January 1, 2006
Well, maybe that over the counter gas medicine doesn't really do a thing. Last night, Anastasia was really struggling again; she refluxed all over the place, vomiting, and bearing down and writhing. She so wanted to eat, but couldn't because of the gas pains. We're getting worried about her, and are praying she'll eat better. Our biggest fear right now is that if she continues on this trend of not eating well, she'll end up back in the hospital...with a G-tube in her stomach.
She's also refusing her reflux medicine, which can't help. Unlike the stuff she had in the hospital, this is peppermint flavored; she obviously hasn't acquired a taste for that yet, because she cries, grimaces, and spits all her medicine out.
We are frustrated and exhausted. And very prayerful.
January 3, 2006
I'm speaking tentatively, but I think we may have found the cause of Anastasia's gassiness and reflux. The day she was sent home from the hospital, her does of vitamins (which are high in iron) was doubled. I suspected from the beginning that this might be the problem, but was very hesitant to not give her the vitamins. Nonetheless, yesterday I didn't give her any. And lo! She ate well and was back to her usual laid-back self! So, I'm continuing the experiment today, to see if she continues to do well. Then I guess I'll call the pediatrician and ask if there's another vitamin (lower in iron?) that we can give our girl.
I also called our pharmacist yesterday, to see if there is a non flavored version of Anastasia's reflux medicine. The stuff was so strong of peppermint, Anastasia was foaming at the mouth. Unfortunately, there's no generic or unflavored version of the prescription, but the pharmacist suggested we dilute the stuff in water. I did this until I couldn't smell the peppermint, but Anastasia would not be fooled. She spit and foamed per usual. I've read that there's another version of the drug that you drop into water, creating a fruity drink. Maybe we can try that...
January 5, 2006
There is wonderful news today. We visited the opthamologist...an outing we weren't looking forward to. In preparation, I brought along sugar water, to give to Anastasia just before her exam. (This is something they sometimes did in the NICU, and believe it not, studies show that babies who are given sugar water before painful or scary procedures cry notably less.) I also swaddled Anastasia tight, something she doesn't care for, but which prevents her from flailing around and making the exam difficult or impossible. And actually, I discovered the exam itself was a lot less awful than my imagination thought it would be. In the end, the doctor seemed relieved, and said her eyes are significantly better. We don't have to see him again for another three months! Halleluiah!
Tomorrow, Anastasia sees her pediatrician again. I'm sure she's lost weight, but I'll make no bones about the fact this was due to her gassiness...which was apparently caused by her vitamins.
January 6, 2006
Today at Anastasia's pediatrician appointment, we discovered she'd lost 1/2 oz. I was relieved it wasn't more, but naturally, we want to ensure this isn't a trend. The doctor gave me permission to give Anastasia a half dose of her vitamins (since they were making her gassy). When I asked whether or not we could find a vitamin that didn't have iron (or as much of iron), she said there are two reasons why we wouldn't want to do that. The first is that preemies tend to be anemic. The second is that iron helps produce more red blood cells, which in turn help oxygenate the body. With Anastasia's chronic lung disease, we want to encourage lots of red blood cells.
We also discussed the fact that Anastasia has a bad habit of looking to her right whenever she's laying down. We try to encourage her to look to her left, too, but she's a stubborn girl, and thinks her right side is much more interesting. If we try to gently hold her head in another direction, she gives us her mad cry. I think she developed this habit in the NICU; when she lay in her hospital crib, she saw virtually nothing if she looked to her left, but lots of interesting things (mostly people) if she looked to her right. The doctor agreed with me. We need to re-arrange Anastasia's crib so all her toys are on her left side. Hopefully, this will be all the encouragement she needs.
I do have to brag a little, too. In the hospital, Anastasia had a mirror with a rattle-like contraption at the bottom. If you turned the rattle, lights flashed and music played. She enjoyed the music and lights so well that I searched for the same toy on eBay, and my mother bought it for Anastasia. I frequently turned the rattle for her, or I'd take her hand in mine and help her turn it. Well, now she doesn't need my help. Several times a day she'll lay in front of the toy and turn the rattle herself. Her father and I think she's brilliant :)
January 9, 2006
It seems that whenever I post something about how Anastasia's improving at home, things go downhill again. It's the same old problem: eating poorly and gas/reflux. It's taken this long (since her first doctor appointment) to get her reflux medication straightened out. She simply would not tolerate the peppermint-flavored drug, so we're having a different medication compounded for her. My husband is picking it up today at a pharmacy that's a half hour away; we hope it helps.
Our insurance company also bought us a baby scale, so Anastasia won't have to go to the pediatrician just to be weighed. (This exposes her to a lot of germs.) Unfortunately, when I picked it up, I found it to be very inaccurate. So I ordered one off eBay; it should arrive soon. In the meantime, according to the first scale, Anastasia has gained about an ounce. Which is better than loosing ounces.
Concerned about her poor eating, however, the pediatrician wants to see Anastasia in a few days.
January 11, 2006
Several of you have asked what daily life is like with Anastasia at home. I don't know how much it differs from having a full-term baby, but this should give you a good idea:
Anastasia wakes me between 4 and 7 am in the morning. I drag myself out of bed (usually having only 3 to 4 hours of sleep, interrupted) and transfer our girl from her co-sleeper (which is like a bassinet, except it attaches to our bed...so all I have to do is lean over to get to her) and into her nursery crib. I change her, and every other day, I weigh her. Then I grab breast milk from the fridge, add fortifier to it, and sometimes add liquid vitamins to it. I warm it in hot water, then feed the babe.
It usually takes at least 45 minutes to feed Anastasia. Occasionally, she'll suck down a bottle in 10 to 20 minutes, but that's usually when she's sleepy - but not too sleepy! I stop and try to burp her several times during a feed, but she tends to be very difficult to burp. I've literally spent over an hour trying to burp her, with no success, only to lay her down and several minutes later have her vomit up a burp. If I can't get a burp out of her, she (rightly!) refuses to eat any more. I try to talk and sing to her while I burp her, so she doesn't fall asleep. (I've gotten pretty good at giving motivational speeches...They work much better than the ol' "starving children in Africa" thing.) I also have other tricks to keep her awake and sucking, like rubbing her cheek or her head. Afterward, Anastasia falls asleep, and I hold her for about twenty minutes. If I can't hold her (say, I need to pump desperately), I put her in the bouncy seat or swing. It's important for her to be upright after feedings, because her reflux makes her prone to vomiting after a meal. Holding her works best, because she will sometimes - finally! - release a burp if I hold her.
Then it's time for me to pump, which takes about 30 minutes, including clean up time.
I was feeding Anastasia every two hours, which meant that by the time I fed and burped her, then pumped and cleaned up, it was practically time to start all over again. I'm now trying to feed her every three hours, which gives me time to do laundry, etc. I try to "wear" Anastasia in a front pack every day, but it's difficult since she's attached to an apnea monitor. I can't exactly lug it around while I vacuum. But if I'm at my computer, for instance, I'm often "wearing" her. I haven't yet mastered sleeping when the baby sleeps.
A half hour before her next feed, I give Anastasia her reflux medicine. I put some in a syringe, sit Anastasia up in the bouncy seat or swing, then slowly squirt it into her mouth. She doesn't like it much, and I have to watch to make sure she swallows and doesn't just spit it out.
Anastasia's apnea monitor has gone off quite a number of times since she's been home. However, it never goes off for actual apnea (where she stops breathing for more than 20 seconds); it goes off for a low heart rate, which is accompanied by no breathing for less than 20 seconds. Each time it goes off, my heart races and I jump up and call her name. Usually, between my loud voice and the obscenely loud alarm, she opens her eyes and starts breathing. A couple of times, she's been very pale, and I've had to poke her in order to get her breathing again.
We also have some fun during the day. I try to read at least one book to Anastasia each afternoon, and sometimes we just look at each other and "talk." (In fact, Anastasia is already developing a sense of humor, because she smiles when I make silly faces...especially when I pout.) We also do her range of motion exercises, which I find fun, but she just tolerates :)
In the evening, Anastasia usually does a "marathon feed," where I'll give her a full bottle, but she keeps demanding more. This is fine - especially since she hasn't yet met the minimum amount of food set for her when she was released from the hospital (600 ccs, which is, I believe, about 20 oz.), except that it usually comes right when I'm trying to get to bed. Typically, I'm up till 10:30 or 11 pm, feeding and burping Anastasia.
When I finally lay down to sleep, I set my alarm (actually, a kitchen timer, since the clock radio is on my hubby's side of the bed) for four hours, but Anastasia usually wakes me at about three hours, wanting to eat. Not infrequently, I'm up repeatedly with Anastasia because she's gassy/refluxy. And so goes my day and night.
Incidentally, I've read that some symptoms related to reflux mimic those for gas, so when Anastasia is writhing and occasionally crying from the pain in her tummy, it may very well be reflux related. I guess we'll find out when/if her reflux meds start to work.
January 13, 2006
I know a number of my friends and family think we are being over-protective with Anastasia by not taking her out in public (except for doctor appointments), and for limiting who visits and holds her. Honest to goodness, we aren't being paranoid. So that you can better understand, here are some facts:
Our main concern is something called RSV (Respiratory Syncytial Virus), which is a seasonal danger to all babies, but especially preemies. Anastasia has all but one of the high-risk indicators, and receives a monthly vaccine that helps (but does not fully) protect her from RSV.
Although adults can carry the virus and never know it, in an extreme preemie like Anastasia (yes, even one who appears like any other healthy newborn) it causes serious illness, and sometimes death. In fact, each year 125,000 American infants are hospitalized with RSV; it is the leading cause of hospitalizing infants. RSV also causes 500 deaths annually, and even in less severe cases may cause long term health problems.
You don't have to sneeze or cough on a baby to give it RSV. You may, without even noticing, rub your nose or put your hand near your mouth, and then touch the baby, infecting it.
Anastasia's hospital discharge papers make it very clear that if she gets a cold, she will be hospitalized. Her lungs are not fully recovered from her early birth and being on a ventilator, and even a minor illness can cause her serious health problems. If she becomes ill, she'll have to be transported to the children's hospital in several hours away. I'm not making that up...It's in her medical records.
So, you see, we aren't being paranoid. When RSV season is over (in the spring), we'll be more able to take Anastasia out and about (although we'll still want to be cautious; the doctors tell us her risk for being re-hospitalized within her first year home is 50%; re-hospitalization would occur if she picked up germs that caused her to become ill).
For more information about RSV, I recommend the following websites:
* CDC: http://www.cdc.gov/rsv/
* The March of Dimes: http://www.marchofdimes.com/pnhec/298_9546.asp
* The Mayo Clinic: http://www.mayoclinic.com/health/respiratory-syncytial-virus/DS00414
January 13, 2006 (part II)
Today was a difficult day. Just when I thought Anastasia's reflux might be getting better, it seemed to get worse. She spent quite a bit of time crying; the only time I've ever heard her cry like that before was when she was getting a shot. She was inconsolable, unless I held her close.
Then we went to the pediatrician. Because Anastasia isn't eating as much as the docs think she should, and because she's not gaining much weight (she's at 11 lbs. 5 oz.), they are talking about giving her a G-tube. This is a tube surgically inserted into her stomach, through which she would be given some (not all) food.
I'm a bit in shock, because I really didn't think this was going to happen. There is still hope, though. The doctor has hooked us up with a feeding clinic, who will work with us next week to see if we can get more food in Anastasia. If she's successful enough with that, Anastasia wouldn't need a G-tube.
Please, pray for our little Anastasia, that her reflux and gassiness will go away, that she will want to eat, that she will eat more, and that she will gain weight.
January 17, 2006
My initial reaction to Friday's news was shock. I cried and prayed the entire way home from the pediatrician's office. In my heart, I felt Anastasia would not need a G-tube. The next day, after a lot of research, I started to get a little miffed. There are so many things to try before we look seriously at a G-tube! We haven't even tried a prescription gas remedy, let alone upping Anastasia's calories with supplemental formula, looking at whether she has a lactose problem...or even speaking with a GI specialist. And Anastasia's reflux medicine is just now kicking in. (But she's a smart cookie and resents anything being put in her mouth that isn't milk. She's learning to spit out her medicine, despite my best efforts.)
Today, I spoke with the feeding clinic folks, and I feel better. They were very kind, and agreed there are a number of things we can try. They will soon be calling me back to make an appointment.
In the meantime, I've stopped taking Fenugreek, an herb I was digesting to boost my milk supply. I've read that sometimes it upsets babies' tummies. I'm also not eating any dairy, because I've read that it may help babies who have trouble digesting lactose. It's too soon to tell if it's really helping, but I did notice that when I had to give Anastasia milk from the freezer, she soon starting writhing around. It could be a coincidence, or it could be there is something in the milk that upsets her system.
Anastasia still looks very good. Her Buddha belly is gone, but she's also grown in length. She's bright and alert and darn smart. Personally, I don't yet think we have a serious situation on our hands. But we do have a situation that needs tackling now.
Many of you wrote with encouragement, and we so appreciate it. My husband is so worn out, he's ready to have our girl get a G-tube right away. But while I'm utterly exhausted, too, I'm also more stubborn :)
And now, because so many of you have requested new photographs:
LEFT: Anastasia with her apnea monitor. RIGHT: Our bathing beauty.
January 19, 2006
Drum roll, please! Yesterday, Anastasia ate a full 610 ccs (over 20 oz.)! Even though 600 was her target when she was sent home from the hospital, this is a first-ever, and she did it quite easily. She also gained a half ounce. We did lots of happy dances around the house yesterday.
Overall, Anastasia has done much better since I cut Fenugreek and dairy products. In the past three days, she ate well over 500 ccs (nearly 17 oz.) each day. Soooo...I suspect that cutting the herb and/or dairy is helping - although it may be, too, that her reflux meds are really kicking in now. Today, I'm back on Fenugreek, and I'll see if there's a difference in Anastasia. If not, I will add dairy back in and observe her again.
In honor of her ability to eat more, I now present Anastasia in her Piglet outfit:
This week, incidentally, Miss Anastasia graduated from her newborn outfits and into her 0 - 3 month outfits...and even some of those are now too small!
Now, the less-happy news. Today Anastasia has been very difficult to feed. And nope, so far she hasn't eaten any of the milk I'm made since going back on Fenugreek. She's, thankfully, taking decent amounts, she's just making her mama work for it!
January 19, 2006 (part II)
Well, I just had to call the pediatrician's office. Anastasia has a slightly raised temperature of 99.2 . She has no other symptoms (except fussiness, which could be the cause of the fever), so they told me to watch her and see if the fever goes down.
I hope and pray it is nothing...
January 19, 2005 (part III)
Just a quick note to let everyone know that Anastasia's fever went away on its own. I'll type more tomorrow.
January 20, 2006
Yesterday's fever (perhaps better described as an "elevated temperature") sure gave us a scare, but after being held for a while - which always eases Anastasia's gassy writhings - her fever went down to normal. So, apparently, she was writhing so much for so long that her temperature went up!
Anastasia's tummy was definitely worse yesterday; I doubt it was because I went back on Fenugreek, since she only got small amounts of new milk. Mostly, she was eating frozen, older milk (where I refrained from neither Fenugreek or dairy products). Now that my milk supply is headed upwards again, I hope we can either point a finger directly at the herb, or move on to the next culprit. (I must say, though, that once I stopped Fenugreek, I lost four pounds in four days! I've heard moms say the herb keeps the pounds on, and that they melt off once you stop taking the stuff, but I never really believed it...)
Yet, despite the tummy woes and slight fever, Anastasia ate 630 ccs! :)
Today, we are supposed to hear from the clinic about when, today, we can get down for Anastasia's RSV shot. I've been unimpressed by how this was handled, since at this point, Anastasia is due for the shot immediately and I've had to call and pester repeatedly.
January 23, 2006
This weekend, we had some of the worst days we've had since Anastasia came home. On Friday, her reflux and gassiness were so very bad. She hardly ate anything. (Only about 10 oz. the entire day.) She was grumpy and fussy (not usual Anastasia traits!), and I got pretty grumpy myself, between being utterly exhausted and making repeated calls to the doctor's office trying to get Anastasia in for her RSV shot. But the squeaky wheel does get the grease, and I managed to get her in that day. Then she seemed to have a reaction to the shot; her face was flushed, her hands very hot, and her breathing seemed slightly more labored. That's all gone now, thank goodness.
I'm once again totally off Fenugreek, and I recently read that moms of babies with reflux should steer clear of milk products. So even though I really want a slice of cheese, I'm doing without for a while, I guess. As usual, I'm trying to avoid using older, frozen milk (because my diet included Fenugreek and dairy at that time), but I have to use it sometimes, because my milk supply doesn't keep up with Anastasia. Whenever I do, though, I see our girl's reflux and gassiness get worse. Very soon, I'll need to supplement with formula, anyway.
Yesterday, Anastasia did better, eating about 19 oz. She's a happier baby today, and I expect she'll eat pretty well today, too. When she got her RSV shot, the clinic's scale put her at 11 lbs. 7 oz., but our scale says 11 lbs. 6.5 oz., and I think that's more correct.
I've been desperately sleep deprived. When Anastasia's relux/gassiness is worse, I stay up longer hours at night, holding and comforting her. I typically get four to five hours sleep at night, but it's always interrupted. I can't sleep during the day, because Anastasia eats every 1 1/2 to 2 hours, and by the time I feed and burp her, then pump, it's time to start all over again. I've tried stretching out her meals to every three hours, but she does best with small frequent meals. (Typical for a baby with reflux.) By Friday, I'm a lunatic. (In fact, this Friday I told my hubby I felt like a war prisioner. Sleep deprivation is torture, indeed!) Fortunately, my husband takes over weekend mornings, so I can sleep in. What a difference a little sleep makes in my outlook on life!
Some of you asked if Anastasia is smiling yet. Actually, she's been doing that for a couple of months, but does it more frequently now. In fact, she makes my day by looking at me adoringly and smiling big every time I give her the first bottle of the morning. She's also making lots of communicative noises, from cooing to more exuberant yells. When she's hungry, instead of just opening her mouth, like a baby bird waiting for a worm, she now sucks her hand. If she's impatient, she starts giving little yelps. And if you give her an RSV shot, she screams bloody murder. (I imagined her thinking: "Not fair! I thought I was through with all this poking when I left the hospital!!) In both a sad and cute way, when she gets hiccups, she whines about it. In short, Anastasia is adorable.
January 24, 2006
Well, today was the day, and it went well :)
Last night, on the other hand, was tough on everyone. Anastasia had true colic symptoms, including inconsolable crying. I finally took her into the nursery, set up a few quilts and a pillow and slept (or rather, tried to sleep) on the floor beside her crib. I gave her a massage, did some kangaroo care, and eventually fed her. She was actually very hungry all evening, but unable to eat because her tummy hurt so. But after only 10 ccs of milk, she fell asleep, and stayed that way for the rest of the wee hours.
By five o'clock, we were up and about and getting ready for the feeding clinic appointment, and a little after eight, the evaluation began. First, I was pleased to see the clinic's scale saying Anastasia was 11 lbs. 7 oz.. She measured up at 22 1/2 inches long. Next, we saw a RN and physical therapist. They asked a bunch of questions, then watched me feed Anastasia. Of course, Anastasia proved to be easier to feed than usual, but they could still get the jist of whether or not there were any physical problems that might account for our girl's slow weight gain.
They could see Anastasia had a good suck, but, the PT told us, because of her chronic lung disease, she wears out quickly. She had us try a special nipple made just for preemies; it's softer and allows more milk to come out with less work. It took Anastasia a minute to adjust to the new flow, but it did indeed speed up her feeding. When there was about five ccs left in the bottle, Anastasia was drifting off into dreamland, so the PT had me use a dropper to feed her the rest. She also gave me a soft, pliable cup and showed me how to hold it up to Anastasia's mouth so the milk was not pouring into her, but was just level with her lips. Anastasia eagerly lapped up the remaining milk.
The consensus was that Anastasia's feedings will improve as she gets older ("She's almost over the hurdle," the PT said), and that while she's not gaining a tremendous amount of weight, she's in the 50th percentile, which, they said, is where they like to see babies. Both the RN and PT seemed to think the new feeding devices would make a big difference, and that since my milk supply isn't enough for Anastasia anymore anyway, some added formula will also help to add calories. We discussed whether we needed special preemie formula, or formula for babies with lactose or reflux problems, but for now, they said, what I was already using was fine. (Not being able to find preemie formula locally, I'd bought Enfamil Gentlease, which is supposed to be easier to digest.)
I told them about my experiment with Fenugreek, and asked if they thought my diary experiment was valid. "It can help some babies to stay off the dairy, yes," the RN said. They suggested I try adding it back into my diet, to see if it makes a difference.
We also discussed Anastasia's apparent gassiness, and they said the massages I give, plus tummy time, and moving Anastasia's legs bicycle fashion, etc. were all good ways to help her get rid of excess gas. The PT also said that when babies suck really hard but don't get much food (as Anastasia's been doing), their stomachs start cramping. She felt the new nipple would probably take care of a lot of the problem.
Finally, the PT checked Anastasia's neck, to see if her preference for looking to one side was causing problems. She also checked her leg that tends to turn out. In both cases, she said there currently wasn't a problem, but she gave me exercises to do with Anastasia to help ensure she wouldn't need physical therapy later.
We then met with an MD, who gave Anastasia a very thorough exam. He said he wasn't really too concerned about Anastasia's eating or weight gain, noting that she was probably "overfed" in the NICU, in order to help her develop more rapidly. Now, he said, she was just finding her more natural eating habit. "We're a long way from needing a G-tube," he said.
I've been concerned because Anastasia's been constipated ever since she came home, and her stools (when encouraged by a suppository) are dark brown. Through research online and discussions with a few nurses, I know dark stools for a baby this young aren't normal and that they could indicate bleeding in the upper GI track. The doctor said, however, that stools that sit inside for a while can turn dark with "age." He recommended some prune juice to get things flowing :)
Finally, he gave us his assessment of Anastasia's developmental progress. He mentioned that while she has to be really interested to allow her eyes to follow something, and while she tends to turn her eyes, but not so much her head, he wasn't concerned. "So, is she pretty much on track developmentally?" I asked. "Not pretty much," the doctor replied. "She's right on track." (Yeah!)
So, we felt it was a very helpful morning. Some of my concerns were confirmed, while others were answered in a more positive way than I expected. We feel relief, and are so glad we had the opportunity to visit the clinic. What a great group of compassionate and helpful people.
When we came home, it was more than time for Anastasia to take her reflux medicine - something neither of us really enjoy. But today, I had a special device for the job: a pacifier designed to hold medication. I was doubtful Anastasia would like it, since she now rejects all pacifiers, so I dipped the nipple in milk before giving it to her. And lo! She sucked her medicine right down! (She may not do the same tomorrow, but today, we had victory!)
And while currently Anastasia is crying and fussy because her tummy hurts, I feel change in the air. I think she'll soon be feeling (and feeding) better. We're scheduled to go back to the clinic for a weigh in two weeks from now, and we'll see how she's progressed, I hope! In the meantime, here are some photographs from today:
January 27, 2006
Anastasia definitely seems to be making progress with the new nipple. It took her a bit to get used to the faster flow of milk, but yesterday she ate 690 ccs (about 23 oz.), her most ever. Her individual feedings have increased from a typical 70 ccs (2.3 oz.) to about 90 ccs (3 oz.). Yesterday, when I weighed her, she was 11 lbs. 10 oz. Best of all, she no longer starts crying and writhing inconsolably in the middle of her feeds! I never would have dreamed her pain could be caused by a nipple!
However, now I'm back to struggling a bit with giving Anastasia her reflux prescription. She's figured out that the special pacifier is just a sneaky way of giving her medication, and this morning, as soon as I turned my back, she spit half of it out. (She'd convinced me she'd swallowed it, too!) She's a smart one, that girl!
January 28, 2006
Two bits of great news:
1. Anastasia weighed in at 11 lbs. 14 oz. yesterday.
2. Anastasia slept a full 7 hours last night!
Can you see me grinning???
January 31, 2006
Anastasia still continues to do well with her eating. Monday, she ate 710 ccs (over 23 1/2 ounces), and I think that will soon be the norm. She takes almost all of this by the bottle; whenever I try to feed her milk with the dropper, she gives me an annoyed look and promptly spits out the milk. In fact, on Saturday, the dropper inspired her first attempt at a laugh. I was dutifully giving her milk with the dropper, and she was just as dutifully spitting it out, and when I told her it wasn't nice to vex her mommy like that, she got a big grin and let out a hearty "heh! heh!"