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How to Help Parents of Preemies
Anastasia's first year (2005)
Eating & Reflux (year 2, 2006)
Back to Sleep! (2007)
And Zane, Too (2008)
Allergies & Getting Big (2009)
Starting School (2010)
It's All Good (2011)
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April 2008
April 1, 2008
It seems the recent Norwegian study saying former preemies are more likely to face infertility and other health problems has been reported everywhere. But what I've rarely seen pointed out is that the scientists were looking at preemies born between 1967 - 88. That means scientists have little or no idea how this study applies to "modern" preemies, because the way preemies are treated today is a world away from how they were treated even in the late 1980s. Heck, there have been health care changes in how preemies are treated in just the 2 1/2 years since Anastasia was born!
Some parents of preemies feel there is too little information out there about the negative parts of preemie life beyond age 2. They feel doctors paint too rosy a picture of what preemie life is like. I actually feel quite the opposite. In my experience, doctors painted too bleak a picture of what we should expect. Now, I readily admit Anastasia is a miracle. She has had few health concerns compared to many other preemies. But it's just plain wrong to say cases like hers don't happen regularly.
In fact, the bleak picture that was painted for us about how unhealthy Miss A. would be was directly related to the fact that most doctors wanted us to abort her. And told us that repeatedly. I think studies like the one I linked above also tend to be reported with this in mind. There are an awful lot of modern Eugenicists out there who simply want any babies who might have disabilities to be killed before birth. Oh yes, I know many of them appear to only want what is "best" for the baby. Because we all know that life with a handicap simply isn't worth living, right? It's hard for me to imagine these people can't see how valuable all human life is...
Okay, off my soap box now.
Miss A. is mostly recovered from her cold, but hubby and I are sick now, and unfortunately the main symptom is utter fatigue. This weekend, my mom came over to watch Anastasia for me. Just having her be responsible for entertaining Miss A. was extremely helpful, but I also slept three hours. I did the same thing on Sunday! So I haven't been very good about updates. Here's the scoop:
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We bought Anastasia a toy Dyson vacuum for her second birthday, but just before she received it, she developed a sudden fear of vacuums. Needless to say, she hadn't touched the toy. Then on Saturday my mom suggested she play with it. She shook her head "no," but I told her it would help Mommy a lot if she vacuumed. Swallowing her fear, Miss A. tentatively touched the vacuum. I haven't been able to stop her "vacuuming" since!
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Yes it's spring, but Miss A. still talks about Frosty the Snowman regularly. A typical site: Miss A. staring out the window saying, "Fosty aaaallll melted...."
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(Said while I gave her a long hug.) "Mommy loves me. I love ice cream."
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"I wary snoozy." (That's "sleepy" to the rest of us.)
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"Baby in Mommy's tummy. Baby in mine tummy, too!"
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(After throwing her doll face down on the floor...hard.) "Poor baby! I give kiss. Make feel better." (Then she does the whole thing over again.)
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Miss A.'s friend Mr. E. lent Anastasia his VHS of Riverdance. She watched it for the first time with her daddy. I was in another room, but I could hear her: "She did it! Yeeeeaaaah!" "Good job!" and lots of clapping. Now when she watches the video, she gets up and dances. Some of this dancing is typical toddler marching, but sometimes she actually mimics the dancer's moves. For example, she'll do kicks and turns.
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Anastasia is suddenly very interested in telling me who gave her stuff. All day I hear things like: "Aunt Lisa gave me this shirt," "Grammy gave me this bwace-let," "This bunny from gran'ma."
April 4, 2008
Well, I saw the perintologist (high risk pregnancy doctor) today. It took two and a half hours. Miss A. started getting a little high strung in the waiting room. She and her daddy left before I even got in to see the doctor.
First, I saw a geneticist. I told her upfront we weren't interested in any testing with side effects, or testing that wasn't 100% accurate. "Under no circumstances would we abort this baby," I said. She was very friendly, and suggested we just stick with ultrasounds, then. But if something comes up where the doctors feel the baby would benefit medically from some other sort of testing, we'd discuss those tests then. It was a relief they weren't going to fight us on this!
The geneticist carefully went through our medical history, marveled at Anastasia's success ("That's not what we usually see. It's not what we expect," she said), and then began asking me questions about the boys on my side of the family. I have a nephew (my sister's son) who is autistic...but he's never seen a specialist and he's not in the school system. This raised a red flag for the geneticist. She asked if he had any brothers. (He has one, who is healthy.) She asked if I had any brothers. (I have one, and he's healthy, too.)
Then she told me that something like 10% of people diagnosed with autism actually have Fragile X, which is a form of mental retardation that has symptoms like autism. It's the most common cause of retardation and is particularly difficult for families because people with Fragile X tend to have angry or violent behavioral problems (though they may not appear until the teenage years). If passed on by a woman, that woman's sons have a 50% chance of having Fragile X.
Because my nephew hasn't been diagnosed by a developmental pediatrician or a geneticist, she thought there was a possibility he actually has Fragile X. She explained that a blood test would tell me whether or not I was a carrier. She then went on to talk about other things. Later, she came back to Fragile X: "Since you wouldn't terminate, I don't feel strongly that we need to do that test." I said, "Well now that you've taught me all about it (!), I think it wouldn't hurt to take the test." So they drew my blood. If I'm a carrier and we have a son, they would do a blood test on him before he left the hospital. This would tell us right away whether or not he was affected by Fragile X. (Otherwise, a diagnosis usually isn't made until age two or three.)
"I expect, however," she said, "the baby is just fine. I see no reason to worry."
I'm not worried :)
Next, they did an ultrasound. Bun's first ultrasound (with my regular OB) was vaginal, but this one was just through my tummy. Bun looks healthy and is about two inches long. The ultrasound operator actually said the baby is the correct size for being 12 weeks, too...So I guess there is some guessing going on about Bun's age. (It makes sense to me to go with the younger age, though. I'll be having a C-section, and we don't want the doc to take the baby too early.)
Finally, I saw one of the perintologists. He was very friendly and glad to hear how well Miss A. is doing. He basically said doctors know next to nothing about PROM, and therefore there's nothing they can do to prevent it. I asked him about additional testing for infections, and he said that would probably be fine, but pointed out a recent study where they took a group of pregnant women with BV and treated only half of them. The half that were treated were more likely to go into preterm labor! Doctors aren't sure why, however, and generally think it's better to treat infections in pregnant women.
He did recommend the progesterone shots. He said in my case it would only help if my PROM was due to premature labor (and not vice versa), but that in any case the shots wouldn't be harmful. I asked if the hormones have any negative affects on the baby, and he said they do not. So, as I expected, I will be starting those shots soon.
He also wanted his office to do the big 18 - 20 week ultrasound (where they look at every inch of the baby...and can often tell parents the baby's gender), and I have an appointment to do that at the end of next month.
I did have a few throat-tightening moments, especially at first. I found myself studying each woman who came through the office doors and into the waiting room. Was she crying? Thankfully none were, or I might have lost it. But overall, it was a positive visit.
April 11, 2008
I have a new plan. It just doesn't work (as we've proved time and time again!) to try to get Anastasia to drink during meals. If we're lucky, she'll take a couple of sips, and that's it. We are reluctant to give up Miss A's one bottle (which she gets after going to sleep, while I hold her), partly because of calories. She is a thin girl - though not unhealthy-looking. I have to take in all her pants at least an inch and a half. But we mostly worry about fluids. We're lucky to get 8 oz. down her during the day, so that extra 8 oz. from a bottle makes a big difference.
Still, I'm tired of giving her that bottle of Pediasure. I want a break before Bun comes along! Too, she's almost three years old. Way too big to be drinking from a bottle. So here's what I'm going to try.
This morning, I weighed the Miss. She's 26 lbs. and 6 oz. I've given her an 8 oz. cup of juice with her Miralax mixed in, per usual. She usually drinks most of this while watching a movie in the afternoon. After that movie, I'm going to take her cup away. Then, about an hour before her bedtime, I'll give the cup back to her, but with Pediasure in it. Her second "big drink" of the day is usually right before bed.
I don't really expect her to drink the full 8 oz. But I'll be watching her weight and her wet diapers closely. If she doesn't loose weight, and if her diapers are wet enough, then I won't go back to her dream feeds.
April 9, 2008
I'm still sick (and wanting - but not getting - lots of naps), so here's a quick rundown of a few Anastasia incidents:
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When we took Miss A. to the perintologist with us, she was pretty well behaved - but she did want to wander around the waiting room, shouting at the top of her lungs: "I wary shy!"
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I overheard Anastasia saying this to her daddy a few days ago: "Good girl, Daddy! I proud you!"
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As I was putting the stroller away on a day I'd said we'd go for a stroller walk, but the rain interfered: "I can go walk! I can!" (lots of tears)
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A new development is the assertion of her own ideas. Typically, it goes something like this: "No, no, no, no, no. I can't eat mine chicken! No, no, no, no, no. I can eat mine cookie!" Fortunately, these are not temper tantrums and she's pretty good natured about it all.
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Miss A. is very big on routine. One afternoon, she got poop on her bedclothes, so I had to wash them. By bedtime, they were still in the dryer. I explained this (because I know from experience she gets upset if I change her blankets), and she seemed to understand why she needed to use her kitty quilt instead of her doggie quilt. But when it came time to lay her down, she freaked out. "Take away! Take away!" she cried, holding her kitty quilt out. Nothing would console her, so I checked the dryer. Her doggie quilt and favorite knitted blanket (which she uses as a pillow) were dry. As soon as I gave them to her, all was well.
April 11 (part II)
Well, my new plan was a failure today. Miss A. drank her full 8 oz. of juice, but only took perhaps an ounce of the Pediasure. It was an unusual night, however; some friends dropped by briefly. So...we're going to try again tomorrow.
Anastasia decided this was a good way to have her daddy read to her.
The good part of today was that it was gorgeous outside, and I took Miss A. to the playground. She was so excited (I'd told her in advance that we were going) that as I finished up some chores, she was busy trying to put my shoes on my feet :)
She had a grand time. She swung for ages, then tried every single slide - repeatedly. I see quite a difference in her playground behavior since last year. She is much more daring, wants to climb stuff by herself, and actually enjoys going down the slides.
There were a couple of children about her age who were also at the park. One, Miss A. decided, was a "baby" (she was 2 years old), and Anastasia was quite the mother hen around her. When the "baby" tried to follow her up some difficult steps, for example, Miss A. said, "No, baby! Go back! You get hurt!" She also fretted when the "baby" tried to follow her down a slide. The rest of the time, though, she was happy to have a "baby" to hug.
Also, while we were out, I had to use a public restroom. I put Miss A. in her stroller, and brought her into the stall with me...And she proceeded to announce - at the top of her lungs - everything I did in the stall. And um, yes, there were other people in the bathroom.
April 12, 2008
First, the good news. Actually, it's fantastic news! This evening Anastasia drank 7 oz. of Pediasure from her sippy cup! It took some work on my part; mostly I used the ol' "Drink your milk or go to bed" trick. Occasionally, I'd say, "Is it bed time?" and Anastasia would reply, "No! I can drink!" And those 7 oz. were on top of about 14 oz. of juice today. (It was a warm day.) Please pray that Miss A. continues in this direction and that we can totally discontinue her bottle feedings.
The bad news is that not only is my cold suddenly worse, but now Miss A. has another cold. No doubt she caught it from me. I'm soooooooo ready to be able to breathe again! This cold has me really worn out.
The other bad news is that I simply cannot eat anymore yogurt. Or drink anymore cranberry juice. I just can't. I wanted to consume these two things to reduce my risk of infection (and therefore PROM), but I can't stomach the stuff any longer. I do take a pro-biotic, so I don't feel too bad about nixing yogurt and cranberry juice. (Besides, do you know how difficult it is to find cranberry juice that isn't laden with either corn syrup or some other sweet fruit???)
I also really, really want to soak in a nice hot bath. (But won't, because it might increase my risk of infection.)
April 16, 2008
Yesterday I had an appointment with my OB. She gave
me the results from the tests she conducted at my last visit - which
were all negative for bad things. Apparently, they did find a little bit
of yeast at my last visit, and didn't call to tell me about it because
it's not considered to be connected to PROM or premature birth.
Medication was considered optional. (I didn't have any noticeable
symptoms.) But yesterday, there was no yeast at all. (Maybe those
probiotics are actually doing something!) In fact, the doctor proclaimed
I was in excellent health. My blood pressure is excellent and I haven't
gained any weight since my appointment a month ago. (I'm chubby, so this
is a good thing!)
The bun's heartbeat was also good.
The plan is for me to start getting progesterone shots in about three weeks. The shots aren't manufactured; I must have them compounded at a special pharmacy. The nurse will show my hubby how to administer the shots at my next appointment. I'll get one each week. The shots (which I think our insurance will not pay for) are $125 every 10 weeks. Not nearly as bad as I expected.
I also asked my OB about the baby's movement. I swear I've felt the bun moving a couple of times, but I thought it was much to early for that. Yet my OB says that if the baby and the placenta are in just the right position, it's quite possible I did feel the baby move. This is especially cool to me because I never felt Anastasia moving inside me.
Oh, and have I mentioned that I received the bill for my Fragile X testing (nearly $500, and of course they neglected to bill our insurance)...but nobody's called me to give me the results. Very classy. When I'm feeling a bit better, I'll call and harass them for some answers :)
Anastasia is continuing to take her Pediasure in her sippy cup each night. Glory, Hallelujah! She's been such a good girl this week. I have a terrible cold, and hubby has had the flu, but she's been very understanding and well behaved. Here are some cute things she's been doing:
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Although Miss A. has stayed well while her mommy and daddy have been so sick, she's had a runny nose off and on. When she wants me to wipe it for her, she says, "Wipe tears from mine nose, Mommy?"
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The other night, Anastasia wasn't eating her fish sticks, so her daddy decided it was a good idea to put a little Tabasco on them. A few moments later, Miss A. interrupted my conversation with her daddy by saying, "Brain freeze in mine mouth!"
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I recently bought Miss A. a small lot of clothes off eBay. When they arrived, she jumped around, clapping her hands. "Oh thank you, Mommy! Thank you!" she said. I washed the clothes right away, but Anastasia wanted to look at them; she kept saying, "Where's mine clothes?"
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I also bought her a pair of tennis shoes that have butterflies that light up when you walk. She's had them on all morning, stomping to make them flash. :)
April 21, 2008
Both hubby and I are still sick...although we're starting to feel better. So this Sunday we thought we'd splurge and go to a restaurant for breakfast. We haven't done that since Anastasia came home from the NICU.
I was pretty nervous about taking Miss A. into a restaurant. It's still RSV season - and I had visions of her trying to run all around, yelling at the top of her lungs, and throwing food at people. I needn't have worried. Before we went inside, we told Miss A. we expected her to be on her best behavior: no throwing food, no making loud noises, etc. She seemed pretty intimidated by this as we took her into the restaurant and sanitized the table and booster seat.
Then she sat quietly, colored, played with sugar packets, and was fascinated by the waitress. When she'd loose site of her, Miss A. would say, "Where's my lady?" Later she said, "That lady brought you food!"
We were very proud of her!
April 23, 2008
Well, I think I can now safely throw away Anastasia's bottles! Whoo-hoo! Every day, she drinks her Pediasure from her sippy cup a little more easily. She now even expects it, and asks for her "milk" right after dinner.
And now it appears she may have outgrown her reflux. This weekend, when I tried to pick up her refill of Prevacid, the pharmacist said they needed to contact the prescribing doctor because the insurance wanted some sort of confirmation. Fine...except that meant Anastasia would have no medicine for at least a day. But she also didn't have any reflux symptoms that day. It's now been four days, and Miss A. has no sign of reflux.
The doctors in the NICU did tell us Miss A. would outgrow her reflux eventually...I just didn't believe them. :)
Miss A. playing outside a few days ago.
Anastasia is getting bigger in other ways, too. She used to freak out if we suggested she take a stuffed animal to bed. She didn't want anything in the bed with her except a blanket. Then a few weeks ago, I got her up from a nap and found she'd pulled a stuffed animal into her crib and fallen asleep with it. Now at bedtime, she wants to choose an animal to take to bed.
We have made no progress with potty training, however. I think she's just not ready...although - on very rare occasion - she will tell us she went, then ask for a clean diaper. I'm thinking I'm going to have to put her in panties and training pants (or, as our Early Intervention lady suggested, put her in panties and then some Pull-Ups) and let her feel soiled. But I want to wait until I'm well and a bit more energetic.
A tummy shot from this morning.
April 24, 2008
This morning, Anastasia had an appointment with her eye doctor. Most children don't see an eye doctor until they are about to enter school, but because Anastasia had ROP while she was in the NICU, the doctor wanted to follow up on her sooner.
You may recall that ROP is common eye condition among preemies, and is encouraged by giving them too much oxygen. (Unlike adults who are given oxygen, you don't want an infant's oxygen saturation levels to be near 100%. In the low 80s is about right.) If left to itself, ROP causes blindness. (Stevie Wonder's blindness was caused by too much oxygen as an infant.)
Shortly before Miss A. left the NICU, her eye doctor thought he'd have to operate because of her ROP. This surgery isn't without its side effects (primarily, it greatly reduces peripheral vision and the child usually must wear glasses from infancy on), so we were relieved when the doctor sought a second opinion. It turns out determining whether to do surgery or wait and see if the ROP clears up on its own is a bit of an art, and the second opinion was to wait.
Shortly after Miss A. came home from the NICU, she had another appointment with her eye doctor. Her ROP had entirely cleared up on its own. Still, things can still go wrong, and both my hubby and I have lazy eye, so everyone agreed it was a good idea to do yet another check up.
We started preparing Miss A. for this visit yesterday. We told her she was going to see a doctor who would check her eyes and make sure they were healthy. We explained that he'd shine a bright light in her eyes, but that it wouldn't hurt. We told her the doctor is a nice guy who is a daddy to several children.
She didn't seem worried until this morning, when she was very fragile about - well, everything. We kept reminding her that it wouldn't hurt and that the doctor was there to help her. We told her mommy and daddy would be in the room, too. And repeatedly we told her the doctor was a nice guy with children of his own. This last part seemed to calm her the most.
Unfortunately, there was a lot of waiting around once we got to the doctor's office. Anastasia got pretty antsy, but she didn't misbehave. She cried a lot when the assistant came out to the waiting room and put drops in her eyes. We'd neglected to talk to her about this part :( When at last we saw the doctor, we could see Miss A. was examining him closely. He was extremely gentle and sweet with her, and she quickly realized that yeah, he was a nice guy. The exam itself went smoothly and the doctor was extremely pleased with what he saw.
"I don't think you have to worry about her eyes at all," he said. This is what we expected him to say, but it was still great to hear.
We won't have to take Miss A. in again until she's about seven.
Isn't it amazing how suddenly Anastasia seems to be over all her preemie-related stuff??? Thank you, God!
April 24 (part II)
This afternoon, the geneticist called. She said she'd just received the call about my Fragile X test. Happily, I am not a carrier. :)
April 26, 2008
First, I want to share a great resource I just discovered. It's a website called Be Not Afraid. If you've received a difficult prenatal diagnosis, you'll want to visit this site full of true stories about people just like you, resources, and a message board to help you connect with other parents going through a similar situation.
Ok, now for some Anastasia stuff:
Yesterday, as we were checking some items at a store, Miss A. said loudly, "Mommy, she a girl."
"Yes, honey, this lady [checking our groceries] is a girl."
"I a girl. Mommy a girl, too."
"That's right, honey."
(As the checker put our bags in our cart.) "Oh, thank
you! Thank you, lady!" (And as we left.) "Bye, lady! Bye-bye!"
We've been reading Mr. Rodger's The New Baby. It's an okay book; I skip a number of pages because they talk about the older child being jealous of the baby...and I figure why even put those ideas into her head? But since good books about a new baby in the house are extremely hard to find, we read this one. Anyway, one section has a photo of a baby being bottle fed, and another breastfeeding. I tell Anastasia, "This baby's drinking from a bottle, and this one is drinking from her mommy's chest."
She tends to study the picture of the breastfeeding baby with some confusion in her face. I'm sure she can have no recollection at our failed attempts at breastfeeding.
Well, yesterday I had my arm up near my chest and suddenly Anastasia was gnawing gently on it. I said, "Ouch! What are you doing?" She replied, "I drinking from Mommy's chest!"