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.

Not Me Monday! January 19, 2009

My favorite way of letting my OCD worries fly away. Confessing what I did not do in the past week, in McMama style. So I can be free from replaying those things in my mind, and move on to bigger and better (present) things.

This past week, after it began to look like Mallorie might have developed an allergy to latex, I did NOT spend several minutes wondering how we might still be able to let her keep (and wear) her cool Old Navy socks with the rubber nonslip tread. I would never have done that simply because those were my favorite of her socks. Especially not after the suspect reactions she had were affecting her FEET! And one foot seemed to be affected because of one of these socks!
I am not still mourning the loss of Mallorie's ability to wear cool Old Navy and Baby Gap nonslip tread socks. With the tread made of rubber. "Nonslip" for a baby who cannot walk, so the only slipping or skidding she's going to do is if we manage to somehow let her fall off the couch again!!!

But I have so many of these cute socks, and in so many sizes. :(

When I heard one of Mallorie's hospital nurses telling me this cool story about how someone invented a technique for changing a colostomy dressing, I did NOT spend the next 10 minutes trying to figure out how to adapt that technique (involving use of a tampon) for containing Mallorie's profuse watery diarrhea.

I also did not almost stop her bowels up. Twice. By mixing baby barley cereal with food and putting it down her tube, because I'd read that oatmeal and barley were grains highest in soluble fiber, and hoped it would thicken the poop. Oh, but it did thicken the poop, ... to the texture of rubber bouncy balls that shot out like cannonballs with a "wash" of watery diarrhea behind them. So once she had strained and cried throughout much of one day when I'd given the barley cereal, ... I certainly didn't try the same cereal AGAIN, on another day!!

And I did not hold onto a bowl of oatmeal that came on the breakfast tray one morning in the hospital, but hid it, because I didn't want Dr. B to see it. Because oatmeal is the other high-in-soluble-fiber grain that we already KNOW has stopped Mallorie up in the past. Scary stopped up, so I woke up in a cold sweat in the nighttime, after one day when I had given her 1/2 cup of steel cut oats. I was sure she was going to need emergency surgery for a bowel obstruction. But this time, if I HAD done this hiding of the bowl of oatmeal, it would have been because she was still having profuse watery diarrhea, and would have needed the stoppage. You know?

Plus, it's so cool to be able to put real foods in that danged tube! But, I didn't do it, right? Good thing.

And I didn't make a post about chairs yesterday, instead of about what happened the previous weekend that got us into the hospital again with Mallorie, 3rd time in 2 months. Because I'm not one for procrastinating or using any other form of avoidance of painful things. I just plow straight on in, and face things, so I can move past them. But, if I DID do such a thing, you might have to be patient with me. I'm just not ready yet.

And I didn't spend all day researching my favorite bulb syringe (AKA nasal aspirator, AKA ear and nose ulcer syringe, whatever that means), to see if it is latex-free. ALL day. And most I could figure out was that it might be made of PVC. Whatever that is. Which might be latex-free.

And I must not have then realized that the one I have (and love, because it's such a great color, and better fit for older nostrils than the U.G.L.Y. red ones you get to bring home from most L&D experiences) has to be at least 14 years old. Because I think it came home from the hospital with Hannah. So even IF they are latex-free PVC now, they might have been latex rubber 14 years ago. :(

Bumbo Baby Seat, Revisited

When Mallorie was an infant, Cathy (Annabel's mom) brought by a Bumbo Seat for us to try with Mallorie, because she had 2. She said it helped position Annabel in an upright position, which therapists felt was better for her posture. What we had at the time was an infant "Papasan chair" (loved, loved, loved it, and thank you Vick and Katha), and a Tumbleform chair borrowed from ECI.



And pillows. On the couch. And we know what happened there!

We loved the Bumbo Seat, but within a couple of months, it became obvious that Mal was going to outgrow it, what with her generous bottom and fluffy thighs. Who are we kidding; she had practically outgrown it by the time Cathy brought it by, and still we kept squishing her thighs into the openings. I was so disappointed, because used with a Boppy pillow, it was a great seat for her.

Then, a mom I know told me that she had asked the company that made the Bumbo Seat to make a larger version for older children. The company has since allowed another company to do this, and even tells Jonathan's story on the website! I wanted to get the seat, but it's $199 ($149 with the "Jonathan discount") and I kept procrastinating, afraid of spending more money only to end up with a seat that Mal had outgrown by the time it arrived.

Shortly after Jonathan's mommy told me about the seat, I sent the link for the Childrite seat to several people, including Mallorie's speech therapist, and she surprised us by purchasing one of the seats for their therapy clinic, so I was able to try Mallorie out in the seat. It's got PLENTY of room for probably years of growth, and most importantly, goes up high enough on her back to give her the support she needs. We put towel rolls around her in front and sides, and she's in an upright (not reclining) position which allows her to practice holding her head erect. And even more importantly, she looks cute in it!

**(May, I wish I had a way to get one for Vera and send it to Singapore! I feel like Vera is going to be sitting up so soon, but this would be a nice upright seat, in the meantime.)

Late Update

Sorry, we've just been so busy, and haven't updated. Mallorie has been recovering really well from her RSV adventure. Except that she still "oinks" (her dad's term) every few days for a little while, you'd almost not know she was sick. The oinking is the funny noise she makes when her nasal passages get swollen and she still insists on breathing through them instead of her mouth.

She also has been taking a solid feeding in her tube once a day, meaning a mixture of Gerber turkey-rice-veggies, fruit, baby cereal, some Udo's oil, and milk. Oh, and egg yolk, which apparently doesn't cause the violent retching/vomiting that whole egg did in the past. Matthew has been mixing up her mixtures every day, and spends time creating plans and calculating calories she'll be getting each day, using this book.

I also recently found a support group (a yahoo group) where I've learned so much mostly by quietly reading the emails among members, and even been able to connect with a couple parents who have given me encouragement and advice. One of the things that I found most comforting was reading emails where other parents talked about how hard it is to just make the change, to start adding solids to their children's diets. It was wonderful just to know I wasn't alone in having trouble with the transition. Some days, anything extra - like making a change in routine - just feels like too much.

And I also learned from this group that the Mic-Key button instruction pamphlet actually mentions giving blenderized foods through the button! (I checked to make sure, and sure enough, it was there.) So much for the warnings we were given to never, ever put real foods through the tube. I'm pretty sure I read something about blenderized food in the Mini-One paperwork, too. The professionals will catch up with what families are apparently already doing, some day. (I still chuckle when I put Mic-Key and Mini-One in the same paragraph.)

Mallorie's speech therapist, has also been working overtime, helping us create/adapt toys that encourage Mal to use her arms and get her reaching and involved in active play, as opposed to just passively watching things go on around her. I want to get Becca's permission before showing pictures of the latest thing she made (which is another way of stalling, because I need to get to bed, not try to figure out how to download pictures from the camera, tonight).

Oh, and I have to post soon about the neat chair a mom I know told me about. Later.

Cool new "tool"

I promised to tell about the cool new bottle we got in the recovery room after Mallorie's surgery. It's put out by a company called Zip-N-Squeeze, and is called a Soft Sipp bottle. It is AMAZING.

Of course, it was created by a nurse. :)

It has a one-way valve, so you can control the rate in which you give liquids, and has a really, really soft and flexible tubing that doesn't even hurt the mouth to use after surgery. I wish we had known about this bottle sooner.

Mallorie had been unexpectedly hospitalized for almost a month in February, after she had a mouth surgery. Although she had not been fabulous about taking bottles before then, she got so she would not even take the occasional bottle, ever. She had developed some gagging and vomiting issues, partly due (I think) to some formulas we had been trying, and I think partly also because of the time she spent with a tube in her throat while she was on the vent. She eventually became upset about anything being in or near her mouth, including a bottle nipple, and would gag and vomit in response. She would only take sips of water or Pedialyte drizzled into her mouth by syringe.

Except for that bottle she took on Saturday, it had been several months, I think, since any of us have been successful in getting her to even take a sip except by syringe, so we carry syringes everywhere. The problem with syringes is that they are either so small that you are refilling them every few minutes ... a 10cc syringe is just 2 teaspoons ... or you look goofy squirting a 60cc (2 oz) syringe in your kid's mouth in public. It looks like a horse syringe!

But with this new squirt bottle, you can feed liquids in a controlled fashion, and because the tubing is so thin and soft, even Mallorie, with the oral aversion she'd developed, took to it easily. And no sucking is required, so it's great for kids who haven't developed a good suck, but who still can manage to swallow liquids without aspirating. It holds 3 oz (about 90 cc).

Of course, if she ever decides she likes her regular bottles again, we may outgrow our need for her ZNS bottle!