April 3, 2006
This morning, Anastasia had her eye exam. Again, we were dreading it, because it's always made her scream bloody murder. But much to our relief, she handled this exam extremely well. She only cried a tiny bit, and that was at the very end of the procedure. Better yet, the doctor gave her the all clear! She won't need another exam until she's two years old. Yeahhhh!
April 4, 2006
I talked with the clinic this morning about Anastasia's low heart alarms. They suggested that further involvement was more in the domain of her pediatrician. They also suggested I should mention to our pediatrician that the cardiologist knows about the issue and has suggested using a heart monitor to see if they can find a problem. Sooo...something to mention on Friday when we see the pediatrician.
April 6, 2006
I just discovered something outrageous. I received an email from a stranger, claiming that someone had stolen photographs off this website and created their own website on Babies Online, claiming the child in the photos as her own. (Actually, she claimed she had twins, a boy and girl, and identified photographs of our Anastasia as these twins.) The person emailing me offered up screen shots of the website as proof, and I have no reason to disbelieve her, although the Babies Online website is now viewable by password only. Needless to say, I've emailed Babies Online about the infringement, and I expect they'll not only tear down the site in question, but will ban the user forever (or as much as is possible).
Clearly only a sicko would create a website about fictitious babies - one who supposedly died and another who is struggling for life. This is what's most outrageous - that someone would create such a story (using Anastasia's photos!) so they could receive pity from strangers, when there are many of us who've actually had to deal with the hell of having a baby in the NICU. Such people belittle real-life pain and suffering by their self-centered, fraudulent actions.
So if there's anyone else out there even thinking about stealing photographs or text or even a general story line off this site, let it be known that when I discover you (and I will discover you; it's impossible to hide on the Net), I'll not only have your website taken down, I'll sue for copyright infringement and anything else I can think of, in order to prevent further fraudulent actions.
April 8, 2006
A few more words about my last post, and then "enough said!" I've visited the bulletin board where the person in question posted links to her fraudulent website, and it's clear she was seeking attention and sympathy. As far as I know, she wasn't seeking donations of any kind. The most disturbing thing to me, though, was that she used a birth day photo of Anastasia, with a caption beneath it that said, in effect, "This is my baby just before it died." It gave me the heebie jeebies, and made me cry a little. When the photo was taken, Anastasia was truly struggling to hang on to life. I'm still in the process of tracking down the offender.
Now, on to more important things! Anastasia had a checkup with her pediatrician on Friday, who seemed pleased and surprised at how much she's grown. (She now weighs 13 lbs. 13 oz., and is eating much better.)
Poor Anastasia began wailing the moment I started undressing her for the exam. Big tears fell down her face until we had her safely back in the car. I think she thought she was going to get another of those painful RSV shots.
The pediatrician spoke with a cardiologist about Anastasia's low heart rate alarms, and both of them felt it wasn't anything to be concerned about, but since another MD and cardiologist were surprised and concerned about those alarms, we decided to go ahead and have Anastasia wear a diagnostic heart monitor. Next week, we'll drop by the hospital and get her all hooked up. It's my understanding that she'll wear the thing for a few days, and then (assuming all is well) be free of all monitors. I really don't think there's anything wrong with her heart, but I also believe it's prudent to make sure my instincts are right!
And now, a photo of Miss Anastasia. I have to say that she's becoming like her mommy. I used to pout whenever my photo was taken, and Anastasia has taken to stubbornly refusing to smile when she sees the camera...The moment I tuck it away, though, she's all grins!
April 10, 2006
This morning, I had a call from a state organization that does in-home care for children with developmental issues. They'd been referred by the state nurse who visits us periodically, and who thought they could help with some physical therapy. Well, after an extensive interview, they said that Anastasia's development was well within normal parameters. "Hold on," the woman interviewing me said. "Let me talk to my supervisor and see if Anastasia qualifies because she was an extreme preemie." She told her supervisor all of Anastasia's medical history, to which the supervisor kept saying, "Ooooh, ooooh," as if she expected this child must have some serious developmental issues. And then she heard Anastasia's developmental "score." "That's amazing!" she cried. "Yep," I said, "Anastasia is a miracle baby!" So, in the end, she didn't qualify for the services because her need for physical therapy is questionable. But they will be calling again and doing another interview in two months, to make sure Anastasia's needs aren't more severe at that time.
Anastasia is still 99.5% bottle fed, but this weekend, I gave her a taste of some avacado. I figure it's a great baby food. It's high in calories and "good fat." I mashed it up well and brought it to room temperature, but when she got some in her mouth, I soooo wished I had the camcorder running! Her little eyebrows raised high, her eyes got big, and her jaw dropped. I've never seen her look so surprised and grossed out. She closed her mouth and few times and tried to swallow, but finally she spit the stuff out. Ah well, we'll try again another time!
Speaking of feeding and such, my milk supply has taken a very sudden and large dip downward. I'm doing all the same things I always did to keep my supply up, but now I must pump after each of Anastasia's feedings, or she won't have milk for her next bottle. I've also had to lower dramatically the amount of milk I put in each bottle. Anastasia's only getting 1 oz. of breast milk to 4 oz. of formula per meal. (The doctors say it's important to have a mix of both in each feeding, as it's easier on her tummy than going back and forth between milk and formula.) I was debating when to quit pumping, but had decided to plod onward until Anastasia's first birthday, in August. I was afraid that if she got sick after I stopped giving her milk, that I'd blame myself. (Milk has all those good antibodies that formula does not.) But, it looks like my body may determine that I'm quitting sooner! It's quite frustrating to pump for 20 minutes or a little longer, only to get a few teaspoons of milk.
This afternoon, we're taking Anastasia back to the hospital (!) to have a heart monitor put on. Of course, ever since this monitor was ordered, she hasn't had a single low heart rate alarm. But hopefully, the new monitor will pick up at least one dip, so they can see if it is normal or not. Originally, I thought we'd pop upstairs and visit the NICU, while we were there. I know there are nurses, doctors, and others who'd like to take a peek at Anastasia. But Alexei fears taking Anastasia out in public and having her get sick. So our visit to the NICU will have to take place on another day (when RSV season is over).
April 11, 2006
Anastasia now has her heart monitor...in addition to her apnea monitor. The heart monitor is a lot smaller, though - about the size of an MP3 player, and has a handful of wires that stick on various parts of her chest. Anastasia smiled and flirted shamelessly with the guy who put it on.
She's supposed to wear the monitor for two days, then we must go back to the hospital, have them download the data, and clear it. Then she wears the monitor one more day before we bring it back for good. We're praying that the monitor gets a chance to read some low heart rates. So far, she hasn't had any alarms (of course!). We want to give the doctors everything they need in order to either say "everything's fine" or "something's wrong."
In the meantime, the monitor is a pain. It ties onto her body, and Anastasia wants to eat and pull on those ties, so I have to keep her in clothes that cover it up, yet provide enough room for it, too. It makes burping difficult, also. (I'm back to the NICU way of burping; putting Anastasia in my lap and leaning her forward, so her chin is resting in my hand). Tummy time is impossible.
Wearing her heart monitor (black) and apnea monitor (blue). The heart monitor is in a black cloth bag.
Ready to go to the hospital. The cow is one of her favorite toys.
April 12, 2006
Eight months ago today, Anastasia was born. Wow. Time flies! At the end of the month, Anastasia will be five months, corrected age.
This evening, we take Anastasia into the hospital again, to have data downloaded from her heart monitor. We won't learn anything about the results until the testing is all done, but I was glad (in a way) that yesterday afternoon Anastasia had some low heart rate alarms during her nap. At least it will give the doctors a look at what's happening.
April 14, 2006
On Wednesday, we took Anastasia back to the hospital for a quick switch-a-roo. They took off the heart monitor she was wearing and replaced it with a new one, to collect new data. Then on Thursday, Alexei dropped off the second heart monitor. Her heart rated dropped below 75 three times while she wore the heart monitors; it's possible there were also times her heart dropped below 80, which is the threshold most people seem to agree is healthy for babies. We don't expect to hear anything back until late next week, since the results have to be studied by a cardiologist at the children's hospital, which is several hours away from us.
We also just received the call that there's still a lot of RSV in our area, so this afternoon we're taking our dear one down for her two shots. Poor thing. (A few of you have asked what the RSV shot is. Synagis is what it's called, and it contains antibodies that are specific to RSV.)
In happier news, Anastasia has slept through the night twice in a row. It's paradise for me, who hasn't had sleep without frequent or long interruption for eight months!
April 17, 2006
Well, Easter was kinda on the sad side. Alexei was (and is) sick with a sore throat and a fever, so he's sequestered away from us, and of course we couldn't do any of the usual Easter stuff, from church to family gatherings, because Anastasia and I are generally sequestered, anyway. But Easter is all about the greatest miracle, so it's tough to be sad for very long. And I spent all day with one of the "littler" miracles, dressing her up and watching her have fun with the Easter basket and stuffed animals her grandma brought over.
April 17 (part II)
Several people have emailed and asked whether Anastasia is continuing to sleep through the night. The answer is no. She did it twice, then reverted to her old ways! :)
April 19, 2006
Yesterday, we received the written report from the cardiologist who checked Anastasia's PDA (heart murmur). Since we'd already talked with him, there was no news there, but I delighted in one of his phrases: "This little baby has done remarkably well given her prematurity." The doctors can't say it often enough for me: Anastasia is astonishing. I'm so proud of her, and so thankful to the Lord.
In other news, Anastasia is trying to sit up. Yesterday, I put her in the bouncy seat and carried her into the kitchen while I cooked. As I carried her, she craned her neck to see her daddy (still sequestered in the living room), sitting mostly upright. Since the bouncy seat is not fully reclined, I can't quite say she sat up on her own, but this was a first step!
April 20, 2006
I apologize if yesterday's post was confusing. I was referring to the written report for the echo Anastasia had several weeks back, checking on her PDA. It had nothing to do with the recent heart monitor she was on, and the results from that study.
But I did hear back on that study today. The results were sent to a pediatric cardiologist, who proclaimed Anastasia just fine. They can see no abnormalities in her heart. When I asked why Anastasia might be having low heart rates, then, the reply was, "Well, most babies aren't on monitors, so their parents would never know their heart rate was dropping in deep sleep. She's sleeping soundly, and her body just doesn't need for her heart to be beating quickly." Our pediatrician then asked how we felt about taking Anastasia off her apnea monitor. I thought the idea was exciting (!), but wanted to discuss it with Alexei first. This afternoon, he said that if a pediatric cardiologist said Anastasia is fine, then he can't see any reason to keep her on the monitor, either.
So, yipee! No more dragging around that monitor! No more wrestling with it when I change her clothes or her diaper. No more lugging it around in her stroller, or on my shoulder when I carry her around the house. No more screaming machine when we turn it off or on, or when one of the leads comes loose. Exciting, indeed! But also a little scary. I'm sure I'll be waking up a lot more at night, checking Anastasia's breathing.
So, the doc has to fill out some paperwork, and then the company who rents the monitor will call. This will probably take a few days, but if I'm brave, maybe I'll take Anastasia off the monitor tonight!
April 21, 2006
I'd hoped to be able to shout out today: WE'VE GONE WIRELESS! But Alexei nixed the idea. "When the doctor signs the paperwork, then we'll unhook her," he said. So I'm humoring him. Still, I find myself eagerly anticipating a wire-free baby!
April 23, 2006
No, we're still not quite wireless.
But, on a positive note, my milk supply is coming up a little. The Reglan prescription I take in order to maintain that supply is really starting to bother me, though. It tends to make me depressed, and now I have nightmares all night. Taking a couple of tablespoons of flax seed each day seems to help counteract this, but still, I wonder how long I can continue to take the stuff.
Alexei is still sequestered in the living room with his cold, and Anastasia and I pretty much spend all day in the nursery in order to stay away from him. This weekend, I just had to get out, even though Alexei is reluctant to have Anastasia and me walking around the neighborhood alone. (Overprotective papa bear, and all that.)
For the first time, I wore Anastasia in her front carrier facing out, and she was all eyes for everything. No sleeping this time! Today, after our walk, I put her in the stroller while I did a little gardening. She was pretty cute, kicking back and putting her feet up on the tray, as if it were her own little ottoman.
April 24, 2006
The company that rents out the apnea monitor called this morning; they are coming to pick up their equipment this afternoon! I'm so excited. Kinda scared, too. Nice timing, though. Anastasia is now 5 months and 1 day, corrected age :)
April 24 (Part II)
Drum roll please! It's official; we now have a WIRELESS BABY! The medical supply company took the monitor away, so there's no turning back now! :)
April 26, 2006
Yesterday, a day after she rolled from back to tummy for the first time, Anastasia had a physical therapy appointment. It didn't go as well as we'd hoped. "Well, we can rule out the worst forms of cerebral palsy," the physical therapist said. Rule out the worst? Worst only?
Turns out, last time the PT saw Anastasia (which was an extremely brief visit in the middle of a checkup), she'd been quite concerned because Anastasia's head was still bobbing around. Cerebral palsy was the first thing the PT wanted to look into. (Since that time, Anastasia's head is much less prone to bobbing.)
Unfortunately, Anastasia cried the entire hour and a half we were with the PT, making a good examination of her skills very difficult. (She began crying when we placed her on the scale; we think she's associating getting weighed at the doctor's office with getting painful shots, so next time we'll do the weighing last.) Still, the PT said Anastasia appeared to be two months behind in her physical abilities. That, too, threw us through a loop. Anastasia has met all her milestones, except one: When on her tummy, she doesn't raise her torso up by getting onto her hands; she gets onto her elbows only. The muscle weakness, the PT says, is significant on her left side, making her quite asymmetrical. "Babies are very symmetrical," the PT says. "They don't favor one side over the other yet."
So the PT gave us a series of exercises to do with Anastasia at least four or five times a day. We even have to hold our dear girl differently. No cuddling, at least not for long. We're to hold Anastasia away from us, so her trunk muscles develop better.
Also disconcerting is the shape of Anastasia's head. It's beginning to change because she's always laying on her right side. In back, the right side is a bit more flat than the left side, and in front, it's more bulgy. So we have head-turning exercises to do, too.
The RN also popped in and asked about Anastasia's weight. She wasn't thrilled with her slow weight gain (13 lbs. 15 oz.) and is wondering if we need to up her calories by mixing her formula a little thicker and feeding her more solids (or trying to!). They even suggested putting butter in her solid foods, to up the calories; I didn't think about it until we were home, but that won't work. Butter is a dairy product, of course...and I've been abstaining from dairy for months now because it upsets Anastasia's tummy. They also mentioned possibly doing a barium swallow study for Anastasia's reflux. "We'll see what her weight is like in two weeks, when she comes back for physical therapy," the RN said.
Overall, Alexei and I are discouraged. In part, because we thought Anastasia was doing better, and don't like hearing that she still could be diagnosed with cerebral palsy. And in part because things were just beginning to normalize. Anastasia wasn't fighting feedings (although she can always eat better), and her monitor was finally gone. We're tired, and were hoping for a reprieve. But we're trying to look on the positive side. Things could be so much worse, and at least we can actively take part in helping our daughter through the PT exercises.
To top it off, Alexei saw a gastroenterologist who thinks Alexei's reflux has been untreated for so long that his esophagus is probably pre-cancerous. They will be sticking a tiny camera down his throat for a better look in a couple of weeks.
This morning, doing physical therapy exercises. She's supposed to be leaning on her hands, not her elbows, the lazy girl :)
April 26 (part II)
I've received several emails from people, asking when Anastasia can get out and about in public. Although RSV season will probably be over in a month or so, Anastasia still won't be able to go into large crowds or anywhere anybody is sick. Her lungs are still too damaged, and a simple cold could still send her to the hospital and back on a ventilator. With the end of RSV season, though, the risk does go down. So, no stores for some time, and no being around little kids, who are often sick.
Also, I want to thank everyone for their kind words and - especially - their prayers. We can always use your prayers, and our little girl can especially use them now.
April 27, 2006
Well, I've done a little research on Anastasia's head tilt (called ) and in my non-medical opinion, I think she has a relatively mild form of it. I also wonder why nobody mentioned it sooner, since a baby who was without amniotic fluid for over five weeks would seem to be a ripe candidate for this problem. But I feel better, now that I'm more educated about the problem. I think, perhaps, all of Anastasia's muscle weakness is probably due to my lack of amniotic fluid.
So, we're doing the physical therapy exercises at least four times each day, plus (whenever possible) holding her so she has to use her torso muscles. Anastasia hates it, but seems to tolerate it better with each session. She hates tummy time the most, and any time I try to get her to prop herself up on her hands, she cries and cries. Poor thing.
She always falls fast to sleep right afterwards, and she seems to be eating better, too. She's slept through the night several times in a row, and took her first two 6 oz. bottles this morning.
The county nurse who first suggested physical therapy called me yesterday and asked if I wanted her to advocate for Early Intervention services for Anastasia. (This government program rejected Anastasia a few weeks back, saying she was doing too well to qualify for their services.) Early Intervention called this morning and said that as long as they can see the report stating that Anastasia needs physical therapy, she will qualify. So that's in the works. The bonus is that Anastasia may be able to see a physical therapist more often...and if Early Intervention comes to our home, it will save Alexei time off work. It will also save Anastasia from so much exposure to germs.