June 5, 2006
Today, Anastasia has a physical therapy appointment, and while she's at the clinic, they want to weight and measure her (since she still appears to be on the threshold of dropping out of her growth curve). The folks at the clinic keep saying: "If her eating doesn't get better, we'll add a special oil to her formula to add calories." So far, this has (barely) been unnecessary. Yesterday we were out and about, and didn't bring any solid foods with us; those solids must be making a difference, because at the end of the day, Anastasia was really hungry - despite the fact that she drank more formula than usual. We also think her reflux seems to be improving. Yea!
Anastasia is still sitting up, but only if you distract her so she doesn't realize what she's doing. Most of the time when you try to get her to sit up, she pushes back forcefully, and makes herself lay down, the naughty little girl. :)
June 6, 2006
Since my water broke in the 20th week of pregnancy, we've known Anastasia is high risk for developing cerebral palsy ("CP"). Typically, doctors say a diagnosis one way or the other can't be definitively made until 1 to 2 years of age, but there are signs along the way that can give experts clues. When Anastasia started her physical therapy, the PT was concerned that Anastasia's strong head-bobbing was an indication of CP. But at yesterday's appointment, the PT said she was "delighted" with Anastasia's progress. She says our girl has a good, normal flow of movement, and that - unlike so many babies with similar backgrounds - Anastasia is not stiff. "I think we can say that if she has CP, it's a mild form," she said. This is wonderful news, since mild CP is usually tough for the untrained eye to notice. (Some doctors even argue that what's called mild CP isn't CP at all.) She also added: "All that muscle weakness and what little bit of head-bobbing is left, may still go away with work."
Anastasia did some excellent sitting during her PT appointment, and the therapist was glad to see that her spine - which a month ago tended to curve when she sat - is nice and straight most of the time.
We also weighed and measured Anastasia. She's 15 lbs. 4 oz. and 25 inches in length. The gal who weighed her didn't have the chart handy, so I don't know whether that's in Anastasia's growth curve, but my guess is that it is. That's a nice gain since the last time I weighed her. :)
June 7, 2006
The folks at the feeding clinic called this afternoon and scheduled a time for Anastasia to go in and see a nutritionist. She isn't gaining weight like they'd prefer.
Many of my friends and family members look at Anastasia and think this is nuts. "She looks great," they say. But it isn't so much that she should weigh more; it's that she needs to stay on her growth curve, or her brain and lungs won't be growing well. (Brain growth is self explanatory, but also remember that the chronic lung disease should go away as Anastasia grows.)
The appointment isn't until the end of the month, so until then, I'm trying to add butter (extra calories!) to Anastasia's solids, as per the clinic's guidelines. We tried that once this afternoon, and she totally refused to eat. I'm not sure if it was the butter, or just that she wasn't hungry, so we'll keep trying. Yes, butter is dairy, and dairy at least used to upset Anastasia's tummy. But she may have outgrown that; we'll just have to see.
Also, we finally have an appointment with the gal who does assessments for Early Intervention; Friday is the day!
June 9, 2006
A friendly lady from Early Intervention came out this afternoon and took an hour and a half trying to assess Anastasia. I say "trying to" because Anastasia doesn't really cooperate with tests. She gets so involved in studying the new person in her life that she doesn't want to play with the toys that are presented to her. So the results won't be super-accurate. Still, it looks like Anastasia will qualify, even though it will be over a month before she gets any actual therapy. Whether or not they will send a physical therapist to our house is still up in the air. The assessor (who will also be the person who comes out every other week to work with Anastasia on general developmental stuff) said that sometimes the PT just gives her exercises to do with the kids, rather than the PT coming out herself. That would be disappointing, since our whole purpose in applying was to get physical therapy. Whatever the case, though, we'll take what we can get. We want to ensure Anastasia gets the best possible chance to "catch up" with her peers.
June 13, 2006
I took inventory today of a few things that make Anastasia smile and laugh.
She laughs heartily at: belly kisses, ear kisses, when she's anticipating either belly or ear kisses, when mommy sucks her fingers, tickles, and when anyone gives a fake cough.
She smiles readily when: mommy or daddy try to "eat" her feet, when mommy says "excuuuuuse me!," and when daddy comes home from work.
She's such a laid-back, happy little girl.
She's also getting better about going to sleep without her swing. It's getting her to stay asleep that's the real problem. And yesterday, she went on a total nap strike. All very typical stuff, I'm happy to say :)
This weekend, we took her on her first long walk (a couple of miles). She sat in her stroller, wearing a sundress, hat, and sunglasses, and was very quiet and observant. We showed her off a little bit at a coffee stand, and she fell asleep on the way home. It was so delightfully normal!
June 13 (part II)
Today, both my husband and my mother noted how Anastasia's tummy is now flat - this, after I'd made a mental note of it myself. She definitely could use more weight on her body. I spoke with the feeding clinic today, and they suggested I try putting some vegetable oil in her food, instead of the olive oil I've already tried. Just a quarter of a teaspoon, they said. This made me think I might have been putting too much butter in her veggies, too, so I just tried giving Anastasia some oatmeal with just a little bit of butter. She loved it. In fact, it was the first time she's really opened her mouth for the spoon. So hopefully we are on to something here.
June 16, 2006
Yesterday the "special educator" for Early Intervention dropped by. She gave me the results of the testing she conducted last week and we talked over our goals for Anastasia. There were no surprises in the test results; they were virtually the same results the county nurse presented to us in the past. They show that Anastasia is right on target in her communication skills. She was marked down slightly in her "personal-social" skills because she has eating issues. Out of a possible 100%, she was given 75% for her fine motor skills (basically, how she uses her hands), and 71% for both gross motor and adaptive skills. Nothing too earth-shattering, thankfully. Too, the test is not entirely science; there's an art to it, and everyone acknowledges that perfectly healthy, normal babies sometimes score below 100% in certain areas. The test is only a guideline for understanding where Anastasia's skills are at the moment - not what they will be like in the future.
We'll see the EI educator again in three weeks (EI has a three week break after school lets out), and she'll continue observing Anastasia, offering ideas about how to help her along developmentally. At some point this summer, an ET physical therapist will assess her, too. I explained that our insurance is changing on July 1st, and I'm worried the coverage isn't nearly as good as what we've had - but the coordinator says that if we can no longer afford the physical therapy services we're currently getting, EI will make sure one of their PTs treats Anastasia. I only hope that if it comes to that, Anastasia can get services in a more timely fashion than EI has offered up to this point.
Also yesterday, Anastasia rolled to her left during tummy time - a first! Normally, she tries to get off her tummy by rolling to the right. I often lay next to her, on her right side, to prevent her from doing this, and I've been surprised that it never seems to occur to her to roll to the left instead. Finally, she did it...but only once. Funny girl.
Last week, my mother had an amusing/maddening story for me; she saw her doctor for the first time in a while and she told him about Anastasia: "My daughter's water broke at 20 weeks, and my granddaughter was born at 25 weeks--" and before she could go any further, her doctor broke in: "Oh, I wouldn't get too excited, if I were you." My mother had a grand time telling him that Anastasia is now 10 months old and doing just fine.
It's amazing to me what comes out of people's mouths when you're talking about preemies. In particular, I'm amazed at doctors. Sure, doctors need to look at medical situations realistically. But, good grief, what good does it do to tell someone to not "get too excited" about a baby? As if you could prevent yourself from becoming attached! (We were attached to Anastasia from the moment we knew I was pregnant!)
June 19, 2006
The big news today is that Anastasia has spoken her first word. Yea!
We spent the weekend with my in-laws, and all through Father's Day Anastasia was mouthing and whispering "ah-ba." Last night, my hubby said, "Do you mean 'gran'pa?'" I thought he was being a little ridiculous, but Anastasia repeated: "Gran'pa." "Surely that's just a happy coincidence," I said, but Anastasia proceeded to say "gran'pa" several times before she went to bed. This morning, she said it again. That's a pretty impressive first word, even if she doesn't quite know what it means (at least, that's what I suspect).
The weekend was very over-stimulating for Anastasia. It was her first time sleeping away from home (since she left the hospital), and grandma and grandpa's house was fascinating to her. Even more fascinating were her three little boy cousins. If they were anywhere within her range of sight, she had her eyes glued to them.
At one point, my husband and I left while Anastasia was napping. When she awoke, she seemed fine...but soon she started to look around and realized we weren't there. She cried, and her little cousins tried to sooth her by showing her some favorite toys.
As we suspected would happen, Anastasia's bottle feeding was terrible all weekend. When there are interesting things going on around her, she just can't get interested in eating. She was also pretty tired all weekend because she rarely napped (there were too many fascinating things going on). When she's that tired, she barely eats. However, on Father's Day she did really well with solids. She even tried bananas for the first time. She seemed to like them (no funny faces, at least), but she kept gagging a little and vomited twice. I suspect it was the texture, even though I used formula to water it down. (She did the same thing with baby food pears.)
When we got home Sunday night, she ate half a bottle and then seemed to doze off. When I tried to put her down, she cried and cried and cried. Finally, her daddy suggested I give her some solids. I did, and within 45 minutes, she was fast asleep.
June 19 (part II)
Anastasia's physical therapist was a little easier on her today, knowing she'd been mostly sleeping all day due to playing too hard on the weekend :) The PT is also on the feeding clinic team, and, suspecting Anastasia was hungry at one point, fed her some applesauce (which Anastasia didn't like) and graham cracker (which she did like). We discussed some of Anastasia's feeding issues, and she was quite concerned when she heard that our girl coughs and gags on certain foods. She thought a barium swallow study was probably in order, since kids who react this way to food are often aspirating food into their lungs. The swallow study allows doctors to see exactly what's happening when someone swallows by making food visible in an X-ray.
The PT also suggested trying adult oatmeal instead of baby oatmeal. Apparently, baby oatmeal has the lowest amount of fiber, followed by instant adult oatmeal and regular oatmeal. Baby oatmeal is fortified with iron, but since Anastasia is on formula, she gets plenty of iron. So, today I bought adult oatmeal for her, along with some other foods the PT suggested: cottage cheese, avocado, graham crackers, and teething crackers.
The PT also suggested bringing any "difficult" foods with us to our feeding clinic appointment and mentioned pasta as a possibility. This shocked me, and I think she's believing Anastasia should be eating like a 10 month old (which she is, chronologically) instead of an almost-7 month old (which she is if you look at her corrected age).
June 21, 2006
It's so nice to see Anastasia really enjoying some food! Naturally, it's something sweet: graham crackers. When the PT offered a graham cracker to Anastasia on Monday (crumbling it between her fingers and placing the crumbs in Anastasia's mouth), Anastasia got pretty demanding when the crumbs didn't come fast enough. She's doing the same thing at home, and will eat a graham cracker even when she won't eat anything else. (Woohoo! Nine calories down!...So much for my high falutin' ideas about only offering her vegetables for a while.) She's also doing well with the teething crackers (actually, it's Zwieback toast). Her eyes light up when I offer to let her hold the stuff, and she sucks and gnaws on it. She only gets a very small amount of food, but it's great practice for feeding herself.
My in-laws gave us a jumper last weekend. They'd purchased it for Anastasia's slightly older cousins, but it was used very little because the boys were too big for the thing. I thought Anastasia would love it because she adores bouncing, swinging, and kicking. But I've also read all kinds of warnings against jumpers, so I asked the PT about them. She said they were fine as long as Anastasia didn't have a tendency to toe-walk. (She shows no sign of that.) So each night, my hubby puts her in the jumper, trying to teach her to use it. It's pretty big for her, but she holds herself up fine. She hasn't learned to jump in it yet, but she very much enjoys twirling around in it, getting a good view of her surroundings.
June 22, 2006
Last night, my hubby was holding Anastasia in the family room while I made her a bottle in the kitchen. From where I was, I could hear her crying: "MamaMaaaaaaaa! Mamamamamama!" She stopped when I walked back into the family room. Does this count as knowing the word "mama?"
Anastasia continues to love graham crackers, but when I tried mixing some graham cracker crumbs into her oatmeal, it made her gag, cough, and vomit. This got me to thinking...Whenever she gags, coughs, and vomits, it's on thick foods: mashed pears, mashed bananas, too-thick oatmeal. I'll have to bring that up at the feeding clinic next week.
June 22 (part II)
What a frustrating morning! As is typical, I struggled to get most of Anastasia's second bottle down; she never did finish it. Then I decided to offer her some good ol' fattening cottage cheese. I figured I'd better start small, and gave her about half a baby spoonful. She seemed to like the taste, but as she moved the food to the back of her throat, she gagged and vomited a large amount. After cleaning her up, I offered a small amount of applesauce. Again, she gagged and vomited. Not even bothering to clean her up too much, I gave her two small graham crackers. Those stayed down. It's so frustrating to feed Anastasia only to have her vomit up large amounts! :(
After a bath, I put her in the high chair (which she now fits into pretty well) and offered her a Zwieback. She opened her little mouth like a baby bird - something she almost never does. I told her she was a big girl and could feed herself. She took the toast and eagerly gnawed on it while we ate lunch.
Speaking of feeding issues, quite a few parents have lately asked for my advice on this topic. My knowledge is limited to what works for Anastasia, but I've posted a new section on the website that lists our "tricks." I hope something there may help someone.
June 23, 2006
Just posting a photo we took of Anastasia today.
I'm so exhausted that while I was helping Anastasia do some sitting today, I let her topple over, hitting her head. Thankfully, it was just on the carpet. She cried only a moment...I need some sleep!
June 25, 2006
Today, my mom bought Anastasia a Bumbo seat. Anastasia's physical therapist recommended one for strengthening Anastasia's torso when I can't hold her and she might otherwise be reclining in the bouncy seat. When I put her in the seat this afternoon, I clapped and said "Yeaaah! Big girl!" She grinned and squealed, proud of herself.
Anastasia also seems to have mastered the jumper. She still loves to twirl in it, but also now also bounces happily.
My dad-in-law is staying with us this week and Anastasia is quite intrigued to have him interrupt our usual routine. She let him feed her solids today, and really enjoys it when he plays the piano in the morning. (It makes her almost happy during tummy time!) She especially likes it when he plays Boogie Woogie; it makes her squeal. She's still whispering "gran'pa" frequently.
On Saturday, Anastasia and I took our first long walk without my husband. (He's sweetly over-protective, and usually insists we only walk with him.) She loved it and only fell asleep in the last stretch toward home.
Oh, and by the way, Anastasia turned 7 months corrected age on the 23rd. :)
Ready for her walk.
June 26, 2006
We had two firsts today: This morning, Anastasia ate (and seemed to like) avocado. I think the trick was to mix it with plenty of formula, so it was rather liquid. (She later vomited up mashed cottage cheese.)
Anastasia also had her first dip in the pool! Her daddy was worried it would scare her, so we just dangled her legs in the water at first. She was laid back about it, so we put her in a baby floaty and climbed into the pool with her. She never cried or fussed at all, although she was fairly serious (only giving us small smiles) and clung to her daddy the entire time.
Anastasia's first time in a pool.
June 27, 2006
Anastasia had an enlightening appointment at the feeding clinic today. First, they arranged a swallow study - but weren't able to get us an appointment until August. By the end of the clinic session, though, we were wondering if we'd be needing the appointment at all.
At home, I feed Anastasia a full bottle, and only then see if she'll take some solids. This is because she's barely getting enough formula to sustain her current weight; she needs every ounce she'll suck down. But today at the clinic, they offered her solids first, wanting her to be as receptive as possible.
And receptive she was! She ate mashed baked beans (and loved them!), mashed macaroni and cheese, mashed cottage cheese mixed with baked beans juice, mashed banana, graham cracker, soft Swiss cheese, mashed corn, mashed peas, and flavored (mixed berry) cream cheese (which she adored!). She didn't cough, gag, or vomit a single time.
Then I was reminded of two things: 1) When Anastasia pushes away a bottle and I bring it back to her lips, hoping she'll eat more, she frequently gags, and 2) the things I offered that she gagged on and vomited up weren't just thick, they were lumpy.
Therefore, we think Anastasia may gag when she's full but is offered additional food. Also, I was totally unaware that if you offer a baby food that is both liquid and lumpy, she usually won't know whether to treat it like a liquid or a solid, and therefore will end up choking a bit. Soooo...I have to be sure to mash things extremely well, and not put them in liquid; if I want to thin something a bit, I should add something thicker than formula (like the baked beans sauce in the cottage cheese, for example).
The clinic also gave me a list of fattening foods to try with Anastasia. It includes: tofu pate, hummus, flavored cream cheese, cheese whiz, pudding, yogurt, soft Swiss cheese ("Laughing Cow cheese"), jams or preserves, refried beans, ice cream, and egg nog. When your baby needs extra calories, all those ideas about feeding them only veggies and fruits quickly fly out the window.
The nutritionist also said Anastasia wasn't getting enough calories from her formula, and (once the clinic speaks with Anastasia's pediatrician and gets her okay) it looks like we'll be adding a powder called polycose to her formula. It will make every ounce 27 calories. I asked why we weren't going for 30 calories an ounce (something I know some preemies need), and the reply was that they like to take a fairly conservative approach for several reasons - including the fact that more calories can be harder on the kidneys. "We'll see how she does on 27 cal, and take it from there," the RN told me. I'll start by giving Anastasia one bottle a day with the polycose, and gradually increasing, since the powder can cause diarrhea.
Anastasia weighed 15 lbs. 11 oz., and measured 25 1/2 inches long today.
June 28, 2006
I picked up Anastasia's polycose today; nearly $30 a month for the stuff. Insurance won't pay. Hope it works! It's nearly all carbohydrate.
Anastasia came with me to the pharmacy, marking her very first time in a store. Our pharmacist has been following her story and was delighted to see her in person. He called over all the other pharmacists and they oohed and awwed over her :) Nobody tried to touch her, which was nice, and Anastasia babbled to me about the store once we were outside.
On the way home, I strolled Anastasia through the park. One little girl of about six came running up, yelling "Baby!" She had her hands on Anastasia's stroller before I could pull her away, and when I said, "Don't touch!" she didn't move, but said: "Why?" As I pulled her little hands off the stroller, I explained that Anastasia was born nearly four months early and that any little germ could potentially send her to the hospital. The little girl seemed unimpressed, and her hands went right back on the stroller. Finally, her grandpa pulled her away. I made sure not to touch Anastasia after I'd touched the curious little girl.
Ugh. It's very difficult to be told for months that germs could kill your child, and then learn to somehow allow standards of hand washing, etc. to become more lax. Note to self: next time bring hand sanitizer.
As my husband said when I proposed taking Anastasia into a store for the first time. "It's scary. But she needs to be exposed to the real world."
LEFT: Yesterday, on her way to the feeding clinic. RIGHT: A similar photo taken in early February. How she's grown!
In her Bumbo seat.
June 29, 2006
Last night, my father-in-law was talking to Anastasia and said, "Hello, baby." Clear as could be, Anastasia parroted back: "Hello, babe."
Anastasia is making progress physically, too. It used to be that in order to escape tummy time, she'd roll to her right. If I blocked her from rolling that direction, she didn't even try to roll to her left. (Even though she was physically able to roll to the left.) But now, she rolls to the left all the time. This morning, she also sat without help for about a half a minute, two times. Each time, she didn't topple over, but purposefully pushed herself backward into my arms.