Long Winter

Mallorie's had a rough winter season, with some respiratory stuff, and now some gastrointestinal thing, but she seems to be coming out of it.

I probably definitely bring her too late to be seen by her pediatrician when she gets sick. Believe me, this is NOT because I think I know how to handle everything, but more like I think I'm supposed to know. When I call the office for an appt, and they ask, "What's wrong?" (to write down the purpose for the visit), I stumble for words, wondering, if this is a time when I'm being silly. I should and do know how to handle diarrhea and vomiting, by now. Clear liquids awhile. Slowly advance to more foods. Avoid lactose for a little while. Right? So I figure I will get to the office and hear, "Well, you know what to do."

Monday, when Mal got her last RSV immunization for the season, I wasn't surprised to learn her wt was down. It was 20.5 lbs, her usual low. I'd do a not-me and say I didn't start giving her soy protein, since about a week prior, I triggered some diarrhea and vomiting and diaper rash by giving some whey protein, but I'll just admit I did. Gave her whey, and yes, I know it's dairy and that she is allergic or something to dairy. And gave her soy protein because I was in a panic and realized she needed more calories than she was getting and more protein. Matthew had sat down with me one evening, and using the blenderized diet book and reading labels on jars of baby food, unintentionally made me see just how little she was getting each day, while I was appropriately giving her pedialyte when she wasn't tolerating milks.

Yes, I remember Dr. B's comment that she didn't necessarily have to gain weight, but she just didn't want her losing weight, because then she was moving in the wrong direction. Well, I swallowed all the responsibility for the weight-loss, and drew the straight line between Pedialyte (at 100 calories per liter vs milk at 100-ish calories per 5 oz) to weight loss, and decided to start adding things again. You don't even want to know all that Matthew and I decided she should have, but I bought a bunch of canned meats, Dinty Moore beef stew, and soy protein powder, and went a little hog wild with her diet, plus olive oil.

Took me a day to realize she was also running a fever, and since her tummy didn't take so well to the new diet, maybe the combination was that she had what Matthew and Jacob had had? Or maybe just moving too fast, again!

Took me another couple of days to realize that she look weak. And really felt pretty light. And when she got extra sleepy about mid-week, I called the pediatrician's office. Know this first: Dr. B is pretty popular, and you probably want to call the day before or early in the morning if you want to beat the throngs making their way to sit at her feet. So are her colleagues. So calling at 1:30pm is silly, but I was lucky enough to get an appt with one of them. Here's what I learned:

Her weight was down to 20 lbs, with her clothes on, and a big granny diaper. Poor baby can't have a working mom and wear all cloth diapers when she's having diarrhea, sorry. Especially when her mommy and daddy are up all night dealing with babies vomiting and having the kind of diarrhea diapers that cause rashes.

I lose the forest for looking at all the trees. Yes, I even knew this before, but apparently, knowing it doesn't prevent it! Dr. W smiled, and told me to step back a bit, look away from the trees, so I could see the forest. Then he walked me through the steps which I already knew, but had to shut my mouth and listen to ... because I really wasn't following the rules! She probably has some sort of stomach virus, so clear liquids till she can go 8 hours without vomiting (and he gave us fluid rates, since she was probably somewhat dehydrated, I loves me some numbers!). After 8 hours of no vomiting, we could drop the rate, and see if she could take some soy milk (doesn't have the lactose that breastmilk has), and work slowly, slowly moving beyond with the diet. He assured me that Mallorie, like any other baby, can go a little while without "proper nutrition." I cannot tell you how very badly I needed to hear someone tell me this. Another couple of trees for me .... I worry about protein intake whenever Mallorie gets her diaper rash and it won't heal, and about calories whenever I actually do a calorie count. I worry about her heart's VSD not closing, ever, because of inadequate nutrition. Heck, I worry a lot.

After all we've learned about Mallorie and soluble fiber, you probably won't believe I had already given her a whopping dose of oatmeal plus rice cereal the night before we brought her to see Dr. W. Thank God, she barfed the first time we tried that. And it's also good that when I spoke to Dr. B the next night, she told me giving her cereal when her gut was still messed up was rushing her too fast, because that meant she only got cereal the one time. Because last night she was screaming the cry we recognize from when I've done this before. We gave her lactulose and 2 enemas, and I've asked all the kids to remind me to put the cereal down the next time I get a bright idea that she can "take it" if she has watery poop. She can't.

Some things I've learned:

I don't need to wait till Mallorie is quite sick to bring her in to be seen by a pediatrician. Even if they do actually look at me funny, and tell us she's fine, it's OK.

I can't remember one other thing when I try to figure out calories, or protein, or some other detail. Pediatricians are good about helping someone like me with the whole picture.

I love Dr. W. And who knew he'd be so good at calming me down, considering Mallorie weighed in at 20 lbs, and mommy guilt oozed out of me in that moment of truth.

But I missed having Dr. B lay her gorgeous brown eyes on our baby.

Dr. B says it is always OK for me to bring Mallorie in for even minor illness. That it's what she's there for. And when I spilled out some of my crazy (how I worry over her VSD/protein intake/calories/what-have-you), she told me I could let her worry about her. And when I said, "So, OK, it's on you," she agreed. And here is a rough quote: "Yes, you are absolved of all responsibility, if you let me handle it." Apparently, by how light I felt at the end of that conversation, I was in need of a dose of absolution!

Dr. B is the queen.

And her colleagues also rock.

Mallorie is in some very competent hands.
Ignore the dates. These are from today. I couldn't figure it out in time to fix this, and am NOT going to try moving them from the camera to the computer, again. This was already over my head!






What Jacob says it takes to make Mallorie smile. As if he needed an excuse! :)

Need a New Name for Puke

This blog thing is not Mommy's cup of tea, after all. But just so everyone knows I'm fine, here's a recap.

Saturday, Sunday, Monday
I wake up, play, listen to music, get lots of kisses. Mommy decides it's Serious Food Days, so I get beef, chicken, boiled egg yolks, peaches, yogurt, applesauce, bananas, green beans, squashes, brown rice, peas. Not all at once, sillies. But I do really well, and everything seems OK. Then I puke Monday evening and night.

Tuesday
Mommy decides the puking I did through the night might have something to do with pooping too much and decides maybe the magnesium/vitamin C stuff she gives me is "too poopy," and she doesn't like how my diaper rash just stays so bad. So she decides it's a day to try Warm Water With Prunes, instead of magnesium stuff. Yummm. All day I poop, get milk, listen to music, play. And puke. I use lots and lots of those cool new flannel wipes Mommy and Matthew sewed just for me,

and wipe out my supply of cloth diapers.


Wednesday
Mommy decides I'm pooping too much, and because she hates that my butt still looks bad, she decides it's a Barley Cereal Day, and so I stop pooping, just like that. I get milk, puke, and get lots of baths, so I smell great, anyway. I listen to Raffi. I puke some more. Mommy refuses to call it reflux, because she hates all talk of surgeries to treat reflux and puking. No idea why she calls it puking. Maybe we should call it a name no one else knows, except the family! :) Mommy hits the "volume" button on the feeding pump at about 10 pm, because she thinks it's a cool thing to have on a pump.

Thursday
Mommy decides early in the morning that I need a haircut, and everyone tells her to put the scissors down. Even Ida calls from the hospital! So I play, and puke throughout the day, and because I'm puking so much, when she gets a call at work, Mommy decides it was because of trying to fit feedings in around therapy yesterday. Or maybe The Barley Day. But everyone forgot that we were going to do only liquids on therapy days, because they digest faster and can fit in between therapy sessions. So she says only Pedialyte all day, to let my stomach rest a little bit, and let me get lots of fluids in, so maybe I can poop again.

And I get Lactulose, which I personally hate, because it makes my tummy cramp. But I sure do poop! No one even talks about cloth diapers, wipes, anything! They even pull out the disposable pads Becca gave me the other day! I puke a lot, too. Mommy's at work and everyone at home thinks I can't get pedialyte or anything if I puke, so I don't get much today, because ... I keep puking. But I do get a haircut. I even gag and try to puke there. Mommy comes home from work and goes straight to bed, because she's been sick all day. I moan a lot at night and Daddy stays by my crib most of the night, rubbing my head and playing with my (little bit of remaining) hair and aiming my fan at me to help me calm down. Mommy's worried I might be sick, too, but she goes back to sleep.

Friday
Mommy gets up kind of late, because she thought she was going to stay home from work, she was so sick all night. She hits the "volume" button on the feeding pump, and reads something like 517. What? in a day and a half, she realizes, that except for one milk bottle early yesterday morning, I got only Pedialyte, by pump ... but I puked so much that everyone was holding my feedings most of the time. She realizes that I better get some fluids, and fast! She decides she LOVES a feeding pump, because she'd never know that the real reason for all my puking wasn't about pooping, prunes, barley, other solid foods, or anything. Just like how I never gagged or puked all those days in the hospital with IV's going, now Mommy and Daddy think it's how much I drink! Mommy and Daddy both feel silly, but seriously. Most babies just get fed when they cry, "in case" it's why they are crying. If they aren't hungry, they won't eat. No one does that with me, because I eat with my tube! So Mommy gives me a bunch of Pedialyte really fast, and I have my tongue out to say, "Thirsty!" so I get to guzzle a bunch with my squirt bottle, too,


and the rest of the day it's drink, drink, drink, mostly in my tube. Pedialyte, then milk. Pedialyte, then milk. All day. I only spit up a tiny bit one time, and I'm feeling a lot better!

Saturday.
No puking all night, so I wake up, get some milk, get a bath, get rolled around, rolled around, rolled around, get dried off, dressed up, eyes covered up (my eyes are really sensitive to the son, just like Annabel's and Vera's), and jump in the van, get buckled in my car seat, and puke. And puke. Mommy knows better than this, that reflux puking and babies and after-feeding baths and rolling don't mix, but she forgets sometimes, so I had to remind her. I'm fine, so they bring me back inside.

Kidding!!!! We go out driving around, and while I'm sitting in wet puke, happy as can be, Mommy and Jacob look for wild violets to dig up from the ditches in the neighborhood and Daddy watches me. They never find any of the violets that the girls found JUST 4 DAYS AGO. Mommy says they have a really short season, so the ones she got in the vases from my sisters are all she gets. They find vetch and other beautiful wildflowers, instead, and Jacob finds a sweet ladybug, and brings her with him. I barf again, so back home and in the house we go, carseat and all, because now my seat cover needs to be washed. Jacob loses his ladybug between the van and the house, so he's upset, but I'm cool. I love my baths, and I get another one. And Jacob keeps kissing me to try to make me smile for the camera.

I got a package today, with 3 new flannel fitted diapers, and boy, are they loose! I got to wear them with my beautiful diaper liners.

And Hannah decided the other day that she doesn't like a shirt, and put it in a bin she likes to call Yard Sale. Making Mommy laugh. So today, I went to Yard Sale, and got myself a new dress that looks just like Hannah's shirt. :) She has no idea how good this looks on me, because she and Carley are dancin' up a storm at convention. And probably taking home all sorts of awards with their team!

Mommy wants to know if anyone can figure out what most of the "journalling" everyone does about me all week is mostly about. a) ladybugs b) solid foods that I seem to do OK "eating" through my tube c) cloth diapers and wipes d) puke and poop

If you guess the right answer, she says you can come over and help take care of me. Someone will teach you how to feed me. It's easy; all my brothers and sisters know how. You just gotta remember that puking (which we are SO gonna rename) is not a reason to stop feeding me. And no day is ever a Barley Day.

And you gotta like chicks.

Annabel not feeling well

Cathy is in the local ER getting Annabel checked because, as seems typical for ALL children, it's the weekend, and she's seeming a little sicker with her cold. This evening, the wait until Monday morning (when she could bring her to the peditrician's office) started sounding a lot further away than she was comfortable with.

Please pray that it's a quick visit and that they don't have to stay there long. Cathy hasn't gotten nearly enough sleep the past several nights.

Also please pray for: easy and painless labwork, patient nurses and doctor who are good at listening to everything Cathy needs to share, and again ... not a long stay. Unless an admission means Chona can flutter in and silently take care of everything Annabel needs, and Cathy can actually get a night of sleep! (Don't go telling her I'm praying for an admission ... I'm not!) But we both talked about sweet Chona this evening, and how she silently sneaked in and managed to do diaper changes, labwork, everything ... without me OR Mallorie waking up. So if Annabel can't go straight home, I pray for her to have Chona, or a Chona-clone!

Consider it all joy (James 1)

1 James, a bond-servant of God and of the Lord Jesus Christ,
To the twelve tribes who are dispersed abroad: Greetings.
2 Consider it all joy, my brethren, when you encounter various trials, 3 knowing that the testing of your faith produces endurance. 4 And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing. (James 1:1-4 NASV)

Even if you are reading me these verses in another Bible translation, I can only actually hear this verse in New American Standard Version, which was the Bible my youth group leader, Steve Wibberley, bought for me, and James 1 was one of the dozen or so chapters he wrote in the front cover, for me to have as guidance for my life. I wish I could talk to him these days, and to his sister, Marcia, who he suggested to "disciple" me (serve as a mentor) during those particularly difficult teen years, and who challenged me to memorize several of those scripture passages with her. I'd tell them that their work was not wasted on me. That their time invested in me protected me from quite a bit of danger, and that to this day, those verses come back to my mind, years later. And they still apply to my life today.

So I'm deciding today to consider it all joy, because we certainly are having "various" things going on. I realize I am not anywhere near perfect and complete, and definitely, I am not lacking in nothing. So I give in.

And here's the next verse: 5 But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him.

So I'm asking. And I'm going back to recement this chapter in my memory, so it can speak to my current circumstances. If any of you haven't memorized much, this is a good one to start with. If you want, I have a list!! :) Thank you Steve, Marcia.

(I was reminded of this chapter when I saw a snippet of McMama's post, which contained "counting it all joy." What a blessing I was given, to have been exposed to God's word, so that it can come back at the right moments, like this.)

Small installment

So Ida DOES do scalp IV's. Hah!


Here's the proof. I know, this is probably gory to all of you out there, but to me, all I see is a beautiful IV. I guess, to really appreciate something like this, you gotta have in your history a "fellow" (advanced training doctor in the NICU) telling you he plans to put a tube in your baby's throat, and We have to have an IV, but we don't know if we can get one. And if we don't get an IV, we're up S---'s Creek. So I don't know exactly where S---'s Creek is, but I will tell you this. If you need to tell a parent that you are a little concerned, or even very concerned, about a situation. I think there are less poetic phrases that might be used, and that would still get across your level of concern. So as a result, I tend to get all hero-worshippy when someone is willing to try for a scalp IV, because it's one of her best IV access choices. And lots of nurses don't like to even try there.


Ida's not so big on pictures.
Dr. B doesn't mind so much, herself. :)


Lori, either.

Not-Me Monday! Feb 9, 2009

OK, ready again for a conscience-clearing Monday confession session, because I'm tired of shouldering guilt or embarrassment about this crazy stuff. Not Me! Monday! was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

After losing yet another weekend to a lovely hospital stay, I did not sleep as much of today away as I could (like 4 hrs?). Because Mallorie just got discharged yesterday, and our house is in need of months of nonstop cleaning days. Instead, I sat down and wrote out a neat little to-do list and started attacking the items on the list. You believe that, right? So read on....

It wasn't I who dreamed all night of cancelling the appointment with the Early Childhood dietician today, because I just couldn't stand to delve into the topic of feeding issues one more time.

I'm also not the one who was somewhat disappointed when Lewis did come, and weighed her, and I saw her weight was the same as it has been, despite all the recent vomiting adventures. Because I surely didn't think it was a minor accidental bonus that her weight seemed to be down a lb in the hospital on Saturday. I surely don't want her losing weight! (I don't!) And I also wouldn't wonder if she would be more comfortable just a tad bit less fluffy.

About three weeks ago, when the folks at our annoying medical supply company decided in their infinite wisdom, that Mini-One extension feeding tubes are exactly the same as Mic-Key feeding tubes, after we had already learned that the much bulkier Mini-One tubes are heavier and cause bleeding at Mal's g-tube site, AND that our syringes are not compatible with the ports of the Mini's tube, I did not panic. And then when I realized that we had no more Mic-Key tubes to use, I certainly wouldn't have thought of going to Ebay to look for tubes. I've never done Ebay without the assistance (and PayPal account) of friends, because that place scares the poop out of me. So I never actually asked Carley to set up a PayPal account so I could do searches for Mic-Key tubings. Or start bidding without reading all the instructions for buying on Ebay. So when I saw a "lot" of 3 Mic-Key tubings, and enterred my first-ever bid, only to find I'd been outbid, I never, ever typed in $1700 as my maximum bid, when I had meant to type in $17.00. I didn't call and wake Tamara up, .. Oh, I mean I didn't make John call and wake Tamara up so I could freak out all over her, as if she was the one who had encouraged me to be a big girl and open my own PayPal account for Ebay! No, she never did that, and none of those other things happened over here.
So since that happened, I never did have to wait out a long day at work, unable to check on the status of that particular Ebay auction, to see what the final damage was. And Dr. B didn't tell me to "take a breath," when I told her about this while I was still awaiting the "verdict!" Take a breath!?! Up to $1700 plus shipping for 3 feeding tubes???

I also did not take a shower this time, before going into the hospital with Mallorie on Saturday, because for ONCE, it did not feel as emergent as her other ER trips had been! Something would have felt wrong about that... "Emergency" Room visit plus Mommy-gets-to-take-a-shower-first-and-get-clean-clothes-on just feel like they don't go together, except it is SO tiring to always race in there with hair standing on end and vomit all over your clothes, and baby poop.

Goodness, I didn't get nervous about people wondering why I would have poop on my clothes, so I didn't feel the need to go back and add to the previous sentence, baby poop!

And I am not feeling a little guilty, still, for never adding the extra pictures that I've promised in the past, that I'm going to put them here:

The photogenic Dr. H, who gave Mallorie her new g-button while she was hospitalized. THIS one actually taken in 2nd hospitalization in Dec, and the button was placed after Mommy accidentally popped the first one out by kneeling on her dangling tubing while picking her up. Ick! Umm, I mean it wasn't me who did that! Was someone else, altogether.


Girlfriends getting upgrades on their buttons, same day, same wonderful Dr. H.


Aww, there are too many, now that I have started, so more later on. I promise. I think.

Home Again, Home Again, Jiggety-Jog!

We're all home (well, John's at work). Mallorie's singing on the couch. Oops, never on the couch, right? I meant on the, umm, quilt on the floor.

Hannah's making some kicking salsa to go with her version of John's tacos. I smell sweet oniony smells from the kitchen, and she just showed me a couple of 2-inch serrano peppers, and asked how much I thought should go in the salsa. Uh, none?

I'm going to see if someone will watch Mallorie and make sure she gets fed on time and doesn't fall off the .... quilt-on-the-floor ... so I can maybe even grab a quick nap.

All's well with the world. My world, at least!

Thank you Dr. E. Yeah, I know. Lactulose. Whatever.

And thank you to the wonderful nurses. Gayle, Jolayne, Mary Ann, Lori, Cindy, Vicky. You made it almost feel like home, and made us feel really important, which is a great thing to feel.

Denial

I was able to live in my own happy place for the first year or so, feeding Mallorie breastmilk (almost exclusively through her tube), and singing, La-la-la-la-la when a doctor would ask about constipation or mention the nasty words, neurogenic and bowel in close proximity. I even remember that lovely Dr. O (the spina bifida doc) tellling me that "sometimes later" kids with SB will develop problems with constipation when they start on solids. Yeah, yeah, yeah. Not hearing you with my fingers in my ears over here.

Mallorie and I have had a great life in my world, where I got to feel all Mother Earth about raising her, and laugh behind the backs of nay-sayers with their grim predictions. We managed to live there more than a year, with only a couple of excursions out, when I tried, with far too much enthusiasm, to feed her whatever to me felt like healthy and natural foods. Like the day I stuffed something like 1/2 cup of steel cut oats and gobs of applesauce into her tube, all at once. I was dragged back into the real world when I tried stuff like that. (And into Dr. B's world!)

In my world, there is no constipation. So there are no medications to treat it. In my world there is no neurogenic bowel. There aren't any commercial tube-feeding formulas, either. I'd prefer there were no disposible diapers, but half the time, in my world, there are. The other half, there are cute, colorful little fitted diapers that are so stylin' and Earth-friendly, frugal, and easy on the bottom.

But breastmilk, though about the most amazing substance in the world, isn't a great iron source after about 6 months, and real people eat a variety of foods. So we work on this goal of rounding out the diet, and somewhere along the line, I get enthusiastic, and forget about balance. And when I do, I don't want to hear about Lactulose, or worse. I want to figure it out on my own, some natural method of fixing the problem. I remember Dr. B asking me once, after I got Mallorie really stopped up, "Why didn't you ask me? That's what I'm here for."

I don't know. Some part of me thinks I know best, or can figure it out on my own, if just given the chance. Without laxatives, or anything that didn't grow naturally somewhere on Earth. There are things I haven't yet fully explored. The "magic" amount of Udo's Oil to keep things going, or a great high-fiber fruit that can be given fresh and won't make her scream like the blueberries did (both times). I even just read McMama's post mentioning the protein content of peanut butter, and that nut butters can be great sources of good oils. And how about that ground flax seed and the bottle of fish oil she has pictured there? There's so much else out there to experiment putting into the ol' tube. But this time, the vicious cycle of not pooping, things (like oatmeal, again) backing up, and not being able to take in feedings ... so there's vomiting, dehydration, electrolyte disturbances ... really got out of hand.

This time I might have learned a really big lesson. I'm walking away with one word. Lactulose. It's a sugar alcohol; that seems "almost" natural, right?

And maybe another word that will make one Dr. B very pleased, if not a little bit smug. Surrender.

Guess where Mallorie decided she wants to spend the day after her birthday?

Right now, we're back in her home away from home, a local hospital. Mallorie's 4th hospitalization in less than 2 months. Mallorie's been vomiting off and on for maybe a week, and for the past 2 days, more frequently. Last night, I had to drizzle pedialyte into her mouth with a syringe every 1-2 minutes, to stop her from retching. By this morning, she had gone over 12 hrs being unable to keep more than that small amount of pedialyte down, and most of that I was pulling back out through the tube if she was vomiting.

We were both so sleep-deprived, that it took awhile to realize it might not be one of those things you manage at home. Especially when it struck me that all night and this morning, she was yawning really often in conjunction with the gagging. There were of all sorts of crazy things I thought that might be, because my mind goes everywhere if deprived of a little sleep. Shunt malfunctions, drug reactions (How many doses of Zofran cream had she had in the past 24 hrs?), some weird metabolic imbalance from the enemas/vomiting/removing stuff through her g-tube, etc? I did google yawning as sign of shunt malfunction (nothing about that, thank God), and then decided we'd better get her checked. After calling pediatric group's on-call nurse to see if there was anywhere OTHER than the hospital to get bloodwork, to check for dehydration on a weekend (no), off to the ER we went. And in not too many hours, after labwork came back showing she was a little dehydrated, she was admitted back to the pediatric unit.

This is in keeping with how Mallorie spends her birthdays. Just hours after she was born with a meningocele* that ruptured in delivery, she was flown to a children's hospital and stayed there just days shy of 2 months.

Last year, on her birthday, we drove to the same hospital for her 2nd cleft surgery, and she had complications and spent almost a month there.

Two yrs ago it was 2 months. A year ago it was one month. I'm saying ZERO months this birthday. How's that sound?? And maybe on next year's birthday, we won't even go to a hospital for a look-see, but will go to Jessica's new house, for a visit, instead!

Maybe I won't admit this part, and will save it for a Not-Me Monday post. This time it might have had something to do with me getting all crazy over trying to stop the residual diarrhea (from all the antibiotics she had been taking) with my old standby, oatmeal. Like barley, it's one of the grains that's really high in soluble fiber. You'd think I'd remember that she doesn't do great with lots of oatmeal. Or barley!

No, I'll wait till Monday.

*(The meningocele was the sac bulging from her spine that never fully closed while she was forming.)

"Here for the long haul," 2 years later!

I see Cathy beat me to it, and I gotta run to work, but this is why I am going in late today. We ate a birthday breakfast, made Mallorie gag by suggesting she take some applesauce by mouth, and enjoyed our morning with our sweet baby, our family, and our friend, Tracy.

I know you won't believe me if I say "more later," because I have yet to put up pics of the hospital stuff I promised. I guess we'll see.

Hmmm. Jacob needs a haircut. The way we typically find out he needs his nails clipped is when we realize he's with us en route to Dr. B's office (she has issues with unkempt nails). So I guess this can be how I end up realizing he needs a cut!