August 2, 2006
Anastasia had her swallow study at the hospital yesterday. It took place in a small room, and the RN put Anastasia in a foam car-seat-like contraption on an adult-sized chair. She strapped Anastasia in, put a bib on her, and the test began. A radiologist controlled the X-ray machine and watched the swallowing, while our physical therapist fed Anastasia.
The first food they tried was chocolate pudding. They put pudding without barium on the front part of the spoon, then put the barium-pudding toward the back of the spoon. (The idea is to let the baby taste the good stuff first, in hopes she'll swallow it all.) Anastasia tolerated this pretty well, giving the radiologist several good sample swallows. Then they switched to mashed pears and barium, then graham crackers and chocolate pudding with barium, then formula with barium. With each of these, Anastasia was less and less willing to be fooled, and in the end she cried over the taste of the barium. (It's pretty foul stuff, I hear.) Ultimately, she called an end to the study by clamping her mouth shut. Our physical therapist tried to give Anastasia one last taste of the non-barium pudding (to take any bad taste out of her mouth), but our girl stuck her lower lip out, raised her chin, and turned her face away as if to say, "I'm not eatin' anything you offer me, lady!"
We got to see the whole thing, and it was fascinating to watch the X-ray. I imagined we'd see the food go all the way down to her stomach, but the X-ray only showed her head and throat.
Anastasia was a little pouty and teary-eyed at the end of the session, but really, she handled the study well. The RN said most babies start crying the moment they're strapped into the chair.
The radiologist thought Anastasia's swallowing looked just fine, but they made a tape of the session and the folks at the feeding clinic will review it. Still, we expect they'll say Anastasia's swallowing is healthy.
Which brings me to an interesting point. The day before yesterday, we had several appointments, but somehow we walked out of the house without bringing Anastasia's bottle. I was very worried, since I knew we'd be out at her usual eating time. Still, I figured that when she got fussy, I'd buy some graham crackers to tide her over. (Note to self: From now on, carry graham crackers in the diaper bag!) However, Anastasia never really showed any signs of hunger, even though we were out several hours past her usual eating time. By the time we got home, five hours had passed since her last meal. She normally eats every three hours. But Anastasia wasn't even cranky. And when I gave her the bottle, she only drank two ounces.
I brought this up yesterday, after the swallow study, saying that I sometimes wonder if Anastasia's brain just isn't telling her she's hungry. The RN nodded and said they always do all the testing they can first, to ensure there isn't any way they can help the baby eat more - but yes, sometimes they, too, think some kid's brains just aren't sending hunger signals.
Since the swallow study was in the hospital where Anastasia was born, we decided to stop by the NICU. (My hubby finally agreed that since we were already in the "germy hospital," it probably wouldn't hurt!) We were so glad we stopped by.
We waited in the (very small) lobby while the receptionist announced our presence over the intercom, and then, little by little folks came out of the NICU itself to visit with us. We saw a number of nurses (including one of Anastasia's primary nurses), the chaplain, a coordinator, one of the neonatologists - even the two housekeepers. Anastasia started out a little pouty still, but became quite animated and happy once she realized she was the center of attention.
Nobody at the NICU had seen Anastasia in person since December (except for her primary nurse, who visited us a couple of times, and babysat for us once in the late winter/early spring). They were appropriately impressed.
Anastasia seemed to especially enjoy being held by her ol' primary nurse...and was quite intent on chewing the doctor's finger. The doctor had her photo taken with us for her personal album, asked lots of questions about Anastasia's development, and encouraged us to drop by as often as we could. She stressed that usually they don't get to see "their graduates" after the age of two or so, and they wished this wasn't so. (She also commented that Anastasia's language skills were "almost freaky." I laughed and repeated what I always half-jokingly say: "It was those four months listening to the NICU nurses gab day and night!")
In other news, Anastasia is now clapping! She enjoys applauding herself when she's done something impressive. She's also growing lots of hair; every day she seems to have more. However, it's still looking like a mohawk, and now it's standing straight up, Krammer-like.
August 2 (part II)
YAAAAAAAAHOOOOOOOOO!!!!!! We are celebrating today!!! I just weighed Anastasia and she came in at 16 lbs. 2 oz.! She finally passed the 16 lb. mark! (She's been in the 15 lb. range since she was six months corrected age.) Hurrah for Anastasia!
August 4, 2006
Anastasia is continuing to eat decently. She ate so well the day before yesterday, I even gave myself a break and didn't feed her in the middle of the night. That was awfully nice :)
She also continues to be quite the daddy's girl. Several months ago, she rearranged her nap schedule so that she'd be awake when her daddy comes home from lunch, and for some time now, about an hour before he arrives, she starts talking about him. She often does this soon before he comes home for the night, also. When he walks in the door, she squeals and wiggles and bounces, and if she thinks he's about to pick her up, she gets even more animated. It's pretty darn cute.
August 7, 2006
This weekend - at long last! - Anastasia finally said "mama!" (It was getting to be a serious situation; she was working on "kitty," but I told her she'd better learn "mama" before she learned "kitty.") She was feeling tired and fussy and I was holding her close and patting her back. I stopped patting for a minute, as I talked to my husband, and as clear as could be, she said, "Babble babble maMA! Babble."
She's said "mama" several times, since, but I've learned there is a definite down side to this. For example, when I lay her down for a nap, instead of just crying for half a minute before settling down, she cries, "Mama! Mama!" That is much more difficult to ignore...
August 8, 2006
I just talked with the RN at the feeding clinic this morning. She says that even though Anastasia has gained some weight, her weight on the growth chart has reached a plateau. So she wants us to come in for a consultation with the nutritionist later this month.
She also said that they'll want Anastasia to stay on formula until she's 15 months chronological age, and that if she's not doing better by then...(here, I held my breath, hoping she wouldn't mention a G-tube)...they'll switch her to Pediasure, which has even more calories. (Whew!)
Even though Anastasia is doing better with her eating than she was a few weeks ago, she's still borderline, and every feeding is a struggle. Most of the time, I don't stress over it. (What good does that do?) But I do pray about it a lot! I'm still getting most of her calories in with the cup, and I still have to get up and feed her once at night. (Oh how lovely it would be if I could sleep through the night!) It does seem Anastasia is liking solids more (she especially loves oatmeal with prunes or other fruit, yogurt, baked beans, avocado with formula mixed in, graham crackers, and Zwieback toast), but most of her calories still need to come from formula.
I hope that on her birthday (which is coming right up!) she'll eat lots of chocolate cake and ice cream...although she seems to object to the coldness of ice cream and always seems to end up with brain freeze, poor babe!
August 9, 2006
As hard as it is for me to believe, Anastasia will be one year old this Saturday! In honor of her first, struggling year, I've created a video montage of photographs from her birth forward. I hope you enjoy it :)
I also wanted to note that as of yesterday, Anastasia has gained another few ounces, putting her at 16 lbs. 5 oz. So encouraging!
August 10, 2006
By this time last year, I'd already checked into the hospital.
I was cramping. I called my OB, who grimly asked me to remind him how far along I was.
24 weeks...nearly 25.
"24 weeks," he said, sighing. "I don't think we'd try for any heroics. No C-Section."
This meant the doctor didn't feel Anastasia would live if she was born that night, so there was no point in doing something as invasive as a Cesarean section.
"But you can give me drugs to stave off the contractions, right?" I asked. I knew some women stayed on those drugs for many weeks before their baby was born.
"When a woman's water is already broken, drugs to curb contractions don't work very well."
Alexei drove me - yet again - to the hospital, where the cramping subsided on its own. Still, my OB checked me into the hospital. "I wanted you in here by tomorrow, anyway. We might as well just have you stay. Tomorrow you're 25 weeks."
25 weeks was - somehow - she magic number. At 25 weeks, suddenly the doctors were will willing to be more proactive.
And so it was that my poor husband went home alone in the wee hours of the morning, and I began a short but intense hospital bed rest, where I was given steroid shots to help Anastasia's lungs develop, met with a neonatologist (a doctor who specializes in treating preemies), and took a tour through the NICU that had me in tears.
It's hard to believe it's been a year. It feels like it just happened yesterday.
NOW, on to Anastasia-is-as-cute-as-a-button news: Our dear girl is growing fond of saying "I love you." Actually, sometimes she says "I love" quite clearly, but the "you" is garbled. But most of the time, she says the entire thing so that we know what she's saying, but it isn't enunciated clearly. Sort of "Uh ove u."
She likes to lay on the floor with me and touch my face and say "I love you," and last night, she called out "Daddy!" This got hubby's attention, so she waved. Then she said "I love you," and of course her daddy had to pick her up :)
August 10 (part II)
Anastasia achieved three firsts today. :) The most exciting was that she fed herself. I was giving her applesauce (another first, as she usually refuses it), and she grabbed the spoon. So, keeping my hand on the very end of the spoon, I let her do with it what she would. Sure enough, she brought it straight into her mouth, took the applesauce off, and removed the spoon from her mouth! I guided her to scoop up more food, and she put the spoon in her mouth and ate again...and again...and again...and again. In fact, her third first today was that she ate an entire baby food container of applesauce. That's the first time she's ever eaten the recommended serving size!
August 11, 2006
I think Anastasia is sick. She's been running a fever (between 99 and 100.6 degrees) all day long. When she's teething, the fever's not usually so persistent. She's also vomited a little and refuses almost all solids.
Her grandpa was sick with cold-like symptoms plus a fever several days back. Of course, before he knew he was sick, he was touching her. Even though he washed his hands, he could have given her his sick germs. So far, though, Anastasia hasn't had any cold-like symptoms.
I really hope she feels better tomorrow. She deserves to have fun at her first birthday party!
August 13, 2006
We had a really great 1st birthday yesterday. :)
Thankfully, Anastasia's fever disappeared in the night. (It must have come from really bad teething - not a virus. Interestingly, though, her fever is back this morning.) But I was still worried that it might be a tough day, since Anastasia's not used to being around a lot of people. She did just beautifully, though. I'm really proud of her.
The morning of the party, Anastasia wouldn't nap; she knew something was up! So grandma's first task was to rock Anastasia to sleep while my sister and I decorated and prepared food. (My sister and her family came all the way from another state, just as they did for Anastasia's baby shower.) Shortly before family and a few friends arrived, Anastasia awoke and ate and was fascinated to find herself in a birthday wonder land. She was captivated by the balloons, streamers, and banners...So much so that we're keeping some of them up for a little while.
We didn't have a huge crowd - but at one point Anastasia found herself surrounded by admiring females and began pouting and crying real tears. I took her outside for a little fresh air and not-so-close quarters, and she was happy again.
A special guest also dropped by: the doctor who delivered Anastasia. He hadn't seen her since she was in the NICU, and we were delighted he took the time to visit for a little while. He also brought Anastasia a special gift: a little tin case he'd personally engraved; inside is a rare piece of mediorite that can only be found in Czechoslovakia, his native country. What a sweet memento!
Anastasia did well through the opening of packages...although she wasn't interested in "ripping and tearing" as I'd hoped. Her favorite part of the presents was a particular pink bow, which she chewed on for a good half hour.
I wasn't certain that Anastasia would be the least interested in her birthday cake, either, but I still got a cake just for her, so she could do whatever she wished with it. As soon as it was put in front of her, her hands were in it. I gave her a taste of frosting, and that was all the additional encouragement she needed! We found a food she likes! But even more than eating it, she really enjoyed squishing her hands in it. (Finger paints, here we come?)
It's so hard for me to believe it's been a year since my baby was born. At her party, we couldn't help but discuss what a miracle she is, and how she's changed us all. Only a little 16 lb. girl, but already she's changing lives! What a blessing.
At the end of the party, Anastasia was worn out!
August 14, 2006
The verdict is in. Anastasia's favorite birthday present was...a yellow rubber duck. She has barely had it out of her mouth since she first saw it :)
Among my favorite gifts, however, was really a present for my hubby and me: a drawing of Anastasia, beautifully matted and framed. My sister found an up-and-coming artist (Jonathan Koch, who's also a political cartoonist for The Washington Post) to draw Anastasia's portrait based on a photograph. In fact, the artist has Anastasia's drawing on his website! You can view it here. And here's the photo it was based on:
Taken in May of 2006, when Anastasia was 6 months corrected age.
I hate to single out any presents, because each was heartfelt in the giving and in the receiving. Thank you to everyone who participated in celebrating Anastasia's first year, whether it was by sending an email, giving a gift, or visiting with us at the party.
August 14 (part II)
Anastasia saw her physical therapist today for the first time in over a month. (Her PT was on vacation during that time.) It was traumatic. In part, I'm sure, because she hadn't worked with the PT in a while, in part because she wasn't feeling well due to teething, and in part because the PT threw out a new diagnosis: ataxia.
This, apparently, is a symptom, not a disease; it can be caused by a great many things. Generally speaking, ataxia is a lack of coordination. Movements are often jerky - not smooth. Ataxia can affect any part of the body.
The PT thinks Anastasia has a mild case. She said: "On a scale from 1 to 10, with 10 being the worst, she's probably a 2." She feels that while Anastasia will continue to improve, the ataxia will not go away. If she has ataxia, she won't excel at physical activities, and may be slow at writing, running, typing...
The therapist notes that Anastasia hates it when the PT shifts her position "too quickly," she panics when she feels unsupported, and her movements are often jerky. She also says children with ataxia are sometimes slower to develop the ability to eat solids.
I'm really in shock, and we find ourselves resisting this diagnosis. Maybe we're just in denial.
We can see that yes, she likes to feel supported and that yes sometimes her arm movements are jerky. But would a child with even mild ataxia be able to smoothly bring an object to her mouth? Anastasia does.
It's a difficult thing to do any research on this, simply because there are so many types of ataxia. But what I've read suggests that more than mere observation is needed to diagnose ataxia.
So...we have lots of questions to ask the next time we see our PT and doctor.
And in the meantime, I wonder: Is my gut reaction correct (just as it was when G-tubes and ROP surgery were mentioned)? Or...?
August 15, 2006
As Alexei and I talked last night, we became more and more convinced the PT's assessment was off. Although Anastasia tends to be "jerky" and panicky at her therapy sessions, she isn't like that at home. Yes, sometimes her movements are jerky or "coarse" at home, but more often they are smooth. So unless the jerky movements of ataxia can come and go, this doesn't make sense to us. And I can't recall Anastasia ever freaking out at home because I moved or shifted her quickly. Also, at therapy she's always stressed; this could be why her movements are more jerky with the PT.
I belong to several online groups of parents of preemies, and one parent pointed out that a great many preemies have some form at ataxia...it's just that the baby's doctor doesn't label it this way. Instead, the doctor may say, "She's a little clumsy." Which, I guess, would be a slight case of ataxia? Is Anastasia clumsy? I can't really say, since she's not crawling or walking yet...and since all babies are clumsy when they're learning new skills.
Still, the idea that ataxia could just be thought of as clumsiness is reassuring. The PT made it sound like Anastasia's life would really be affected by this, even if her case is mild. She wouldn't be an athlete or a dancer, her writing would be slow (making test taking tough), her running would be slow, and when she grew up, she'd probably never pass a field sobriety test - even while sober.
At the very least, we have lots of questions for the PT.
On the lighter side of things, though, at the beginning of Anastasia's therapy yesterday, we had some fun. As the mom, it's my job to distract Anastasia as much as possible while the PT makes her work. (Otherwise, Anastasia would cry the entire time.) The PT has many toys laying around for just this purpose. I picked up a plastic hammer that, when it strikes something, lights up and makes funny cartoon-like noises. I was hitting myself in the head with it and making funny faces. Anastasia must have a Three Stooges kind of sense of humor, because she was giving us great big belly laughs. The PT loved especially loved it, because she's never heard Anastasia laugh. :)
August 16, 2006
It appears Anastasia caught a cold at her birthday party. Thankfully, it doesn't seem to be bothering her even as much as her last cold did.
Anastasia and I have been working on standing; she does this now without any bouncing, and I can just hold onto her hips and she'll stand for several minutes. I'm also trying to get her to sit more on her own, but she tends to either throw herself forward onto the floor - quite dramatically - or backwards into my arms. It reminds me of what one of the neonatologists said of her while she was still in the NICU. "She's a spunky baby. That's helped her a lot while she's been here, but I won't comment on what it might mean when she's a toddler or a teenager!"
How right he was! She is darn spunky. For example, I've been trying to get her to feed herself some Cheerios. She is perfectly capable of this; she constantly picks up toys and puts them in her mouth, and she can easily pick up very small objects. But when she realized I was trying to get her to feed herself, her stubborn streak came forward. She wouldn't pick up the food. So I took one of her hands out from beneath her high chair tray and tried to put the Cheerio in it. She stuck her lower lip out, dashed her hand back under the tray, and opened her mouth wide. I think her philosophy of life is: "Why should I take the trouble, since mommy can do it for me?" So...I took the Cheerios away. I won't offer them as "must eat" food - so if she wants them, she'll have to feed them to herself!
August 19, 2006
Now we all have Anastasia's cold. Ugh. Actually, it's a bit more than your average cold, as it comes with a fever. Anastasia seems to be feeling better, but I feel like death warmed over. My husband is just beginning to get sick.
I'm hoping that as she continues to feel better, Anastasia will start eating more. It seems like a futile hope. Feeding times get more difficult each month. Yesterday, Anastasia cried when I put her in her high chair :( Please, if you feel moved, pray that our girl's eating will improve...that she'll feel hungry and be able and eager to drink lots of formula and eat lots of solids.
Mostly, Anastasia resists the formula, so when we go to the feeding clinic on Tuesday, I'm going to ask if I can put just a little juice in each of her bottles. Maybe if I give some variety to the flavor, she'll be more eager to drink.
August 19 (part II)
Today is the second time Anastasia has wanted to feed herself with a spoon. This time I caught it on camera! She was a bit messier this time, but hey! Isn't avacado supposed to be good for the complexion??
August 21, 2006
I think we have our hands full. :) Yesterday evening, Anastasia spent a good portion of her time trying to figure out how the buckle on her bouncy seat works. She studied it closely, and fingered it when she thought we weren't looking. When she realized we were watching, she dashed her hands away and grinned mischievously. I think she's her daddy's girl! (As an example of his dexterity and early mechanical ability, when my hubby was just two years old, he removed the hinges from an old Victorian door in the house, then sat back and watched and laughed when someone entered and the door swung all over the place. Thank goodness he couldn't reach the top hinges!)
Today, Anastasia is scheduled to get some vaccinations at the pediatrician's. That should be fun.
August 22, 2006
We had a long session at the feeding clinic center today. We began by having Anastasia weighed and measured. She's about 16 lbs. 9 oz., and 27 3/4 inches long.
We then saw the RN, nutritionist, and physical therapist. Unfortunately, Anastasia remembers all too well that the PT fed her barium (for her swallow study), so she started crying the moment the PT handed her food. When I took over the feeding, she was a little more receptive, but was increasingly tired and cranky, despite my best efforts to get her there hungry but not famished, and as well rested as possible.
The RN (and later the developmental pediatrician) reviewed Anastasia's growth curves with me. Oddly, her curve looks better on the full-term baby chart (using her chronological age) than it does on the preemie chart. But on both charts, her growth has slowed. More troubling is that it's not just her weight that's dropping off the curve; now it's her height, too. The question is whether this slowing is caused by poor nutrition or some other cause.
We talked about adding calories to Anastasia's formula with different powders or oils, but for various reasons, these were determined to not be a good choice for her. The nutritionist said she really preferred to keep Anastasia on formula until she's one year corrected age, but ultimately decided that we should try mixing formula with Pedisure, to see if this would help Anastasia's eating and growth improve.
The PT and nutritionist both agreed I'm probably holding Anastasia back with her eating. Of course, they didn't put it quite that way. But when I told them I didn't think Anastasia was ready to eat pancakes with syrup, they looked shocked. I told them she gags on these kinds of "big girl" foods. The PT's reply was: "Let her gag!" Apparently, the gagging and vomiting may just need to be worked through. "You have a small window for her to learn how to eat regular food. If you don't utilize it, things will only get worse," the PT said.
So...I'm on orders to offer Anastasia pretty much any food (except peanut products, honey, or hard carrots), including sandwiches with meat (finely diced, like tuna), pieces of pizza, cheesecake, string cheese - even Cheetos! (When my husband balked at the latter, the nutritionist looked him in the eye and said, "I don't care about the bad stuff in them right now. She needs the calories.")
I'm also supposed to alternate feedings with the bottle and with the spoon. For example, in the morning, I might give her a bottle but no solids, and at the next meal, I'd offer solids and perhaps just a little formula to drink - if she's interested at the end of her meal. So by the end of the day, she'll have three meals where she drank formula only, and three meals where she ate solids with perhaps just a little formula.
At the time, I felt very frustrated by this part of the visit. I wanted to say: "You try taking her home and having her vomit all the time while you coax her to eat every three hours!" Um...yeah, I've been a little stressed. And the feeding clinic folks really don't deserve that attitude. They are always warm and helpful...
Next, we saw the developmental pediatrician. First he addressed Anastasia's reflux. Upon my descriptions, he felt we needed to try to get her reflux under better control. (The Prilosec she takes gets rid of the acid in the refluxing fluid, but it doesn't actually prevent reflux.) So he perscribed Reglan. Yup, that's right. The stuff I took for a while to up my milk supply.
Because the stuff made me so depressed, I asked if this was a common side effect in children. He said no, but also admitted that with little ones it might be difficult to know whether or not the drug is affecting their mood adversely. He also said that Reglan seems to really work for some children (by getting the food to pass the stomach more quickly, thereby giving the body less to reflux up), but doesn't seem to work at all for others. So we're to try Reglan for a couple of weeks and see what happens.
If it doesn't help, the next step is to send Anastasia to a GI specialist. That could, potentially, lead to surgery to correct her reflux. Or it could rule out reflux as the main problem.
The doctor also said Anastasia's behind in her gross motor skills - which, of course, we already know. He said he was concerned, but unable to make any diagnosis at this time. I mentioned that the PT thought Anastasia has ataxia, but I wondered what might be causing the ataxia. He said he didn't know, but also mentioned that an MRI might be in order.
Apparently, all those ultrasounds Anastasia had done of her head when she was in the NICU may not tell the whole story. Ultrasounds can't see the lower back part of the brain (cerebellum), and ataxia is caused by issues in this part of the brain. An MRI might shed some light, but we agreed that we'd take a "wait and see" approach. The good news, as the doctor pointed out, is that Anastasia is still making progress with her motor skills. If she had a serious problem, she wouldn't be progressing.
The RN picked up on my frustration and stress...I guess her clue was when I started crying. So the doctor also made a point of telling me that it's not my fault Anastasia isn't eating well. Intellectually, I know this, but as her mommy, it's one area I somehow feel I should have control over. But as the doctor said, "You only have control over what you offer her. Everything else is up to her." I knew it already, but it was still nice to hear.
I also confessed that a great deal of my stress comes from the fact that I keep wondering if they're going to give Anastasia a G-tube. The doctor was very comforting about that. First, he showed me how low on the growth curve she'd have to be for them to really consider a G-tube. Thankfully, she has a ways to go before she gets there. He also mentioned the variety of tests they'd do first, to rule out certain medical issues that could be causing her to eat poorly. And finally, he explained why a G-tube isn't so awful. "If you don't like it, it can always come out," he said.
I mentioned that so many babies with G-tubes never learn to eat orally - and as I said it, realized this is true only with babies who've never eaten orally at all. "And if down the road Anastasia does need a G-tube," the doctor continued, "you may find that it makes eating a much more pleasant experience for her. She can eat for the joy of it, instead of feeling stressed because you're wanting her to eat more than she desires. In the end, she might end up eating better that way."
This is not to say that eventually Anastasia will need a G-tube, but it was great for me to know what the general plan is regarding her care. I know I don't have to fret (just yet) about surgeries.
As you can see, we have a lot to digest. It can be overwhelming to hear that your baby might need an MRI, might have some serious underlying issues, might this, might that. But I just remind myself that God is in control. There's no need for me to stress out or fret because he's got it all taken care of. I remind myself of that a lot these days :)
August 23, 2006
Whenever I write about new plans for Anastasia's eating, I get a lot of email. Mostly, it's broken down into two categories:
Most (but not all) of the folks in the first category are people who've never had a baby who doesn't eat well. They tend to suggest eating lots of vegetables and fruits, or sometimes smoothies. Bless them, because I know they want to help, and it's hard for them to understand that Anastasia is way beyond that. Above anything else, this girl needs calories. Since she won't consume a lot of food, we must choose foods that are high in calories.
I wonder, too, if I make it sound like Anastasia is only eating Cheetos and cheesecake. Rest assured, she's not. She mostly gets "good" food like avacado, beans, oatmeal, and applesauce.
I also want to clarify that Anastasia's main problem right now isn't about eating solids. It's that she won't take her bottle or cup. And because she's only about 8 1/2 months corrected age, she really should be getting most of her calories from formula. We're trying to make up for the fact that she doesn't get enough formula calories to maintain her weight by offering lots of high-calorie solids.
A few folks were also shocked at the PT's response to Anastasia's gagging. This is my fault, because I neglected to say that we don't think Anastasia has a sensory issue. They've looked at her for such issues repeatedly. Instead, it appears that Anastasia pushes the food to the back of her mouth before she's chewed on it - hence the gagging.
And when I said that the doctor wanted to "wait and see," I was referring to the MRI. There's nothing yet that points to a specific label for Anastasia's motor skill ability. (In fact, I guarantee that if I were in someone's body without amniotic fluid for five weeks, and then spent 133 days laying in warming beds, incubators, and hospital cribs, I'd need physical therapy, too!) Anastasia's motor skills are being treated with physical therapy every single day.
But I certainly don't mind people emailing me about these issues. In fact, I love getting your emails! And I always appreciate it when someone takes the time to try to help my little babe.
So far, I'm encouraged by Anastasia's response to the half formula/half Pediasure bottles. Yesterday, she gobbled them right down. She seems to love the flavor. This morning was less encouraging, as she only took about 2 1/2 oz. But she also hadn't had any of her reflux medications yet.
Last night, I also realized that I completely forgot to say anything about Anastasia's pediatrician appointment the day before yesterday. It went just fine; Anastasia fussed a little and gave dirty looks to the pediatrician, and while she cried at the shots, the crying only lasted a minute. The doctor was concerned about her eating, and wants to see her a little sooner than is typical, but she also appreciates that we're working closely with the feeding clinic. She ended by saying, "She's really doing remarkably well, given her background." Always nice to hear :)
August 23 (part II)
I just got off the phone with the feeding clinic RN who handles Anastasia's case. She confessed that she really feels Anastasia's eating issues are reflux related. "We've kind of dilly-dallied and waited for her to outgrow her eating issues, but now we really need to be aggressive. In my opinion, if we can get her reflux under control, she's going to be fine. Her eating skills are good for her age, so that's not the problem."
She said she and the pediatrician just reviewed Anastasia's dosage of Prilosec, and feel that it could be increased a little. However, they don't want to try upping it until she's been on the Reglan for a bit. (If we start one medication and up another and she suddenly gets better, then we don't know which medication did the trick.) So, the revised plan is to do Reglan, and if that doesn't work, up her dosage of Prilosec, and if that doesn't work, send her to a pediatric GI specialist.
Because I've had a lot of emails about Anastasia's gagging and the feeding clinic's response to it, I asked her to clarify their thoughts on this issue. She says they feel it's just that Anastasia hasn't had much in the way of solid food experience. In other words, she just needs more practice taking foods that need to be chewed.
August 25, 2006
Each day, Anastasia becomes more and more of a daddy's girl. She so looks forward to her daddy coming home for lunch, and waits anxiously for him to come home for the night so he can hold her and play with her. A couple of nights ago, my hubby had some outdoor things he wanted to accomplish. I followed our usual routine of eating and then getting Anastasia to sleep...but she wouldn't go to sleep. After a while, she started saying "dada" and "daddy" over and over. When it was two hours past her bedtime and she still wasn't asleep, I called her daddy inside. The two played for a little while, and then Anastasia went right to sleep. She was not going to miss her daddy time!
Anastasia also has a keen sense of humor. She loves it when I do silly things - especially to music. A friend gave us a CD called "Kid's Stuff" with the King's Singers and actress Judy Dench. It's mostly calming, beautiful music, but there are a number of fun tunes on it, too - including "Yellow Submarine." Anastasia loves this song, and will laugh hysterically if I do silly imitations of 1960s dances to it.
I'm not sure what to think of her new eating schedule just yet. She's barely eating more solids than usual, and she ends up eating less formula. Every day, her intake gets better, though, so I'm giving it the weekend before I make any changes. I'll weigh her this afternoon, just to make sure she's not loosing weight.
The Reglan hasn't helped so far, either.
August 26, 2006
Normally, I try to keep my entries on this website centered around Anastasia, but sometimes I think it's good to give you a glimpse of what's going on with her parents, too. Last night, for example, I spent the evening at a local theatre, watching some friends perform in a musical; my hubby stayed home and cared for Anastasia.
It wasn't until I got to the theatre that I realized I really haven't been out much (other than to go to doctor's offices, the hospital, or the store) in about a year and a half. I felt like I was suddenly living someone else's life...or that I had just walked into another dimension. My life pre-Anastasia seems almost unreal...Did it really happen? Or was it just a dream?
The whole evening was surreal, and made me realize how secluded my life has become. I enjoyed myself. (It was especially nice to catch up with old friends I hadn't seen in eons). But I enjoyed myself in an odd, detached sort of way.
I suppose life will be like this for at least another nine months, since RSV season is fast approaching. But once it's late spring, Alexei and I imagine we'll feel more free. The threat of germs to Anastasia's health will be greatly reduced, and we hope to gradually introduce her to more people and places.
August 27, 2006
Anastasia's been making some strides in her motor skills this week. Most notably, she's sitting up much more frequently. I can't just plop her on the floor and let her sit on her own yet, but I can put her on my lap or between my legs and either not hold her or just barely touch her knees and she'll sit for 15-20 minutes. This is very encouraging, since the doctors have all been concerned she wasn't sitting much yet.
The other day, my hubby also had Anastasia standing by herself with her arms on the couch. However, she needs to be properly motivated to do this (i.e., the kitty needs to be sleeping on the couch).
Yesterday, I was holding Anastasia on my hip while I brushed my hair with my free hand, and she looked into the mirror and started laughing. She seemed to be staring at herself, so I'm not sure if she suddenly realized the baby staring back at her was herself...or what. But it's always a joy to hear her laugh. There's nothing more beautiful than babies laughing!
She continues to make me mildly jealous, too. Out of 100 words she speaks, 99 of them are "daddy." Last night, for the first time, she very purposefully threw out her arms to say "pick me up," and it wasn't me she was looking at. Nope. She was practically throwing herself into her daddy's arms!
August 28, 2006
It's been six days since Anastasia last went to the feeding clinic. I can't see that her reflux is any better yet on the Reglan. She's eating considerably less from her bottle and cup. And it doesn't seem as though she's eating much more in the way of solids. However, I weighed her this morning, and she's gained two ounces! That's a great weight gain for her in such a short amount of time. (That brings her to 16 lbs. 11 oz.) That Pediasure must be making the difference!
I also find myself less stressed about Anastasia's eating...mostly (I think) because I only give her three bottles a day now, and two are while she's sleeping. (She always eats pretty well when she's sleeping.)
August 30, 2006
Yesterday, Anastasia had lots of visitors, including my in-laws. She's not as familiar with them, and cried when my mom-in-law tried to hold her. So I hung onto her for the rest of the visit. Anastasia continued to be pouty until I showed her grandma and grandpa how well she can stand (with me holding onto her hips). They applauded her, and suddenly Anastasia was all smiles...for the rest of the visit! I think I have a little performer on my hands :)
Anastasia now has a paunchy tummy. (Yea!) And as long as she continues to gain weight, I have to say I love this new eating plan. It is much less stressful for both of us because I don't have to struggle to get a bottle down her at each meal. Here's how we do it:
First thing in the morning, I offer Anastasia a bottle (half formula, half Pediasure, making the bottle 27 calories per ounce). As I wash up bottles and do dishes, I sometimes offer her something she can feed herself, like a Zwieback toast. Usually, she doesn't eat much of it, but it's good practice. Most often, though, I just offer her a toy.
At her second meal, I offer about three different solids. Foods we currently use include: Underwood meats (which are chopped finer than tuna), breaded chicken strips with lots of ranch dressing, avacado (she still prefers it mixed with formula, instead of mayo), waffle with lots of berry-flavored syrup, applesauce (because she loves it), yogurt, and pudding. Once she starts refusing solids, I offer about an ounce of the formula/Pediasure mix. She'll typically only take about a quarter of this. Then I offer her something she can feed herself, like Cheetos or pieces of chopped up cheese. (She likes to feed herself cheese sticks, but has a strong tendency to get tons of cheese in her mouth and not know what to do with it. This results in gagging...So I only occasionally offer her a complete cheese stick.)
For her next two meals, I also offer solids. By her fifth meal, it's evening, and she's sleeping; I offer her an 8 oz. bottle, which she'll usually finish or come close to finishing. Finally, at about 11:30 pm, I wake up and offer another 8 oz. bottle, which she usually comes close to finishing.
August 30 (part II)
At 9 months corrected age, Anastasia is sitting 100% independently!