Saturday, February 21, 2009

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!

Tuesday, February 17, 2009

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.)

Tuesday, February 10, 2009

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.

Monday, February 9, 2009

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.

Sunday, February 8, 2009

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.


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.

Saturday, February 7, 2009

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.)

Friday, February 6, 2009

"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!

Thursday, February 5, 2009

Happy Birthday to Me...

Ok, this is Cathy, Annabel's mommy. Connie is very busy and trying to get caught up from Mallorie being in the hospital so long. I am taking a big risk that she will be upset with me for sneaking on her blog. But I wanted all Mallorie's friend to know that tomorrow is a HUGE day for this special angel. Guess who is turning 2, yes Mallorie here goes...
Happy Birthday to you,
Happy Birthday to you,
Happy Birthday to Mallorie,
Happy Birthday to you!!!!!!!!!!!
P.S. I hope your volume was way down, ha!