and made a screeching sound followed by gibberish babble. It was like something from a horror flick. My mother and I were laughed hysterically, but poor Anastasia cried. I held her and I think our laughter calmed her down.
We now refer to the thing as The Possessed Doll. (Hubby thinks we should put a noose around it's neck and hang it on our porch for Halloween...It probably would scare the kids half to death.)
In all seriousness, though, my husband thinks he can detach the speakers so the doll won't scare Miss A....who, incidentally, really seemed to want to make friends with the doll. She tried to hold it's hand, and later - with a little trepidation - tried to stroke its hair. But every time she touched the doll's scratchy, straw-like hair, she pulled back and made a face that clearly said "Ewwww!"
In the evening, hubby brought home a gift from his parents: a walker.
(Now, before you dash off a thousand emails to me about how bad, bad, bad walkers are, let me just say that I've researched why they are generally not recommended. The #1 reason is they make it easy for babies to fall down stairs. Well, our only stairs (which lead to a dropped down family room) are securely fenced off by child-proof gates. Besides, I don't plan to put Anastasia in the walker and then go about my business. Reason #2 that walkers are discouraged by pediatricians is they can prevent children from reaching out and grabbing things - thereby discouraging curiosity and learning. But Anastasia can reach things just fine in this walker. So much so that when she's in it, I'll be keeping my eye on her 100% of the time. And reason #3 that walkers are generally not recommended is that if they're used too much, they can prevent children from developing on what's considered a "normal" schedule. But we already know Anastasia will probably walk before she crawls, and I'll make sure she's only in the walker briefly each day. Oh, and did you know that walkers have been around for at least 300 years???)
Anyway, the moment I put Anastasia in the walker, she squealed and clapped her hands. She was instantly drawn to the bright, colorful toys on it. A minute later, she accidentally discovered she could move sideways. A minute after that, she was moving backwards all over the house! She is really excited to be mobile, and we're glad to see she's almost always standing in the walker, rather than sitting. Oh, and she's already trying to chase the cat around the house!
October 2, 2006
Anastasia spent some time with her play mate, Miss E., today. It was also the first time Anastasia's sat on the ground. That may sound strange, but I've always either held her, or put her in the bouncy seat while she was outside (since I knew she'd put grass, leaves, and bugs directly into her mouth if she was on the ground). Sure enough, even though I put her in the middle of a blanket, Anastasia pulled on the blanket until she had easy access to leaves and grass. Then Miss E. joined her in trying to eat the grass.
They had fun until Miss E. got very tired and started crying. Apparently worried, Anastasia started crying, too. Both mommies then decided it must be nap time!
October 3, 2006
Last night, Anastasia spent her first night sleeping in the nursery. It was hard on me (I still like to reach over to her co-sleeper and check her breathing...an ingrained habit after seeing her breathing stop and her face turn blue so many times in the NICU), but apparently it wasn't hard on Anastasia. She behaved exactly as she does when she's sleeping beside me. She fussed a little when I put her down, and then woke after her midnight bottle, fussing and playing a little. Otherwise, she slept quite soundly. What a relief, really!
October 6, 2006
This morning I detached Anastasia's co-sleeper from our bed and made sure it was nice and clean. Tonight, my husband will fold it up and put it in storage. It's kind of sad. My baby's not so little any more.
On the other hand, once we got over the butterflies in our stomachs, we found ourselves enjoying having our bedroom back to ourselves. We can talk before we go to sleep now, without disturbing Anastasia.
October 7, 2006
Today, Anastasia learned to "play ball." My mother and I have been trying to get her to do this for months, and today, it just clicked. My mom rolled Anastasia the ball...and then she rolled it back! She did this over and over, squealing with delight, quite proud of herself.
This makes me feel a little better, as I've been reading some books on games to play with babies, and it seems none of the games suggested for 9-12 month olds interest Anastasia. (She's just about 10 1/2 months corrected age.) Are they too advanced for her? Or do they bore her? I'm not really sure. I'll probably discuss this with our Early Intervention coordinator. She'll have a much better idea than I whether or not Anastasia is falling behind.
Speaking of such things, Anastasia has been stingy with her words lately. She tends to talk with her mouth shut. I think she's practicing. But this morning she delighted me by squealing when I produced a bottle of bubble water (this girl loves it when I blow bubbles!) and crying: "Mama!" I wish she'd say that more often!
October 8, 2006
I woke up this morning to the sound of Anastasia squealing in delight as she played ball with her daddy!
October 10, 2006
Anastasia's been doing lots of cute things lately. I always say "Here comes daddy!" when I hear the car pulling up at lunch time or after work; yesterday when I said this, she looked right at the front door and started waving.
She's also become more expressive in other ways. She's always loved the book Goodnight Moon. For those of you not familiar with this childhood classic, it alternatives between black and white drawings and very colorful drawings. Lately, every time I turn to a color page, she shrieks with delight.
She always enjoys watching the other children at the clinic, too. Yesterday, while we waited for her physical therapy appointment to begin, she heard her physical therapist telling a grade-schooler to kick his legs. "Pretend you're kicking a ball," the PT said. "Every time you kick, I'll say 'Bounce!' and you imagine a ball bouncing." As the PT took the boy down the hallway, every time she said "Bounce!" Anastasia bounced energetically in my lap.
The therapy session went pretty well yesterday. Anastasia is fine in the waiting room, fine when she sees the PT, fine when we enter the therapy room, fine when I take off her dress and leave her in a onesie, and fine when I put her on the workout mat. But when the PT sits on the mat, too, Anastasia starts crying. It's clearly a "Don't you get it, guys? I don't wanna do this!" cry. About halfway through the session, she was crying much less.
We tried a couple of new things in the session, including putting Anastasia into a large swing. It actually looks something like a hammock, but Anastasia lays in it the short way. The "hammock" envelopes her, reminding me of what babies look like in old drawings of "being delivered by the stork." The PT wanted to see for herself how Anastasia reacted to being swung slowly, then faster and higher. Anastasia didn't complain at all, although she looked a little worried. I think if mommy or daddy had been using this "swing" at home, she would have laughed.
The PT was pleased to see that she didn't freak out (which would be typical of ataxia), and encouraged us to get her moving as much as possible: Swing her, bounce her, roll her, play "airplane"...anything to get her completely comfortable with movement, even if we are the ones doing the work.
October 10 (part II)
I just weighed Anastasia and she's 17 lbs. 15 oz. Woohoo!
October 12, 2006
Anastasia has been saying "I love you" in a garbled, only-her-parents-would-really-understand sort of way for several months. But yesterday, she said it clear as could be. What a sweetie.
October 13, 2006
I just took some photos of Anastasia playing with her daddy's old apple toy. Remember those? With the chimes inside? She loves it! This is a toy they should still make, but don't, as far as I can tell.
October 16, 2006
It feels great that lately I've been able to make some posts that are just about "normal baby stuff!" Today is no exception. Here are some cute things Anastasia is doing:
When she wakes from a nap, she waves at everything in the house as I carry her past them.
Often when I (or someone else) applauds Miss A. for a job well done, she stops, smiles, and gives us her Queen Elizabeth wave.
Whenever she hears music - especially if it's interrupting talking on the radio or TV - she starts to bounce and wave her hands as if she's conducting the tune.
More good news: Anastasia weighs 18 lbs. 1/2 oz. That actually means she
hasn't gained as quickly as we like...but the important thing is she's
still gaining. And the other day, when I asked her if she was going to
start walking soon, she actually nodded her head "yes"... something she
almost never does.
October 18, 2006
Sometimes I think you guys must get tired of reading about how Anastasia's eating is better or worse, but...well, this is our life. Not what a parent longs for, but it's pretty typical for families with preemies.
As it happens, Anastasia is eating considerably less just now, and for no discernable reason. This morning she wouldn't take her bottle at all, even though I offered it in her bottle, in an adult cup, and in a baby cup. I don't get as stressed about this as I used to, but even as I type this, my throat is tightening. Sigh.
October 18 (part II)
I'm about halfway through the latest issue of Preemie Magazine (which is a free publication, by the way), and one item in particular caught my eye. Apparently, the U.S. Food and Drug Administration is recommending that a drug called Gestiva be approved by the FDA. Gestiva would help prevent preterm birth in women with a history of having preemies. The FDA should respond by October 20th, Preemie Magazine says. Initial studies show women taking Gestiva lower their risk of preterm birth by 34%.
October 19, 2006
I receive many emails from strangers who stumble upon this website. (I love it! Keep them coming!) Perhaps 10 - 20% of them are people with no experience with preemies or premature labor. The rest are parents or relatives of preemies. These emails are divided about equally between people who have preemies with health issues more serious than Anastasia, and those who've lost their baby (or babies) due to premature delivery.
I cannot express to you how blessed I am to receive the latter type of emails in particular. I sob with you, as I read your stories of loss and see photographs of your dear little babies, gone so soon. I can empathize, yes. But these emails are also a reminder of what a miracle little Anastasia is.
There are several reasons I maintain this website. One is that I hope, in some small way, it's a source of hope to parents who've lost babies, or who are struggling with serious preemie medical issues. I also hope this website can play a part in educating those with little experience with preemies. Here are some startling statistics:
According to The March of Dimes, studies "reveal that some 12.5 percent of all babies—about 508,000—were born at less than 37 weeks gestation...This is an increase of 33 percent since 1981.” Prematurity is the the number one cause of death and illness in infants.
The University of Florida concluded that "extremely low birth-weight newborns—those weighing less than about 2 pounds at birth—have about a 60 percent chance of surviving their first year.” This is a major improvement from decades past, but we are still loosing a lot of babies.
U.S. News & World Report states "1 in 10 premature babies will develop a permanent disability such as lung disease, cerebral palsy, blindness or deafness....50% of premature babies born before the 26th week of gestation are disabled, a quarter severely so.”
And, as a reminder, when my water broke at 20 weeks, the doctors felt Anastasia had almost no chance of surviving. When I delivered her at 25 weeks, her chances were considered 30%.
It's tempting to believe that with modern medicine being premature is no big deal. But the fact is, Anastasia is doing astoundingly well. So please pray with me for all those families who have preemies who are struggling. Please remember all those moms who've lost infants. Please pray for all those parents who are struggling with the desire to have children, but the fear of loosing more.
October 23, 2006
Last night we took some great video of Anastasia bouncing to music. Her daddy had her in his lap, and when he'd turn the music on, she'd "dance"...but as soon as he turned the music off, she'd stop. Here's the video.
Today we have physical therapy...always fun (she said sarcastically). I'll report back on that later.
October 24, 2006
We had an encouraging physical therapy session yesterday. It began as usual...with Anastasia crying the moment the PT sat down on the exercise mat with her. But there was a grade schooler in the room, too, working with another therapist on the treadmill machine. Anastasia found him fascinating, and soon, her crying stopped. Even when the boy finally left the room, Anastasia continued to mostly be mellow. She was very interested in the toys the PT set out for her (even though they were the same toys she's used a million times before), and while Anastasia wasn't exactly happy and laughing during the session, she wasn't in tears, either.
And she worked so hard! We were soooo proud as we watched her do a number of things she'd never done before. For example, the PT had her squat, and Anastasia tolerated it fine, and then pushed herself up on her own accord.
The PT also encouraged Anastasia to reach to her far sides by putting her I.D. badge (which Anastasia was suddenly fascinated with) out of easy reach. When Anastasia tried to reach for it, the PT helped her plant the hand closest to the badge, then reach with the opposite hand. Toward the end of the session, Anastasia did this once or twice entirely on her own.
Anastasia even stood on her own for a few seconds during the session.
I brought along a small photo album of Anastasia's first year for the PT to see. Unless you've seen an extreme preemie up close and personal, it's very hard to imagine just how small they are, and while the PT realized Anastasia was a mere 1 lb. 13 oz. at birth, she'd never seen photos. Photos aren't the same as seeing a preemie in person, but they can help someone have a better idea of what life in the NICU was like.
I expected the PT to just look at the first photo (the same one that's at the very top of this web page) and the last two photos (an image of Anastasia at birth with a beanie bear, side by side with a photo of Anastasia at her birthday party with the same bear), but she poured through the entire album. "She's just amazing!" the PT said. "I think you need to bring this to the feeding clinic to show everyone just how much food she's really eaten!" That made me laugh, since the PT is the most aggressive member of the feeding clinic.
After the session, hubby said, "Anastasia's really blossoming!" And she is. She was interested in everything, grabbing at everything, exploring everything. It's hard to imagine that she won't soon be mobile in some way to help facilitate all that exploration.
P.S. Today, Anastasia is 11 months corrected age. I can hardly believe it!
October 25, 2006
Anastasia's reflux is definitely worse; she's even taken to vomiting again. I've little doubt this is why she's eating less, too. I was afraid to weigh her today, but was pleasantly surprised that she's gained a little weight. She's 18 lbs. 4 oz. So, I'll keep my eye on her reflux, but unless she starts loosing weight or vomiting more frequently, I'll wait until our next feeding clinic appointment (Tuesday) to request that the doctor reconsider her Prevacid dosage. It's frustrating, though, that whatever reflux medicine we use, it only seems to work really well for a couple weeks, tops. Then Anastasia gains some weight, and it becomes less effective.
I wonder when (and if) she'll outgrow the reflux?
I heard from Early Intervention this morning. After five months (!) of waiting, their physical therapist is finally coming out to see Anastasia. All I want is for them to look at her and give another opinion on her progress and possible ataxia. I may also consider having fewer sessions with our current PT, if I can actually get the Early Intervention PT out on a regular basis. (This would help us a lot, since my husband wouldn't have to take so much time off work.) We'll see.
October 25 (part II)
Breaking news. This just in: Anastasia has a new tooth! Her first one up top. :)
October 26, 2006
I couldn't resist taking some photos of Anastasia in this cute little outfit. She always takes a keen interest in her shoes (and, lately, other people's shoes, too). These shoes are her favorite!
October 27, 2006
I'm groggy this morning because - with her foot - Anastasia kept us half-awake in the wee hours of the morning.
She has three crib toys; all were gifts. She loves them, and as she's going to sleep she often gets all three going by pushing buttons or rolling their tube rattles. This makes lights flash and music play. In the middle of the night, if she wakes briefly, she'll often play with them a little, and the music and lights send her back into sleep land.
But at about 3am this morning, one of her crib toys started playing...and never seemed to stop. Since I'm used to hearing the crib toys at night, I didn't fully wake up. But I did notice that the music kept going, and wondered (mostly in my dreams) why Anastasia wasn't sleeping.
Finally, my hubby got up and checked on her. "Did her toy go haywire?" he wondered out loud.
Turns out Anastasia was fast sleep...but with one foot pressed up against a crib toy's button.
My husband gently removed her foot, and decided to stay up and get ready for work. (He leaves very early on Friday mornings.) As I snoozed off and on, I heard my husband leave the house for work, and a minute later, Anastasia woke a little and got her music playing again. Apparently, she wanted to sleep to her tunes!
When I got up to give her a morning bottle, she wouldn't even think about taking it, so I plopped her down in her Bumbo seat with a Zwieback toast and her ring stacker while I washed bottles. I do this every morning, and always talk to her and look over to check on her every few seconds. But this morning, between "check moments," I heard a thunk! I quickly looked Anastasia's direction and saw her head first on the kitchen floor, completely tumbled out of her Bumbo seat. She almost instantly rolled over onto her back, and as I moved to help her, her expression was one of wide-eyed shock.
I suspect she dropped her toast and was reaching over to grab it off the floor...and bent over a little too far. Thankfully, she was fine, and I laughed and told her she shouldn't work her way out of chairs until she learns to crawl!
October 28, 2006
I think Anastasia may have felt a little conspicuous in her Halloween costume today. I wanted to get some shots of her in it, but she wasn't very cooperative. Embarrassment over her bunny costume? Perhaps. (But appropriate, as she's working on her second top/middle tooth.) Fascination with her first up-close look at a pumpkin? Undoubtedly. Frustration that her costume covered her hands? Yup. And not the least real interest in her stuffed carrot, which I was sure she'd chew on! Go figure! (Oh, and I tried very hard to get Anastasia to show off her bunny tail, but she'd have none of it.)
Still, I got a few decent shots, and Anastasia had fun touching (and tasting!) the pumpkin, which our neighbor grew and saved just for her.
Halloween is an interesting issue, and one that I know many Christian parents struggle with. It's true the day has a dark background and that it's still infused with evil for certain groups of people. On the other hand, as a kid, Halloween is just about getting dressed up and having some fun. I loved Halloween as a child, and it certainly didn't hurt me to dress up and eat candy. My husband did the "harvest festival" thing a few times as a kid, but largely felt left out of the Halloween experience. (He longed to dress up and have fun like the other kids.)
So with Anastasia, we've decided to take a middle of the road approach. Right now it isn't much of an issue, but as she grows older we'd like to do the kids' party thing: costumes, dunking for apples, pumpkins full of goodies. But none of the dark stuff associated with the day, and probably no trick-or-treating per se.
October 31, 2006
The big new is that (as of yesterday) Anastasia has another new tooth. And she's working on yet another. Both are up top.
Yesterday was also the day we met the Early Intervention physical therapist for the first time. She was a very kind lady who took the time to play with and get to know Anastasia before she started testing her gross motor skills. Anastasia was quite wary of her until she showed our girl her favorite "touch and feel" book (the one that encourages her to pull kitty whiskers, of course!). Once the PT read to her, Anastasia took to her like an old friend.
At the end of the session, I asked the PT what she thought of Anastasia's motor skills. "She definitely needs physical therapy," she said. "About twice a month." That was a good thing to hear, since that's exactly what she's getting...and sometimes my husband and I can't help but wonder: "Does she really need all this therapy, or would she be fine without it?"
I mentioned what our current PT says about Anastasia's ataxia, and asked for her opinion on this, too. She worded her answer very carefully, and basically said that in the 40 minutes or so that she saw Anastasia, she didn't notice anything that would point in the direction of ataxia. She emphasized this didn't necessarily mean Anastasia doesn't have ataxia. She also said she'd describe Anastasia's problem more like: "I want to do this, but I don't know how to make my body cooperate."
In the end, it was exactly the response I expected...and the response I think was appropriate. And even though we know that our current PT is highly experienced and very good at what she does, it was good to get a second opinion. I mean, what do I know about physical therapy???
Another reason we wanted an Early Intervention PT to see Anastasia is that we're considering using the EI PT at least part of the time. Since I don't drive (...) and our current PT doesn't have any time slots during my husband's off time, hubby has to time time off work for each of Anastasia's appointments. As long as he has sick time, his boss can't complain about this, but we don't want to push the limits. Too, it means that when my husband is really ill, he can't take time off work. He just doesn't have enough sick leave.
But when I mentioned the possibility of seeing each of the PT's (driving out to our current PT once a month, and having the EI PT drive to us once a month), my husband hesitated...and so did I. While I'm sure the EI PT knows what she's doing, and while it might be interesting to see if someone else's approach would be, the EI PT is a lot easier on Anastasia than our current PT. Even our EI coordinator said their PT wouldn't work Anastasia as hard as our current PT...just because it isn't her style. Both my husband and I think this may not be a good thing. Anastasia is tough to motivate, and we think she needs a pretty aggressive PT.
So...we're not quite sure what we're going to do. I'm hoping our current PT will be at our feeding clinic appointment today; I might run it past her. Who knows? Maybe she can work on our scheduling.
P.S. Sunday was the preemie reunion at our hospital's NICU. It's kind of strange that they host it during RSV season. Because of the timing, there was no way Anastasia could go this year, but I'm sure it will be great fun next year (when we no longer have to worry about RSV).