Saturday, February 25, 2012

Changes again

It never stops, does it?

I'm making plans to go back to work by the end of March, likely 3 days a week. Acorn has been going to daycare 2 days a week for the last few weeks, and will be going 4 days a week starting this week. That extra day I'm home will be for Leaf's big appointments, and for getting other things done.

Our insurance issues appear to be resolved, which is a huge load off my shoulders, because it means some of Leaf's therapy needs will be covered, and we'll get our extra nursing hours back that we lost when we thought our insurance was toast.

We've already fired a nurse for gross incompetence. At least I no longer feel I have to try to work things out with people who just aren't going to work out. But largely, we've sort of fallen right back into the same pattern we've had for the last several years

I'm not sure how this will all play out, but I really feel like I need to get back into a regular group practice. I feel like I need to do a lot of things, and there's just not time for any of them, so we'll just have to figure it out.

Monday, February 13, 2012

Now that we've been home a few days...

In the rush to schedule posts and keep them a bit spread out, I neglected to post a link to the news story we were interviewed for about Feeding Tube Awareness Week in yesterday's Detroit Free Press. I really like the article, and they got some great photos.

Leaf was released from the hospital last Wednesday. It's been a whirl-wind, and not much has gotten done, beyond orienting new (and old) nurses to Leaf and her quirks, getting our heads around her schedule, dealing with the jealousy common to 3 year old big brothers (especially when his favorite nurse has to put his sister first), and generally snuggling my kiddos.

We've had no nurse from 7 am Saturday through 11 pm Sunday. And it's been good in many ways, more relaxed, more a matter of us finding our way than of trying to balance our desires, the expectations of various nurses, and so on and so forth. Less interference.

But less sleep.

There are some issues with our insurance, so this week, if they're not resolved, I'll probably be talking with my employer about going back to work earlier than planned. My original argument for taking leave was that Leaf was not childcare friendly - not with oxygen and a feeding tube. Child care is now a moot point, with nursing on board. Acorn is already back in daycare 2 days a week for everyone's sanity, including his own. I'm not sure any of that is what I had in mind, but it is what it is.
But this break from work has been good for me in other ways. I've been writing. I've published a mini course, I'm part way through an energy work kit, I'm going to get my etsy shop back online, and there's a few more things in the works too.

Sunday, February 12, 2012

I Quit

...well, not quite yet, but I am quitting. Breastpumping, that is. I have been pumping for 261 days. I am taking meds to keep my supply where it is, and that's not enough to feed Leaf every day. I'm running out of meds, and it's taking progressively more to maintain that level of production. In that time, Leaf has breastfed maybe two dozen times. Most of them not terribly successfully. That's what happens with respiratory kids. I'm exhausted. I'm down to pumping 3-4 times a day, because there's just too much to be done. As it is, 2 of those sessions are when I get up and when I go to bed, and that's a whole extra hour of sleep I could get. I have exactly 6 1/2 ounces of my own milk in the freezer, and about 100 ounces of donated milk; My guess is that will last me less than two weeks at my current rate of pumping. While there's some hope of finding more donor milk, I have not yet found a reliable long-term donor, or even more than the one lump-sum donor. (This, by the way, is why I dislike most lactivists. I'd love to keep giving Leaf breastmilk, but I can't get enough. We couldn't get *any* for Acorn. But "get donor milk" which is the first suggestion after "pump and take meds" is just not that simple. It's only a viable solution if there's breastmilk to be had, and I see a lot of lactivists who are pretty adamant that anyone can get donor milk if they really try.) I'd rather save breastmilk for oral feedings and for resuming her g-tube feedings, and put formula in the continuous feed she's getting into her intestines right now. The formula will work better for a continuous drip, and the breastmilk will be better for her tummy as a starting point when we're working on feedings into her stomach. It's bittersweet, but I know I have done every possible thing in my power to provide milk for Leaf. I felt horrible when when I stopped pumping for Acorn, but I was pumping all day for a total of 2-3 ounces; we'd never really had a chance. It's a little different knowing that I'm providing half of her daily nutrition right now and I'm stopping anyway, but this has been so amazingly good for her - she's grown right up the curve and into the normal range for adjusted age, based on my milk alone, and that's an amazingly good feeling. Like the t-shirt says, I grow people. What's your super power? We're at 6 months adjusted age in just a couple of weeks. I won't feel bad at all about starting to work towards a blenderized diet for her g-tube at this point, and really, I think that would work better for the digestive issues we've seen anyway. I can blend up foods like spinach to try to get us out of supplementing her iron, for example, and bananas to make it so we don't have to give potassium. On the plus side, my old bras ought to fit again in a few weeks (I hope - I went from a 40D to 38I). And I can sell my hospital grade pump for about what I paid for it....which might pay for my blenderized diet grade blender...

Saturday, February 11, 2012

Feeding Tube Awareness Ideas

Today's Topic: Show us your awareness video / Share your awareness idea. No videos here - we're busy trying to get Leaf out of the hospital and home. I do think, though, that there are plenty of reality TV shows out there, and surely someone with a feeding tube can get on one of them and show off their tube for us all. Or maybe some cartoon?

Friday, February 10, 2012

Feeding Tubes: What do Doctors Need to Know

Today's topic: What do you want clinicians to know about the day-to-day life with a feeding tube? Two things: 1. Surgeons who put feeding tubes in believe that the only problem with them is leakage. Of course, that's the only problem you'd see your surgeon about, because they're the guys who measure to figure out what size button you need, and if it's not leaking, you don't need a new one. The other problems are all manged by other disciplines. 2. Doctors don't often get the amount of work that is required with tube feedings and attempts at oral feeds. They don't get the effort that is required to eventually transition most kids from tube feedings to oral feedings. They don't get the time required to get from continuous to bolus. They don't believe when parents tell them it's not going the way they were told it would go. They don't have a problem with prescribing continuous feeds, because they don't ever do the work of keeping the pump running.

Thursday, February 9, 2012

Feeding Tubes & Medical Professionals

Today's topic: The need for greater awareness in the medical community - Explain a situation where a clinician didn't understand tube feeding and what was the impact. Oh my. I could tell you stories, but the situation we saw over and over amongst medical professionals was shock and amazement that Acorn ate anything orally, because he had a feeding tube. It's not like the tube blocks his mouth or esophagus or the exit from his stomach. It's not like it's all or nothing. The other big issue we've seen with Leaf is in regards to breastmilk - clearly, if she's not eating orally, she must be getting formula, right? (to be fair, there's a post coming soon about the end of pumping, but seriously, there's no reason a mom can't pump milk and feed it through that tube, you know?) The other problem with breastmilk and tube feedings is that breastmilk loses calories when fed continuously - the milk fat sticks to the tubing walls, and the child never gets that fat, to the tune of somewhere between 10% and 50% of the available calories. We've had to explain this to multiple doctors, and explain it to nurses, because it means you have to set things up certain ways to get it to work properly with a feeding pump. Then again, we've had nurses ask about feeding Acorn through his trach, so maybe it shouldn't surprise me.

Wednesday, February 8, 2012

Tube Feeding Attitudes

Today's topic: How has your attitude/family/friends' attitudes changed towards tube feeding? What has awareness of the positive benefits done to change perceptions? I'm not sure that many of our friends or family have changed their minds. A few see it as a necessary evil, a few think it's too scary to think about, and a few just hope that ignoring it will make it go away. It's kind of hard to argue with results though, and Acorn is proof that tube feeding can work wonders - he was below 3% for size when he was born, and he's now around 40% for actual age, and above 50% for adjusted age.

Tuesday, February 7, 2012

Life With a Feeding Tube

Today's topic: Understanding Life with a Feeding Tube - Explaining a day in the life/daily routine of tube feeding and all it requires I think the hardest thing with Acorn was the puking. For a long time, he puked 5 or 6 times a day, every day. We could not go to a restaurant without him puking. If he picked something up and put it in his mouth he might puke. If he was mad he puked. If he was hurt he puked. If he was scared he puked. With Leaf, the thing to understand is that she is being fed continuously. 24 hours a day, she is hooked to a little pump, with a bag of milk or formula to feed into it. We carry it everywhere she goes, just like we now carry her ventilator and oxygen - everywhere - it's yet another tether. When the pump is empty, it alarms. If a tube gets crimped, it alarms. If it thinks it's done, which clearly it can't be since we're running 24 hours a day, it alarms. It alarms no matter what time of day it is because she has to keep being fed or she doesn't get enough calories and fluids to be healthy. We have a cute little backpack to carry the bag and pump in (actually, two different styles of tiny cute backpacks), but it's still there, in plain sight, everywhere we go. In either case, having a tubie means planning ahead. Depending on whether or not they take anything orally, you can't stop at a convenience store for milk, and you often can't stop at a grocery store for formula. You can't just run through the drive through and hand their share of dinner back to them in the back seat. When using a feeding pump, it also means being concerned about electricity. Most pumps will run 24 hours on a charge, but you keep it charging at home so you can go out. If the power is out very long, you can have a non-functional feeding pump, and that's not good either.

Monday, February 6, 2012

Why a Feeding Tube

Today's topic: Why my child has the tube they have now Both Acorn and Leaf had feeding tubes as tiny preemies because they were too young to coordinate suck-swallow-breathe the way full term babies do. Acorn kept his tube due to oral aversions - anything near his mouth made him vomit. He was almost completely orally fed at one point, but developed those aversions as part being a preemie. He was intubated for 8 weeks, and had a feeding tube in his mouth after that until he got his trach because he needed the space in his nose for the CPAP and the nasal cannula. He also missed the suck-swallow-breathe window after his trach was put in. It took us until he was 2 1/2 to get him to eat enough orally to sustain and grow, and even now, we supplement with a limited amount of special high calorie formula to make up calories and nutrition he's not getting on his own. Leaf has a feeding tube because her respiratory status was so marginal when she came home that she could not coordinate suck-swallow-breathe - she was breathing at 60 breaths a minute, and a child cannot drink that fast. She *was* partially orally fed before this hospitalization. She's now being fed through a "J" tube, which goes into her jejunum, the upper part of the intestine just below the stomach. This is because she was extra pukey because of a combination of meds that slowed her digestive system, meds that made her nauseated, existing reflux, and the risk of aspiration while she was very sick. Plus she was just a pukey kid to begin with. We are hopeful that we'll be able to work our way back to something resembling a normal feeding schedule soon, with more typical feeds going straight into her stomach, but it will take time.

Sunday, February 5, 2012

Feeding Tube Awareness Week

This week I'm hoping to post every day on topics for the second annual Feeding Tube Awareness Week. You can learn more from the Feeding Tube Awareness Foundation.

Today's topics: Why awareness is important to my family - What would be different for me/my child if tube feeding was better understood?

Awareness is important to us because we're on tubie #2 here. Because feeding tubes are "normal" at our house. Because some kids - my kids - would (would have) starve themselves, because they're unable to successfully eat orally.

Awareness would mean fewer stupid comments from doctors (who should know better). It'd mean fewer parents giving us dirty looks because their kid asks about our tubes. It'd mean fewer people staring at us when we're out with Leaf - in her 5 days at home her feeding pump often went wherever we did, and that caused a lot of consternation for some people.

Even post-feeding tube, Acorn gets a lot of funny looks. "Every kid" eats candy, right? What do we mean he doesn't eat cookies? Yes, he's 3 1/2 and still drinks milk from a least he drinks.

So, in short, it'd mean a lot less hassle in our lives.

Friday, February 3, 2012

Updates and such

The house is a disaster,  but there are clean diapers and clean clothes, and Leaf's bedroom just needs another half hour or so of work.

It's been a crazy few weeks here, but we're winding down our hospital stay, and theoretically planning to bring Leaf home again on Wednesday. Wish us luck. I got our nursing schedule for the month today, and it looks like we'll do ok, if I can stand the new nurses (and some of Acorn's old ones).

I've also started paperwork to have Acorn evaluated for the public school's preschool. I'm torn on this, but we're going to see how it goes. He's been signing more and trying to say more words, and actively asking for signs for some things, which is very exciting....but totally against the school's preferences, since they don't like sign language.

On the crazy business and writing front (ie, keeping my sanity, one keystroke at a time):

I launched my first e-course on planning for Pagan holidays - and it's free, so go check it out!

I've also started Goddess Leonie's Become a Business Goddess course, so watch for more exciting things to stop living in my head and escape out into the real world.

Pagan Parenting in the NICU is available as an ebook on - I'm working on edits to get it listed on Amazon too!

I have a submission in for an anthology of Pagan birth stories, and I'm working on another for an anthology about Pagans with disabilities.

And, as I mentioned on Wednesday, we're planning a birthday bash here at Our Little Acorn, so if you want to be involved, let me know

Wednesday, February 1, 2012

A Spring Birthday GIveaway...

My two miracle babies are just 3 weeks short of being 3 years apart - both Geminis.  I'm planning a big birthday bash here on the blog for those 3 weeks this spring, May 25 through June 13.

I'm hoping for some guest posts on births and birthdays, and planning some give aways of my own (though if you have something for me to give away, that'd be awesome too - preferably in line with my blog's themes, so things that are Pagan, parenting related, for kids, or special needs related). I'm planning some birthday recipes and maybe a few reviews too.

Want in? Email me at janet at lakotacreations dot com, and put "birthday bash"  in the subject line.