Thursday, February 20, 2014

Three Thing Thursday

Thing the First: I remember how important the release of the Times bestseller's list to authors and publishers, and I am AMAZED at Hands-Free Mama's self control. What a great reminder to choose what really matters, all the time - not just when it's convenient.

Thing the Second: J$ has an umbrella policy - quick, sue him! (Just kidding!) Peanut and I looked into this but ultimately decided that properly insuring our individual cars and house protected us enough. We may revisit this sometime in the future, but for now, we felt the umbrella policy plays on unrealistic fears and that if something catastrophic were to happen, something like selling our house is not actually the end of the world.

Thing the Third: There was a very interesting article in The Atlantic about how to save marriage in America. What I found most interesting was the description of marriage's trajectory over the past couple generations, and how neatly Peanut and I fit into the third category. As much as we like to think we are individuals, we often do

Tuesday, February 18, 2014

Optimism vs. Pessimism

Last week, The Simple Dollar posted about optimism and pessimism, and it got me thinking.

First, I'm thinking I need to read the book that inspired the post.

But second, I realized that my entire outlook on life has changed in the last 18 months.

I used to be a pessimist - or as I called it, a realist. I wasn't just "glass half empty", I was "and the water's probably polluted anyway". I was frequently frustrated with things in my life that "kept happening to me". I was irritated with all the people in my way on the subway or sidewalk. I felt put upon, even though I had overscheduled myself. I found most of my obligations to be burdens.

And then Baby M was born.

The circumstances surrounding her birth were catastrophic. You could easily say that this is the worst thing that has ever happened to me, and in fact, one of the worst things that has ever happened to anyone I know. And yet from the moment she was born, I was optimistic. It wasn't a choice - it just was.

I think it was probably a coping mechanism to start. During her first week when her survival was most in question, I had to believe that she would be okay. I had to get my milk to come in for when - not in case - she needed it. I had to learn to take care of myself post-surgery so that my family could go home and I could handle grocery shopping and driving. These things were not burdens. They were goals.

As we dragged on for months and months in the hospital, I was optimistic. She had avoided the more dangerous complications that face preemies (brain bleeds, necrotizing enterocolitis, surgery) and I was confident that she would ultimately be okay, which meant that the roadblocks at the time (oxygen needs and eating problems) would be temporary. And we can handle anything for a short time.

During her first months home, when her feeding troubles were at their worst, I started to slide into pessimism, and things felt very dark. It felt like I had been promoted to a job that I wasn't qualified for, didn't want, and couldn't quit. Scheduling surgery for her feeding tube allowed me to feel optimistic again - and from that moment, my life has gotten better than it ever was before.

I realized that if things aren't working, you have to change them, even if your choices are between bad and worse. A complicated birth and a child with disabilities happened to me. But what that looks like from here on out is up to me - and I choose optimism. I choose to be happy with our lot, and being happy makes things easier. And that leads to the opposite of a vicious cycle - a cycle in which things get easier and easier and happier and happier, all because of a decision to stop letting bad things be permanent, personal, and pervasive. 

I don't get grumpy waking up in the middle of the night or early in the morning. I chose this - I wanted a baby so badly, and I fought to stay pregnant, and she fought to stay alive. Every moment rocking her is a victory. Every chance to kiss away an owie and every giggle is better than a gold medal. I get one chance to be with this baby in her early years - one chance. I cannot waste a single second being pessimistic about our lives.

Thursday, February 13, 2014

Three Thing Thursday

Thing the First: I LOVE this article about how to Save Your Relationships. But more than the admonition to ask questions that matter, I love the description of the stay-at-home mom's day. It's so perfect - each day I am my best self and my worst self. Each day I marvel that I accomplished something I never thought I could do and I condemn myself for failing something that I know I can do better. Halfway through naptime I miss my baby, even though during the half-hour leading up to it I resented her every squawk. Don't even talk to me about bedtime - I'm in there checking on her every hour until I go to sleep, because I miss the weight of her in my arms and the smell of her hair under my nose. Each night I look around and wonder what on earth I accomplished, and each night I fall asleep certain that this was the most productive day of my life. These moments are truly the longest shortest time of my life, and I am so thankful to have the opportunity to experience them.

Thing the Second: J$ talks about "the stuff you love mentality" - the idea of only spending money on things you love.

Thing the Third: More love, this time for the concept of being "self full" instead of "selfish", from A Practical Wedding.

Wednesday, February 12, 2014

Financial Implications of a Feeding Tube




Since this is still ostensibly a personal finance blog, I figured I'd go into the financial details of having a feeding tube. There are more than you might think!

The equipment
Obviously, there's the equipment. We need the following:

  • the tube itself (we have a Mic-Key button)
  • extension sets, which attach to the button and to the feeding apparatus
  • a pump
  • feeding bags
  • syringes 
  • clog-zapper
  • gauze
  • tape
All but the last two items are provided by our home medical equipment company and covered by our insurance. We don't need much gauze or tape, so that's a negligible expense. 

The syringes that are covered are not the best , so I've spent money out of pocket on syringes. There's a certain kind of syringe that lasts for a really long time and is easy to push, but it's been discontinued so finding them is difficult and pricey. I found it to be worth the trouble of buying several, and hopefully they will last until they are manufactured again or until we don't have a tube any longer. 

The food
There are actually options about what to feed a tubie, but I didn't hear that from any of our doctors. They just gave me a calorie goal and told me what formula to use and that was that (she did get the breastmilk that I had pumped, but that's used up now). Our health insurance does not cover the cost of formula for tube-fed people, except with two rare diagnoses, which Baby M does not have. And the formula we were using was the most broken-down, easy to digest, and expensive formula available: $45 per can! We went through a can every two days, so it was very expensive. (And frustrating to watch as she threw up half of it every day.)

Luckily, WIC picked up the cost of the formula through Baby M's state health benefits (she is considered disabled), but that wouldn't have lasted forever. And $700 of formula per month was not in our budget. 

But I discovered another option, called a "blenderized diet". Medical situation allowing, many tubies simply eat real food, blended to a smooth puree and plunged in with a syringe (it's too thick for the pump - see my willingness to pay for good syringes?!). Working with our nutritionist and pediatrician, we have transitioned Baby M to a blenderized diet and it's been AWESOME. 

Her diet right now is based on jarred baby food as we get her body used to digesting and test her for allergies, just as you would with an orally fed baby. We use two jars of baby food veggies, 1-2 jars of baby food fruit, baby food cereal, 1 jar of baby food meat, and milk and oil for added fat, protein, and calories. This is an expensive version of the blended diet - as any mom knows, baby food is kind of expensive for what you get, but it's easy to digest, unlikely to contain allergens, and smooth enough to go through the feeding tube.

As Baby M's body gets more used to a real foods diet, we will slowly transition to all table foods. For this purpose, we got a super fancy blender - a Vitamix, which sells new for almost $500. !!!!! It's an amazing appliance (you can make hot soup in it from cold ingredients!) but I don't know that I'd pay $500 for one. Luckily, Vitamix (and Blendtec) offer discounts on refurbished machines to tube-feeding families - our doctor sent a letter of medical need and we got a machine in perfect working order with a 7-year warranty for just $150. We've used it at least once a day since we got it, too, so we're going to get our money's worth.

If you think about it, I am making some "bad" personal finance decisions with this blenderized diet switch.

Consider:
Formula - 100% covered
Feeding pump - 100% covered
Bags and extension sets - 100% covered

Baby food - not covered
Real food - not covered
Syringes - not covered
Blender - not covered

BUT. If my kid ate orally, no one would be subsidizing that, so I'm just getting things closer to normal!

I've been stocking up on baby food when it goes on sale, for around 12 cents per ounce. This makes each day's feeding around $2.10, not including the milk or oil. When it's not on sale, it's around 17 cents per ounce, still only around $3.00 plus milk and oil.

When we switch to table food it will be even cheaper. Consider, how much does the following cost?
slice of bread
half a green pepper
handful of baby carrots
handful of frozen berries
banana
hard boiled egg
cup of milk
tablespoon of oil

Probably not even two bucks!

And no matter what, it's cheaper than $700 a month of formula. Even with the additional costs, I think that this diet will be a huge help to Baby M's health in the long run. Also, I'm learning a lot about nutrition as I do it, so our family diet overall will improve, and we'll still have a fancy blender at the very end of it!

Monday, February 10, 2014

"Distressed babies" and AOL

The CEO of AOL is making headlines for a terrifically stupid decision - well, two stupid decisions.

The company decided to change the way they handle their contributions to employees' retirement plans - rather than depositing the match at each paycheck, they will do it as a lump sum payment at the end of each year. Presumably this will save them money because it would punish employees who leave before the year is up, as the company won't have to pay their match. Perhaps there are fees per transaction or something that they are also saving on.

Okay, well, I think this is kind of a dumb policy myself, or at least one that is not advantageous to the employee or prospective employee. But then the CEO went and blamed the decision on "distressed babies" - specifically, two infants who required more than one million dollars in medical care each.

Um, EXCUSE ME.

First of all, that is a huge breach of privacy for those two families. Like, violating HIPAA privacy laws and being rude and insensitive beyond that. The mother of one of those infants responded beautifully here.

Secondly, the baby didn't ask for that kind of medical treatment. The parents might not have either - while there are sometimes decisions to be made regarding whether to resuscitate at birth, depending on the gestational age of the infant there might be a hospital policy or even a state law that all measures must be taken to keep the baby alive.

Regardless, medical treatment in general is not something that people "take advantage of" - you get it when you need it. The health care system in our country is very broken, but the idea is that insurance itself is designed so that everyone pays in and those who need care get it, subsidized by those who don't. AOL is likely self-insured instead of paying premiums to an insurance company the way we usually think of it working, and it sounds like they didn't take enough risk into account. If they have 3,000 employees plus spouses and dependents, it seems reasonable to think that more than two of their plan participants might have a catastrophic medical event in a given year - premature birth is expensive, yes, but so is cancer, heart attack, or a major car accident, all of which are more common. This was a case of a giant company not calculating risk effectively, and laying the blame on the backs of two-pound infants and the burden on their parents' retirement. For shame.

(Since I originally wrote this post, the CEO has apologized and re-instated the 401(k) matching policy. Good for him, but as Deanna Fei wrote, the damage to her family is already done. The Consumerist covered this story here.)


Sunday, February 9, 2014

Feeding Tube Awareness Week



It's Feeding Tube Awareness Week - I guess if you're reading this blog, you're already aware that I have a tube-fed child, and you've been learning alongside me as I figure out what that means for us. But here's a quick refresher in case you're new:

Baby M was born at 25 weeks gestation, and spent 4.5 months in the NICU before coming home. She had a temporary feeding tube while in the NICU, until she could suck, swallow, and breathe well enough to eat enough to gain weight. She was not able to eat enough to continue to gain weight, though, so after a few months of losing weight and being diagnosed Failure to Thrive, she had another temporary feeding tube placed and eventually a permanent one. It was not an easy decision, but it was the very best one we could have made in our case, and my only regret is that we didn't do it sooner.

There are a ton of reasons why people get feeding tubes. Here's a short list (bolded items affected Baby M at one point or another):
  • Extreme prematurity (the suck reflex does not develop until around 34 weeks)
  • Gastroparesis (delayed stomach emptying)
  • GERD, which can cause oral aversion in infants
  • Birth defects affecting the mouth, esophagus or stomach
  • Lung or heart problems (eating is a very difficult task, and it may take more calories to eat than the person can take in by eating)
  • Advanced dementia
  • Severe eating disorders
  • Diseases such as eosinophilic esophagitis (inflammatory disease of the esophagus) or mitochondrial disease
  • Difficulty swallowing, due to
    • mouth, throat, or lung cancer
    • dysphagia, a swallowing disorder
    • paralyzed vocal chord
    • aspiration risk (breathing in what should instead be swallowed - can lead to pneumonia)
The most common question I am asked is how long she will need the feeding tube, and the answer is simply "as long as she needs it". When the tube was placed, her oral aversion was so severe that she had to learn to be comfortable with food just being near her face or on her lips. Now we are teaching her to chew and swallow safely, what food is for and how great it can be. Eventually, we will have to teach her what hunger feels like and how food can help that. 

It's hard to think of a person losing the instinctive ability to sustain themselves, but that's what had happened - food was so painful and scary to her that it was preferable to starve than to eat. Knowing the hurdles we would face in teaching her to eat was actually my biggest stumbling block to accepting that we needed a feeding tube. But it hasn't been as bad as I feared. We have a strict "no pressure" policy - she is offered food  to eat by mouth whenever she is fed by tube and if she tries it, that's great, and if not, that's okay too. We eat in front of her and let her taste whatever she's interested in. She controls everything that goes in her mouth, sort of like baby-led weaning. We don't make a big deal of vomiting (it happens a lot). We work with speech and occupational therapists in our home and in a feeding clinic. And she's made some really good progress - her oral aversion is almost gone, she willingly tastes almost everything she is offered, she drinks water out of a sippy cup, she has learned to take bites of foods and spit them out. Doesn't sound like much, but I literally could not have pictured this six months ago. 

Once she is able to actually eat by mouth, she will still have to pass a set of criteria before the tube comes out:
  • Taking all calories by mouth for six months
  • Taking adequate hydration by mouth for six months
  • Taking all meds by mouth for six months
  • "Hopefully" experiencing a bout of illness during that six months (it feels wrong to hope for an illness but kids get weird about food when they're sick, so it's important that we know she doesn't need the tube while ill)
So we are a ways off - I expect to have the tube for the next year or two, and that's totally fine. When she doesn't need it, she'll let us know, but until then it has saved her life and my sanity. Here are some other great things about it: 
  • Obviously, nourishing my child without hurting her
  • Ever tried to give nasty-tasting medicine to a baby? It's easy for me to do!
  • I can keep her hydrated when she's sick without having to go to the ER. 
  • I can "vent" her stomach if she's gassy or needs to throw up. 
  • She has two belly buttons!

Friday, February 7, 2014

Best Baby Toys

As with all babies, Baby M has a magical ability to conjure toys out of thin air and multiply them throughout our house. She also managed to charm all of her relatives into giving her noisy, battery-powered things that are easy to trip over in the night.

I think the only toys we have actually bought her have been books and blocks, and those we bought used. But her favorite things to play with have cost me nothing at all, and it might be weird but this is what I want to give all my pregnant friends at their baby showers.*

* Hot chocolate tin or coffee can with a strip cut out of the lid. Include metal juice can lids or large wooden popsicle sticks for insertion into the can. Bonus: the can can be shaken or rolled around for interesting affect.
* Milk cartons and duct tape. Take an old single-serve milk carton (like from school), fill it with beans or other small noisy things and tape it up good and tight. You can use the fun duct tape now available to pretty it up. Baby will shake this for hours on end.
* Small plastic juice or pop bottle. Same as above, but fill with interesting things to look at. Colored beans, bits of sparkly paper, sequins. Tape the top on for safety. You can also fill halfway or so with water, which makes it go in unexpected directions when rolled.
* Old remote controls or cell phones, or broken video game controllers.

I bet you have this stuff just lying around your house! Don't buy plastic crap; give the gift of recyclables to the babies in your life.


* You think I'm joking, but I'm trying to figure out whether my sister-in-law would think I'm a total cheapskate if I made these things for her. I *know* that her baby will like these way better than any commercial product, but I can only imagine the look on her face at the shower: "Oh, thanks, you brought me your trash." :)

Monday, February 3, 2014

Urgh, cat vet bills purgatory

Need your thoughts on something, readers!

There are certain bills I just hate to pay every month. Some of them are things I'm just grumpy about paying for, but at least one of them is a situation where I'm not sure if I'm being ripped off, so seeing the charge every month makes me wonder. Help me think this through.

I signed up for the pet wellness plan through our local big box vet shortly after we adopted our kitty. I didn't do it on a whim; I took the literature home and read through it all carefully and decided that it seemed like a pretty good deal. And then he got a weird skin infection, and we signed up. We got free office visits and discounts on the treatments, along with regular two check-ups and one dental cleaning per year. I was happy with it for the first year, but since then it's worn at me every month - is this a good deal? If it is, okay, I shouldn't mind paying the fees, but if it's not I'm getting ripped off and I want to do something about it.

I have compared the prices to an independent veterinarian near us, and on the whole, we are paying comparative costs IF we do two annual checkups, and we're getting quite a good deal if we have any unplanned office visits.

Pros
* Monthly fees are not prohibitive ($26.95)
* Unlimited free office visits
* Discounts on medications, treatments, etc.
* Two check-ups with vaccines
* One dental cleaning per year

Cons
* Do we really need unlimited office visits?
* Do we really need two check-ups per year?
* Do we really need a dental cleaning every year?
* At both dental cleanings he's had, they have called asking for $1,200 worth of dental work that he "seriously needs" (they indicate that he is in pain even if he never shows signs of it) and he's under anesthesia so they need an immediate decision. As our circumstances over the last 18 months have been extraordinary and there is not $1,200 in the budget for MY dental work, it's not happening for the cat, but these calls were extremely stressful for me.

Other considerations
* Our cat is strictly indoor only and never comes into contact with other animals. He's almost eight years old, so is considered a senior cat. He's already neutered, up to date on vaccines, etc.
* Aside from his weird skin thing (which he probably had when we adopted him), he's had no medical issues at all.
* My cats when I was a kid were indoor/outdoor, and they went to the vet maybe once a year. More like every two or three years. They never got their teeth cleaned. They lived happy, healthy lives and died of old age. I wonder now if this was responsible pet parenting, since I've seen recommendations in many places that cats get seen twice a year. (We had an epileptic dog, too, so I know that my parents were proactive about our pets' health, but our cats certainly didn't go to the vet twice a year.)
* Canceling this policy is apparently difficult (something I did not research before signing up) and I do like the individuals at the big box vet. But I would be taking my business elsewhere because the prices at the big box vet are much higher if you aren't on their plan. I like the other vet too (we go there for nail trims) and it has the bonus of being a locally-owned shop.
* I feel like with my luck, the cat will immediately start having weird health problems and require lots of office visits as soon as I cancel this plan.
* Canceling this plan will save $323 per year, less whatever actual vet costs we incur. So we are not looking at a ton of money, but not a negligible amount either.

Okay, so questions for you:
How often do you take your pets to the vet?
Do you do extras like teeth cleaning?
Do you have a pet wellness plan?
What would you do if you were me?

Really, I just want to make a decision one way or another. If it's a valid way to save some money, I should be okay with paying the monthly fee. It's just the wondering that's bothering me!