Sunday, December 20, 2015

Where's the bucket full of popcorn and half gallon of soda?

It should come as no surprise to anyone that knows me to read that I like movies. I have literally hundreds of movies on DVD and blu-ray. And then I rewatch some of them because they're my favorites.

Every October, I watch scary or suspenseful movies. The last couple years were devoted to Hitchcock because those aren't as traumatizing to small children who might wander in. Some years, though, I do a theme of ghost (Session 9, The Changeling, The Others, Poltergeist, etc) or gore (Evil Dead, Cabin in the Woods, 28 Days Later, etc). Sometimes it's suspense like Panic Room or Red Eye. Anything that gets the adrenaline pumping is awesome.

There's not a ton of Thanksgiving movies, but I do try to watch Planes, Trains, and Automobiles every couple of years. John Candy and Steve Martin road tripping against their will is always going to be funny. For a while, our family watched Flash Gordon every year and that. is. terrible. As Dad would say, it's so bad it's good. It's camp.

Jaws, of course, is great for the 4th of July. Or really anytime of year. It's Jaws. What's not to love? Though if Jaws isn't your speed, there's obviously Independence Day because if you don't like blowing up sharks, you might like blowing up invading aliens.

There are plenty of romantic movies, both dramas and comedies, to watch around Valentine's Day and war movies to watch around Memorial and Veteran's Day.

My favorite time of year, though, is December when it's time for Christmas movies.

Growing up, we didn't have a TV until I was 10. Mom and Dad had a TV-VCR combo at the office for educational purposes and over the Christmas break they'd bring it home and we'd binge watch movies before that was really a thing. We'd all go to Videoville and everyone got one movie then we'd go home and watch them all that night and go back the next day. I saw a few movies I probably shouldn't have at young ages, like Lethal Weapon and other similar movies. I remember very little about those films but it was always my favorite time of year. Piling everyone on the foldout sofa bed to watch movies and roast marshmallows in the fireplace was so much fun for a little kid. The older kids probably didn't like it at much, but who cares.

When I got out on my own, I started doing my own version of movies in December. I started out with stereotypical Christmas movies, like A Christmas Story and Christmas Vacation. (I'm really not a fan of It's a Wonderful Life or White Christmas so I don't watch them if I don't have to.) I added in While You Were Sleeping at some point because I really love that movie. It's not TECHNICALLY a Christmas movie, though, so that began a new twist to my tradition: the non-traditional Christmas movies.

It's been disputed recently in our household what exactly that means. We've come to a fairly simple explanation. A Non-Traditional Christmas Movie (NTCM from now on) takes place at or around Christmas for the whole movie. Christmas is a key part of the plot, but not the reason for it. You could take Christmas out of the movie and it would still make sense.

Examples where the movie wouldn't make sense if it weren't Christmas: How the Grinch Stole Christmas, any iteration of A Christmas Carol (though the writers could probably figure it out), Elf, The Santa Clause, Miracle on 34th Street, Polar Express, Christmas with the Kranks, etc. The list goes on and on. It's easy to find traditional Christmas movies. It's not easy to find traditional Christmas movies that don't have Santa and since we don't "do" Santa, that makes it tricky for us.

Movies that meet the NTCM requirements might surprise you. This is MY opinion, so if you disagree, that's fine. But think about it.

Home Alone: family could forget Kevin at ANY time of year (and seriously, they do it twice. I don't feel like such a terrible mom when I think about that). Terrible parenting and frantic traveling happen all the time. Granted, it's more frantic at Christmas and there's more motivation for the thieves, but still. Could happen any time.

Die Hard: He could have been going to LA just to see his family, or for his kid's birthday, or whatever. It didn't HAVE to be for Christmas. They could have been having a party to celebrate a big merger or something. Same for Die Hard 2: She could have been flying anytime. Again, Christmas makes it easier to explain crowded areas, but it could be rewritten to be anytime.

Trading Places: it takes place around the holidays but the only part that really matters for that is the reading of the orange crops at the end. I have no idea when that happens in real life or of there's something similar that could be substituted, but I'm betting yes.

Gremlins: It's been a while since I saw this, but when I did, I'd totally forgotten that it took place at Christmas.

Love Actually: Christmas definitely helps to tie all the threads together.

Silver Linings Playbook: I can't remember, but I want to say it's around Christmas? I feel like I remember Christmas lights. I haven't seen it since it came out.

A Nightmare at Christmas is kind of in a gray area as to whether it's traditional or not. It covers two holidays, but Christmas is an integral part of the plot.

Movies that I personally think DON'T count as Christmas movies, even though they have Christmas scenes:

Harry Potter
Bridget Jones
The Lion, the Witch, and the Wardrobe
When Harry Met Sally
Raising Arizona

So every year, we make a pile of our favorite traditional and NT Christmas movies and watch them throughout the month. It's fun and comforting and I look forward to it every year. It's probably my favorite part of the month, second only to the excitement from the kids when they open their presents. The shopping and hiding and wrapping and the cooking and cleaning and transporting and keeping track of are stressful and tiring.

So what'd I miss? What are your favorite Traditional and NT Christmas movies? What movies do I need to add to my roster? Nearly everything I've mentioned I own, which shows you have extensive our collection is. If you don't watch a movie with Christmas in it, what do you watch? We also used to watch The Sound of Music at Thanksgiving, but it's soooo long. I like to keep it at or under 2 hours.

Thursday, December 17, 2015

Two out of four doctors agree, and that's good enough for me.

We had a cardio appointment today an I know you're all DYING to know what happened, so I won't beat around the bush.

The decision has been not to do surgery.

Yes, I realize we were told this back in August and then were thrown into limbo in September as we waited to hear from everyone and then in November were told "probably soon." It's been a roller coaster of emotion for me, too. Getting myself emotionally and mentally prepared to take my baby daughter half way across the country so a doctor I've never met can cut open her chest is not easy. And I've done it twice this year.

Dr. S heard from the doctor at Stanford, Dr. H, and he said he wouldn't touch Eden. Her sats are great, she's growing well, she shows no symptoms of any negative sort. According to Dr. S, Stanford is the hospital that does this heart the best, so she's giving his opinion a little more weight than the others. Dr. F in Dallas doesn't feel that her VSD (hole in the bottom) is big enough to properly do the double switch operation, so were he to repair her heart, it would involve a pacemaker, which would increase the likelihood of a heart transplant later in life and would almost definitely lead to heart block. As great as heart transplants are for people who need them, I really don't want Eden to be one of those people. Dr. B at Columbia thinks the VSD IS big enough and says he could do the surgery without heart block becoming an issue later on. Dr. S agrees that the VSD isn't big enough, so she was glad to hear that Dr. H agreed with her assessment.

As you can see, this kind of heart if controversial. Dr. S said you could show the same heart to three cardiologists and three cardio-thoracic surgeons and get 6 different opinions. Which is not terribly helpful to the worried parents.

Dr. S was brutally honest and said that she has not seen a lot of good long term outcomes from doing surgery to repair hearts like this on babies. They generally do much better when they're older, so obviously I want to wait even more now. Like, maybe 50 or 60 years. If we ever do it.

So yes, more wait and see. Wait and see if she gets bluer, wait and see if she continues to grow and hit her developmental milestones in an appropriate time frame, wait and see if she starts to get tired more easily and more quickly. All those will be signs that the right side of her heart is struggling and weakening and that will be the go ahead for the doctors to once again evaluate updated scans and tests and determine the best course of action.

Unfortunately, we have no idea when or if this would happen. Some people live their whole lives with no real problems, some start experiencing issues in their 40's, some in their 20's, some sooner. We will have to watch her her whole life. I really hope she's up for the constant scrutiny.

We'll see Dr. S again a couple of weeks after Eden's first birthday and then not again until June. We'll go to an every four month schedule instead of a monthly schedule and will go to Dallas for a sedated Echo once a year.

As for Eden's ptosis, we were thinking she'd have surgery before her June 2016 appointment. If and when we do something about that, Dr. S wants us to go to Children's for it. Currently, she's doing fine. Her vision seems to be just fine but if it gets to the point that it needs correcting surgically, they don't want surgeons in Abilene to touch her. We may go ahead and get a referral to a pediatric ophthalmologist at Children's and have them look at her next year, but we may not. I'm really hoping it's simply a cosmetic thing that she can live with for a long time.

This, I'm choosing to believe, is great news. I'm happy with it. I do see the side of "let's do surgery before she really starts to NEED it," but at the same time, I really don't want my daughter's chest to be cut open. Like, I can't even begin to describe how much I don't want that.

So Merry Christmas to everyone! It'll definitely be a happy one around here without this awful thing hanging over our heads. And she's such a happy girl, it's hard to be in a bad mood around her. She has the best smiles.

Waiting for the Christmas program at church. 

Smiling at Mommy

Saturday, December 5, 2015

Time is passing me by and I've lost my watch

You guys. I'm 32 now. Thirty-two! How did that happen? And when? The line "I don't remember getting older" has been running through my head recently. It seriously feels like just a little while ago that I was in college and that was over ten years. Ten. Years.

Aging is such a strange thing. I think our minds kind of quit aging really around our teens. That's why it's so hard for us to realize how old we are sometimes. That's why time slips by so quickly. I don't feel that different emotionally and mentally now than when I was 16 or 17. More confident and self assured, definitely. More knowledgeable about a great many different things for sure. But older? Good lord no. It doesn't feel like 16 was 16 years ago. I've been driving for over half my life. I've been out of mandatory school for 14.5 years. I've been married for 7.5 years. I have THREE CHILDREN (who decided THAT was a smart move? Me taking care of three kids seems like a bad idea.) I've got a son who is almost 5 and I've been in this current house for over 5 years, the longest I've lived anywhere since moving out of my parents house to go to college. When I sit down to add all the numbers up, I get to 32 years old and it still doesn't make sense.

It's like trying to balance a check book: the numbers are all there and (hopefully) add up evenly, but sometimes it still doesn't make sense. Did I fall asleep and miss something? Did I hit a time warp at some point? Maybe that was it. Time warp makes as much sense as anything else. That or I'm secretly Rip van Winkle.

And then at other times, yes, I am ABSOLUTELY 32. The idea of going out to clubs or bars or taking wild vacations or drinking all night (you know, stereotypical 20-something behavior) sounds exhausting. I'd much rather sit at home and cross-stitch and watch Netflix or Hulu or watch a dvd or listen to an audio book. (Maybe I'm actually OLDER than 32, based on my favorite activities. I'm ready to sign up for AARP! Cripes.) Chasing my children around a park or playground is tiring. Taking a big trip SOUNDS fun, but actually doing it is so not fun. We recently went on our annual New Braunfels trip and it was a lot. Packing for three kids and myself away for four days and planning on cooking while we're there....well, I filled my car and Austin's with our gear. And we used every bit of it. We played the games, spread the toys across the floor, watched the dvds, ate the food, wore the clothes, changed the diapers, used the Go-Pod and the pack-n-play, mixed up the bottles, drank, then washed the bottles. The last 24 hours I was essentially on my own. Yes, family was around but it's still really me. And it was tiring.

I'm 32 now! I'm getting older! My hair is still thick and dark, but now the color is helped along. I've got shiny silver hairs taking over and pushing the dark ones aside. My skin is still fairly smooth, but it's starting to loosen and crease. My body is thicker than 16 years ago, and for good reason. It's been stretched and filled and emptied three times. I've been marked by my 32 years on this planet. I've been physically scarred, and torn. I've been formed by life and changed from who I was, like a lump of clay. And the clay has been painted and now the paint is starting slowly to fade and chip away, but the cracks could be beautiful, too, if I let them.

If I embrace my new 32 year old self, embrace the stretch marks and gray hairs and coming wrinkles (though my mom doesn't have many so fingers crossed), embrace the canvas and the paint, then I'll be setting a good example for my children AND making my life easier. Complaining about how I look isn't good for anyone. I'm soft for little heads to lay on and my hair is silver to shine in the darkness when they're scared and need Mommy.

It's been an eventful 32 years. Moves, deaths, marriages, births, work, play, sleep, sleeplessness, so much has happened. And so much is still to come.

But seriously. Thirty-two years. Time flies when you're having fun.

I was seriously a cute toddler. Look at me!

In college: scraping wallpaper in our tiny bathroom to repaint it. We found something like 4 layers of paper. Not even kidding. I still have that shirt. It does NOT fit as well as it used to. 

This past weekend at my birthday dinner. 

Thursday, November 19, 2015

Ambiguity is kind of annoying, but also kind of not.

Sorry for the long delay! As I wrote, October is a crazy month for us normally and then the three kids all getting sick it made this year worse. November's been ok so far.

Today was Eden's monthly exam. We didn't have one in October, so it's been two months since the doctor has seen her. She was thrilled with Eden's growth and stats. Her oxygen levels have been great, above 90 even when she had croup, and her weight gain is good, too. She's active and healthy and happy and just a great little girl. She's up to 18#12 and 27.5" long.

When we saw Dr. S, she started off by telling me about her attempts to get Eden approved for the anti-body shot. The peer she did a peer-to-peer with is an oncologist who works with adults, so he didn't completely understand her description of Eden's cardiac anatomy. So he denied us. Dr. S has requested an appeal and is hoping that whoever she talks to will have a better understanding of the heart. We're all a bit skeptical.

Then, the part we've ALL been waiting for: surgical talk.

If you recall from my August post, Dr. S wanted to send Eden's chart and file to doctors at Stanford and Columbia to get a consensus because her gut reaction was to leave Eden alone for a while and not do surgery. There's a chance of heart block because of how everything is laid out, which would be bad. There's also a risk of heart block if they do nothing. Since she's not a surgeon, she wanted to get everyone's thoughts on Eden and see what they all thought. She's heard back from Columbia.

Dr. M is the doctor at Columbia and based on Eden's chart, he thinks he can do her surgery without the risk of heart block later on. He would want to do the surgery sooner rather than later.

Dr. F is the doctor at Children's in Dallas and he was initially saying he wasn't sure if he could do it without there still being a chance for heart block. He wants to do a heart cath once Eden is a year old and then potentially do the surgery shortly after.

I don't have a name for the doctor at Stanford, but a quick internet search only brings up one cardiac surgeon. They're having some kind of conference soon and Eden's case is going to be discussed. Hopefully Dr. S and Dr. F will get the info quickly after. Then, they'll sit down with all the info from all the doctors and be able to present several options to us. Afterwards, Dr. S said she recommends we talk to the doctors personally to ask any questions we might have.

We have final say in what happens, where we go, what surgery Eden has. The doctors are all there to help us make the best, most informed decision we can. Dr. S promised to be brutally honest with us as to her opinion as to what would be our best option, even if it's not them. No matter what, she'll be our pre and post care provider.

If we go with Stanford or Columbia's plan, we'd do the heart cath and surgery there....meaning traveling and being across the country for weeks. There's a slim chance that one of those hospitals will suggest a surgical plan that Dr. F thinks we can do in Dallas, and that's what I'm hoping for but I'm very skeptical.

So again, things are still ambiguous. But a little more definitive? Something. We're fairly certain that we'll be having a catheter procedure in the first three months or so of next year and very likely surgery shortly after that.

It makes me want to throw up.

I don't like hospitals or big cities and I despise the thought of Eden cut open and in pain during the recovery period. I hate the prospect of being so far away from the boys for so long. I hate the turmoil this is going to bring to my family and the uncertainty of the whole situation. I wish I could just ignore it and it would go away.

We're thinking we'll hear something definitive by mid December. Our next appointment is December 17, the week before Christmas. The next two months will be a lot of thinking and researching and talking and planning. And hopefully by this time next year, all the big scary stuff will be behind us.

In happier news, Eden is pulling up. She doesn't know how to sit back down so she kid of releases and falls, which makes her cry. I haven't gotten a picture yet, but she's pretty cute and SO proud of herself when she gets upright.

Austin has officially taken over as praise leader for Grace Falls at First Christian Church. So if you've ever wanted to sing or play an instrument in church, hit him up! He's looking for new blood for the band and pretty much anyone will be welcomed.

Eden's Medical Fund

She was fascinated by the baby in the mirror. 

Her hospital gown was a little too big. Maybe in a year or two it'll fit. lol

Wednesday, November 4, 2015

We Survived October!

It's been a while, I know. I'm sorry. In my defense, October is a bad month for us. Austin has the BEST robotics competition nearly every Saturday and works on it most evenings and this October, I had three weeks of the kids being sick, one after the other. I mean, I guess I appreciate that they didn't do it all together? But gah. It was not fun. When Eden woke up with croup after her brothers had had it the two weeks prior, I called the doctor and she just called in a prescription, saving me the $40 sickness visit charge.

Since I last wrote, mostly we've been dealing with the croup. First Elijah, then Asher, then Eden. Both boys started it off with vomiting and fever, then just the coughing and loss of voice that is croup. Elijah got done then two days later it was Asher and two days after him was Eden. Eden, surprisingly, handled it the best and Asher was the worst. Eden didn't throw up, she mostly just coughed and whimpered a little and was a bit more clingy than usual, but overall she did great. Asher whined and complained and cried and just generally got the short end of the patience stick because I was SO over it at that point.

Halloween was good for us. No trunk or treat by our church but the neighboring one had one that was pretty sad. We were the Ghostbusters family, with Austin and I dressed as Ghostbusters (t-shirts we got on Amazon), Asher a random skeleton (sure, why not), Elijah as the Stay Puft Marshmallow Man (costume crafting is NOT my strong point) and Eden as Slimer (she was perfect.) The kids and I wore our costumes for their Halloween party at FKO and then again on Saturday for the trunk or treat and then actual trick or treating in a friend's neighborhood. We came home with three buckets of candy. Not too shabby. lol

Mom organized the annual International Gift Festival (that thing has had so many names its hard keeping track) over Halloween weekend and I think it did pretty well. I haven't heard the final numbers, but when I was there working for 2 hours Saturday morning we had a steady stream of customers.

Austin's parents came down for the weekend to shop at the craft fair and to trick or treat with us. They wore t-shirts with the Ghostbusters logo on it, so they were part of the theme, too.

On Eden's medical front, we still have no news. I know, it's annoying. No one is more aggravated than me. It's been three months since the visit where we got the news we might not do surgery and no confirmation or denial of that. We didn't have an appointment in October because she's doing so well and there wasn't much need for one. Even with croup, her oxygen levels didn't drop much. She was in the mid-80s consistently during the spring and early summer but over the last several weeks, she's been mainly in the lower-90s, sometimes even the mid-90s. With croup, she was in the upper-80s.

She's crawling and thinking about standing up (she'll put her palms flat on the floor and straighten her legs into a standing position with her butt in the air, stand there for a moment, then sit back down like "well that didn't work." She still isn't a fan of baby food and does ok with table foods we give her. She loves puffs and yogurt melts and gnawing on basically whatever she can get into her mouth. Which recently has become her toes. Teeth into toes is not a sensation she cares for, yet it continues to happen.

So we're trucking along. Nothing terribly exciting happening around here. The kids are like puppies half the time, the boys rolling around wrestling on the floor while Eden gnaws on a toy nearby. Austin is finally getting to relax a bit since BEST is now basically over (there's a regional competition in Garland in a couple weeks) and I'm gearing up for the Thanksgiving expedition to New Braunfels. We have our next cardio appointment November 19 and I'm REALLY hoping they'll have something to tell us.

Until the next post, have a great week! Or month, as the case may be. In my defense, I only think "oh, I should post" at inopportune times, like laying in bed trying to fall asleep, or in the shower, or driving to somewhere. Never when I'm at home just hanging out.

Thursday, October 29, 2015


A while back, I joined a thing online called Influenster where I review products and occasionally get free products in the mail to try and review. Our first box was full of TastyKakes Minis, little chocolate cupcakes. Elijah, needless to say, was thrilled. That boy loves him some cupcakes.

I've always wanted to try TastyKake because of the Stephanie Plum books. THese did not disappoint. They do have that processed taste like most prepackaged snack cakes, but the mini size was great. It was just a bite for me and Austin and fit perfectly in Elijah's hand. There could have been more cream filling but it wasn't too bad, overall.

We don't usually buy stuff like this to have around the house because we would eat them and we don't need to, but that's really the only reason I wouldn't buy more. Austin and Elijah and I all enjoyed them. And Asher likes so little, he's not really an indicator of anything. Overall, we'd give them 4 out of 5 stars!

Tuesday, October 6, 2015

All's Quiet on the Home Front

Hello everyone!

Sorry for the long delay, but again, there's nothing to report on Eden. It gets redundant saying that, but it is what it is. I choose to see this as a good thing.

On the family front, Austin and Elijah both had birthdays and are now 32 and 3, respectively. We spent the weekend of Austin's birthday at a hotel so the boys could go swimming because they didn't get to swim nearly enough this summer. It was fun, though they were wiped out and slept most of Sunday and Monday once we got home. That Sunday, Austin flew to Canada for work for a few days. He had an adventure getting to Ottawa, but it was simple getting home, so that was nice. We four had a good week: I went to Dittos and finished out Eden's winter wardrobe and got some extra shirts for the boys as well as a couple Christmas presents for them.

Thursday,  I took Elijah out for lunch for his birthday and he had a blast running and playing at Chik-Fil-A with no brother around to boss him around. Asher was upset about not getting to go so this Thursday I'll take him to lunch by himself. Eden doesn't seem to care, since she gets lots of one-on-one time with me anyway.

Saturday was the Abilene Heart Walk. We got up and went to show our support, though we didn't raise any money. Asher cried and whined the whole way. Eden was fine, Elijah was great. Austin and I could have done a couple laps but because of Asher, we packed it in after just the one. Next year, we'll try to be more on top of things. Maybe bring the wagon or another stroller for the kids.

All through September, we asked Elijah what he wanted for his birthday, what dinner he'd like to have, how old he was going to be. We always got the same answer: two cupcakes. So he got two cupcakes for his birthday. Don't worry, we got him a couple small things. He's 3, he doesn't need a lot of presents. Besides, BB and Papa took care of that: he got a pile of books (that Asher commandeered), three trains for his collection, a plate and bowl set that match his backpack, and a Fisher Price record player. He ignored everything but the trains....which he's already attempted to flush down the toilet. So that was fun. After his birthday, we asked him how old he was and he said "Inspector Gadget" so...there's that.

Asher has been doing great with his bowel issues. He's even back in regular underwear during the day! This is huge. He still has discomfort when he goes to the bathroom, but not as bad as before. And he's USING the toilet and feels that he needs to. He went a whole week with no accidents so he got a special treat: a dvd he'd been wanting for a while. Luckily, I got it for free in a giveaway, but he doesn't care.

Eden is doing great. Her weight gain has slowed down a lot but she's not stalled or going backwards so I think we're ok on that front. She was going to slow down anyway. She's currently got a little cold or something so is a bit irritable, but not too bad. She's mostly got a runny nose and she hates having her nose wiped but her oxygen sats haven't decreased so we're mostly just keeping an eye on it. She hasn't had any fever so I'm hoping its maybe some kind of allergies or something.

She's got two teeth now, though not showing a ton of interest in using them. She doesn't want to be fed anything, she only wants to feed herself, which severely limits what I give her. She isn't terribly interested in the baby food frozen drops I made her (pour a jar of baby food in a baggie, snip a corner, squeeze it onto a cookie sheet in drops and freeze) but she loves the Gerber puffs and cookies and soft breads, basically things that all but dissolve. I've started just giving her tiny pieces of whatever we're eating and she sometimes eats it, sometimes looks at me like I'm crazy. She's going to be the oldest person still on formula.

She's still not crawling or pushing herself into a sitting position, but she manages to scoot around anyway. She always ends up underneath furniture, which is getting to be amusing. She'll get up on her hands and knees and kind of bounce her butt, then she'll go back to her tummy. I keep thinking any day she'll start crawling, but we thought her tooth would pop through any day and it ended up being two months. She's really happy just being carried.

I think she likes being a baby. Cute clothes, someone gives you food that's easy to eat, people carry you everywhere, what's not to love? Really, the only thing she doesn't like is being alone in a room. She likes to have a family member nearby.

Mostly, we're just a family doing things. Nothing terribly interesting, either. The kids go to day care twice a week, we go to church once a week, Austin goes to work five times a week (though now that it's October it'll be six times a week), I read books and cook food and do whatever shopping and errands need to be done for the family to get by. I take the kids to MOPS and the library and sometimes to lunch to play. We think about the zoo (but ugh) and the park (double ugh) but stay pretty close to home because I'm lazy.

All is well here. Nothing new to report, nothing exciting going on. Kind of like a family without a heart baby.

Under Oma's couch. Because that's where the baby goes, right? 

She gave up halfway through and went to sleep. Gotta love the baby butt in the air sleeping position. 

Elijah's birthday lunch. Too busy eating to take a decent picture, this is the best I got. 

Elijah's birthday breakfast. When they heard it was his birthday, they gave him a free donut!

Asher only wanted donut holes. 

Eden was willing to help anyone who might want to lose a donut her way. No one did. 

Me and Elijah on his birthday. It's hard to get him to sit still long enough to get a picture. The back lighting doesn't help. 

Asher with his new dvd!

Walking in the Heart Walk

Asher is screaming about being tired or something. Elijah's excited to be outside walking.

Asher declined having a picture taken with the helicopter. 

Saturday, September 19, 2015

No news is annoying...but sorta good?

It's been two days since our last appointment and about three weeks since the last blog post. It's been blank because there's nothing to report, really. good and bad? Maybe?

First off, Eden.

She's great. Up to 17# and some change, about 30 inches long, growing to everyone's satisfaction. She's happy and healthy and gets compliments everywhere she goes. Seriously. Everywhere. I can't walk through a grocery store without at least one person saying "Oh, what a beautiful baby!" or trying to get her attention and make her smile. It's SUCH a trial.

Last we heard from the doctor was in August and she wanted to get outside opinions from doctors in New York (Columbia) and at Stanford. She hasn't heard from them yet because first it was her vacation, then it was theirs, and now she's trying to get everything together to send to everyone. She's also decided to send everything to a doctor at Boston Children's Hospital. So, three major hospitals in the US will be looking at Eden's scans and charts and coming to a decision. That's pretty cool. She's still wanting to just leave Eden alone and watch her. They anticipate that she'll likely get bluer (have more difficulties) when she turns a year old, but since her oxygen levels have been stable since she was about 6 weeks old, that may not happen. If she gets into the lower 80's/upper 70's, they'll want to do surgery. She's currently in the upper 80's/lower 90's, even with some congestion that could either be allergies or somehow related to teething (she's got those two bottom teeth just WAITING to erupt).

I asked about the weaker right ventricle doing the job of the stronger left ventricle and whether or not that would be an issue later on without surgery and she said that there's really no way of telling. Some people have to have surgery to fix it, other people live with it just fine. There's no way to predict which Eden will be.

She offered to space the cardio visits out to every two months if that's more convenient for me, but I said if they want to see her every month, we'll be there every month. So we're still on the monthly schedule.

I made sure to verbalize that if the doctors on either coast want to see us in person, we're willing to do that. It'll be tricky, sure, but we'll do what needs to be done. Plus I'd rather spend a thousand dollars on plane tickets and hotels than $250k on surgery if given the choice.

Eden sits up well now, but she doesn't push herself into a sitting position. When she inevitably falls over, she just rolls onto her stomach and scoots around. She's not crawling or pulling up either, but no one is concerned about that. We haven't put her on the floor much to get the chance to learn that because we're worried about germs and the boys. Within a week of putting her on the floor more, she started sitting up. So I'm hoping in the next month or so she'll start crawling and catch up on her other milestones.

She also hates baby food. She gives us the most adorable disgusted looks when we try to give her something on a spoon and has started pushing it away or turning her head. We discovered that she will eat if she can give it to herself, which is tricky since she's not got the best hand eye coordination yet. But she still manages to get about half the puffs and yogurt melts into her mouth when we put some on the high chair tray. She won't hold her bottle, either.

She really just likes being waited on hand and foot.

Asher is doing better after his issues a couple weeks ago. We still have some problems, but everything we've been doing seems to be helping. At least some. We still have accidents, but they're a lot fewer now. So yay for that.

Elijah has been doing so great. He's really a lot calmer and sweeter and gentler....and then I get a notice that he hit another kid at MDO. And two of his teachers. *sigh* But he's 3. And this isn't the norm anymore. So...half a win? His birthday is in less than two weeks and I asked him what he wanted for his birthday last night. We'd been talking about cupcakes and we'd gotten some at the store for a treat last night. He was already planning on sharing his with Asher so he response to what he wanted for his birthday in two weeks was "Two cupcakes." Well ok then. That's easy enough.

Austin's moved into a new position at work where he's primarily training the customers on how to use the software/tools/etc that they've purchased. That means sometimes they come to him (a Danish customer in a couple of weeks) and sometimes he goes to them (he was in Charlotte for a week a couple weeks ago and goes to Canada next week). This will be an interesting adjustment for us. We're used to him being home every night so adjusting to him being gone on a semi-regular basis will be interesting. The kids are all pretty great about it: we just extend our daily routine and everyone survives. At least while he's in Canada I'll have MDO to send them to....and hopefully I won't be sick. I did tell him that if he gets sent overseas for training, we may go with him, depending on the location. Part of me wants to go ahead and get passports/passcards for the kids just in case. He typically gets about a two week heads up, so they'd be something we'd need to have on hand. Plus its the season of BEST so he's busy most weekends and evenings getting ready for that. That'll all be over with in November. Until next year.

I'm keeping everything going. Laundry, limited house cleaning (we have a housekeeper that comes once a week, paid for by the grandparents, to help with keeping things clean for Eden), meal prep, shopping, appointments, etc. I'm the manager of the house and it's a pretty sweet gig. Long hours, little pay, but still fairly gratifying. Boys running at me shouting "Mommy!" or Eden bouncing and saying "mamamamamamama" when I pick them up from MDO or the church nursery is a pretty nice reward.

So like I said: Not much to report. Things are continuing here like always. Kids are growing and being kids, adults are adulting and planning or trying to plan for the next thing. And the sun rises and sets and the world keeps on spinning.

Wednesday, August 26, 2015

You know you want an awesome shirt

I've got a new favorite shirt. It boldly declares that I'm not the best mom or the worst mom, but I'm the okeyest mom. I don't feed my kids an exclusive diet of processed junk (though somedays that's ALL the boys will eat) but I don't do the home cooked meals from scratch with lots of fruits and veggies every day. I don't do craft projects and science experiments with them, but I don't just ignore them all day every day either. I do the best I can and that makes me okay.

You can get your own shirt now, and declare that you, too, are an okeyest mom. I think there's more of us than of the Pinterest lunch/activity/outing/etc moms that make us roll our eyes or feel bad about ourselves.

Even better than letting teachers and strangers know what to expect from you, some of the proceeds go to moms in need, whether because they or their kids are sick or things are just difficult right now. We are among that group of moms this time. I'm super excited to get another shirt, and am so grateful for whatever amount we'll get from the orders. Even though Eden is doing so well, there are still medical expenses we have to cover...and the Synegis shots are coming up next month again. We'll have to fight with the insurance again, I'm sure.

So order a shirt! It's for a great cause and is a great way to let people know what kind of mom you are. And if you're a man, maybe order one for the mom in your life. :-)

World's Okeyest Mom Shirt

Monday, August 24, 2015

Today has been rather crappy

Today. *sigh*

So, this may be a TMI post for a lot of you. Be warned. I will be discussing poop. If you don't want to read about that, you should probably just close the tab and find something more entertaining and less gross.

For those of you who stuck must really love us. :-)

Some of you know that Asher has been having trouble with the pooping part of potty training. He was doing ok last fall and winter, but once Eden was born, he regressed. Elijah did, too, we were expecting that so we weren't surprised. A new baby is in the house, she's suddenly got special needs for her health, it's a topsy turvy time, they wanted more attention. We figured Elijah's insane tantrums and Asher's dirty underwear were just a reaction to all that.

Fast forward seven months and Elijah has calmed down a ton. Maybe he outgrew it, maybe we just figured out a better way of dealing with him, who knows. He has days where he is just the best kid ever. Asher was still having issues. Like...three times a day. It was never a LOT in his underwear...or at least not often, but it was often enough I just started throwing underwear away because ew. (This is why I don't cloth diaper.) Last night at Mom's, there was an incident and in talking about it with Mom, she said this isn't normal, we need to get this checked out.

So we did. Today, I called our pediatrician and they got me an appointment this morning. I went in to get Asher up, telling him we're going to the doctor to see if there's something that makes his butt hurt when he poops (his main reason for not wanting to use the potty). He was EXCITED about this. He jumped up and started getting dressed quickly, giving me his usual running commentary on his activities the whole time. I got Eden changed and dressed and set up with a bottle while I made a few more phone calls (we should probably get the broken window fixed before the cold weather hits).

While I'm on the phone, Elijah comes into my room with his diaper hanging around his knees and his dangly bits exposed and informs me he needs a diaper change. I agree and say just a second. He says ok and then PEES. ON. THE. FLOOR. I just stare at him in shock. He looks down at the puddle and says "Oh. I peed. Mommy, I peed." No kidding. (My kids are super smart.)

So I clean that up, get him changed and dressed, gather up what we'll need for the next couple of hours and we head out. At the doctor's office, Asher marches in and loudly and proudly informs the other mom in the waiting room "We're going to see the doctor because poop makes my butt hurt." Everyone laughs....because what other response do you have to that declaration?

The doctor checked him over and agreed that his history the past few months is unusual and there's likely something wrong. Nothing physically that we can see on the outside of his body, so she ordered an x-ray. Asher's now excited because he's going to get a picture of his stomach. So he keeps stopping people, lifting his shirt and saying "I'm getting a picture of my tummy because poop makes my butt hurt." Lots of amused grins.

We hit Sam's because we need formula and we're right there and it's the cheapest place. And of course I didn't take my purse in because three kids and a purse are too much, but unfortunately I forgot the correct credit card. I left the boys at the check out with free samples of fruit snacks and hauled to the car to get the correct card, then hoofed it back. OF COURSE I was at the farthest check out. It should be noted that power walking in flip flops while wearing a 16 pound baby is pretty good exercise for your calves.

We pay and leave, heading to the library downtown to drop off last week's items, we swing by the house to drop off the check for the housekeeper I forgot to leave, then we head over to see if Mom or Bob are available to watch Eden and Elijah while we get Asher's x-rays. They're both out, but Mrs. Kathy is at her daughter's and she graciously agrees to watch them for me.

Asher was marching all over the clinic, informing people why he was there, lifting his shirt for his picture, asking questions (like why did the admissions lady have a gap in her teeth (was she missing a tooth?)), making friends all over the place.

Where in the world did I get such a charismatic child?

The x-ray technician was another new friend. He told Asher there were lasers in the x-ray, which Asher wasn't too thrilled with because he didn't want to die. I told him not all lasers killed you, that Oma had had laser surgery on her eyes to fix them. He promptly decided he wanted laser surgery on his eyes. I asked him what was wrong with his eyes. He said nothing, but he still needed lasers.

He was very obedient and still for the x-rays and then was excited to see the images. He had no idea what he was looking at, naturally, but was interested to learn.

Asher, quite literally, is full of crap. (so sorry for the next's gross)

His bowels are full all the way around. He has a large mass at the bottom that's not coming out but the new stuff at the top kind of oozes around it (sorry sorry sorry) and that's what we've been mostly seeing these past few months. He has very little control over it.

So we go get the younger kids and head home. I make lunch and we settle down to play and rest and wait for the doctor to call with instructions. After about 2 hours, she hasn't so I call and they say she'll call in a bit. Thirty minutes later, she calls and says he needs an enema and then to be on some kind of stool softener for the next 5-6 MONTHS. Where the mass is, the bowel is being stretched and it won't just snap back into size once the mass is gone. It takes time (kind of like a uterus, so we've got that in common). We have to clear the mass with enemas and then keep things soft and moving for the months it'll take for everything to shrink back down.

Who wouldn't love the news they get to give their 4.5 year old son daily enemas for a few days? At least it's not so bad he needs surgery.

I had an enema left from my pregnancy and texted Austin to get some Miralax and then settle in to wait for Austin to get home. In the meantime, Asher has brought in some math workbooks we bought at Sam's because he wants to learn math. So we work on those for a bit. Clocks are easier than adding, though he gets frustrated because he writes really big and crayons aren't erasable when he makes a mistake.

I called Mom to update her on everything and she offers to come help with the enema so we're not sitting around waiting for poop all night. I take her up on it.

(More gross ahead)

We got him situated in the living room on some towels with a training potty nearby using some tips given to me by another parent who's been through similar stuff before. Asher was AWESOME and didn't move or flinch or cry at all while we were giving it to him. He laid still for several minutes before starting to say his stomach hurt, so we helped him onto the potty. About ten to fifteen minutes later, we checked and we had success.

Mom headed out, giving instructions on how to do it tomorrow. Before her car left the driveway, Asher threw up. And pooped some more. The living room smelled so great.

He sat on the potty for a while, then Austin got home and took him into the bathroom to clean him up while I made dinner (yeah....I still made dinner after all that).

So our day of gross has (hopefully) ended. Asher is feeling better and in pull-ups for a while, Elijah threw an epic temper tantrum in the middle of it all because it's been a week and we STILL haven't gone to BB and Papa's house, and Eden got to witness everything with a vague sense of "what have I been dumped into?"

Part of me feels bad for yelling and punishing him so much the past few months for his accidents, since we now know that it's not his fault and it was almost all pretty involuntary, but at the same time, we didn't realize that before and I did have a few other things going on. So I'll just move forward with an intention to be more forgiving and less frustrated. At least for a while.

I feel like a margarita is deserved. And a night out away from the pee, poop, throw up, spit up, drool, spit, etc that my children have inflicted on me today. I mean come on.

At least no one bled on me today. Though it's only 8 so who knows what'll happen in the next four hours.

"Let's take a nice picture for the lady." (they wanted a picture for the medical records)
"Like this?"
"Actually, yes. That's a great picture."

Sunday, August 16, 2015

This time, Eden wore the hospital bracelet

We're home from a weekend in DFW and we're slowly starting to recover. This may be long, but there's updates at the end, so bear with me.

The kids and I left Thursday afternoon after going to see Shaun the Sheep Movie in the morning. We got to Arlington around 5 and hung out at the in-laws for a bit so I could avoid as much traffic as possible. The boys immediately started playing with the trains Papa had recently acquired and didn't really stop for the next 48 hours. Around 6.30, Eden and I headed on to Dallas to the hotel. I wasn't hungry when we left, but it was about an hour drive and I knew I'd want something later on. I should have stopped and grabbed something on the way, but I wanted to get checked in and settled first. There was a diner across the street, but the idea of strapping the baby on and going to a restaurant alone was exhausting, so I took advantage of the fact that the hotel has room service. I LOVE room service, so that was exciting for me. We watched Sixteen Candles and The Breakfast Club while I ate a burger and took a nice long shower (alone!) and then went to bed at a decent time.

Friday morning, room service again came through and I had a waffle while watching the news and Eden eyed me from her crib. She didn't sleep well in it the night before, so ended up in the bed with me. It never ceases to amaze me how much space a tiny baby can take up. It was a king sized bed and I think she took the middle third. She wasn't allowed to have anything to eat after about 5am, so she was hungry when we left at 8 (she had her last feeding at 9pm the night before).

At the hospital, I found the right parking area and got right to the cardiology clinic. We checked in and did the weight and length measuring (15#15 and 26") and then waited for a bit before they moved us to the room where they did the echo. At 9.30 they gave her 2/3 of the max dose of the sedative...and she spit out probably half of it. Not spit up, spit out. She didn't like it. Since there's no way of knowing exactly how much she got, we had to wait and see if she'd go to sleep on her own. Twenty minutes later she was still wide awake so they had to order the other 1/3 of the dosage and give her that...and she threw that up. Finally, we pulled out the bottles of milk that I'd pumped the night before and that morning and of the 6.5 ounces total, she drank 4.5. She finally fell asleep around 10.45. Baby girl was just super hungry.

Before all that, I did warn them that I have to have more sedative or pain reliever type medications than normal. Granted, the only time I've had anything like that was for oral surgery, dental work, and post delivery, but nearly every single time, the doctors have had to give me more than what was recommended for a person my size. And then it wears off quickly. I mentioned it wondering if that might be something that Eden has inherited. Since she started to come out from under the sedation after about 30 minutes, I'd say yes. The doctor agreed with me.

After she woke up, we were moved to another room to wait for the doctor to look at the scans and come talk to me about what was there. We waited for a little while, during which time I gave Eden the last little bit of breast milk.

The whole purpose of the sedated echo was to get a better look at her VSD, the hole between the bottom two chambers of her heart. Those chambers are switched, meaning the weaker right ventricle is in the stronger left ventricle's place and they're doing each other's jobs. The hole is letting the blood mix between them a bit, which somehow helps the right ventricle do the harder work of the left ventricle (the PDA helps with that, too) and the pulmonary stenosis on the pulmonary artery is helping the left ventricle stay strong, in spite of it doing an easier job.

Because of the pulmonary stenosis, the doctors have decided that doing the double switch, where they switch the pulmonary artery and the aorta to the correct ventricles, is not the best option. What they're considering instead is putting a conduit in place from the right ventricle to the pulmonary artery and using the VSD as a conduit from the left ventricle to the aorta, forming a sort of X to connect everything together the right way.

So Friday, they wanted to look at the VSD to see if that was possible.

The VSD is not like a two dimensional hole. It's three dimensional and that makes things tricky. The hole is narrower at the top, near the aorta, than at the bottom, into the left ventricle. They're not sure if it's TOO narrow to use for the conduit purposes. If it is, they could widen it during surgery, but if it's too wide, or they widen it too much, that could lead to heart block. Heart block is basically where the heart beats too slowly. The electrical signals between the upper and lower chambers are blocked, so the heart doesn't beat like it should. Some people live with it for years, some people die quickly. Sometimes heart block necessitates a pacemaker, which increases the need for a heart transplant.

The main thing the doctor said, though, is that her gut instinct is to not touch Eden's heart. She's feeling like the risks of heart block from surgery are about the same as if we don't do anything (my words, not hers, but my understanding and explanation). Eden is doing so well these days, no issues, great weight gain, no illnesses, no negative reactions to anything, that she feels like we should just do nothing but watch her.

She is going to send the scans and Eden's chart to doctors in New York where she did her fellowship and to a doctor at Stanford who has a lot of experience with hearts with this anatomy and she'll share it with the doctors there at Children's to get an overall consensus on what the best idea is for Eden. They'll weigh the pros and cons of surgery vs watching and we'll go from there. She said she'd get back to me within a week or so, but I'm not going to stress too much until September. I want them to have enough time to really form a solid decision.

When I told Austin, he immediately thought of a man from work he knew of who died at 50 because of heart block and when I told Mom, she immediately asked about the right ventricle wearing out over time. I didn't really have answers for them (this is why I like someone else being with me: I don't always think of the questions) but I'm cautiously optimistic about no surgery for a while, maybe even years. I'm assuming the right ventricle being weaker would mean they'd have to do surgery at some point, but that's something I'll ask about at our next appointment in September...or I may email the doctor about it this evening. lol

They always make a point of telling us that nothing is going to happen suddenly. Eden is not going to be ok one day and then horribly ill the next from her heart. Her heart will gradually wind down, like batteries in a toy. There are always instances of it being sudden (Dad's death was definitely sudden) but they're not the norm. Our constant checking of her pulse ox every day, her monthly exams with the cardiologist, our vigilance about people being sick around her are all good things to helping her stay strong and healthy. I told the doctor on Friday that if we needed to start coming to Dallas every six months or so for exams like this one, we could definitely do that. I hope she understood that if she wants us to go be seen by another cardiologist somewhere, even Stamford or New York, we'll absolutely do it.

So, yes, there are still a lot of questions, maybe more now than before, but there's also a chance that she'll come through this without needing surgery. I'd love that, but I'm also realistic to know that it's unlikely she'll NEVER need surgery. Not with her little swiss cheese heart.

After leaving the hospital, I got several texts, pms, and phone calls asking for an update. We had lunch with a bunch of Arlington people on Saturday afternoon and dinner with friends Saturday night and they all got the news. So I know for some of you, this is a repeat, but for others it's new information.

The boys enjoyed their time at BB and Papa's house, and when we left to go to dinner, they were confident we'd be returning for the night. When we left our friends' house, they complained they didn't get to play more with their new friends and then that we didn't go to BB and Papa's house. Elijah said he wasn't going home, he was going to BB and Papa's house. I was half tempted to drop him off at a church and call BB and Papa to come get him.

All three were asleep when we got home, so Austin unloaded everything while I was sick (maybe nerves from the hospital exam finally caught up with me?) and then we all went to bed pretty happily. It's always nice to be back in your own comfortable bed. Today has been some slow unpacking and putting away and laundry and resting. Tomorrow, we get back to the usual routine for a while. And this week....Daddy's home!

Eden's Medical Fund

Hanging out at the hotel. I really think her ptosis is getting better. 

I walked through the hotel with my hair like this. Yikes. 

Being cute and coy

Happy girl

Playing with her toys in her little hotel crib. It wasn't big enough. 

Asleep on the hotel bed. 

Where's my breakfast, Mom?

Playing with her toys while we waited.

The wall was a dry erase board with dot-to-dot fish. Asher would have loved it.

Now the hospital bracelet has her interest.

She got cold being mostly naked so I wrapped a blanket around her.

No nap is as good as a Daddy Nap

Tuesday, August 11, 2015

Upcoming Procedure

It's been a bit of a crazy week around here.

Last week or so, we got a call from Children's. That's always enough to make my blood run cold, seeing "Unknown" on the caller id. They're always unknown, for whatever reason, and 9 times out of 10, the unknown caller is Children's. I missed the call, so we got an email, which sends another thrill of dread through me.

They want us to come to Dallas for a sedated echocardiogram on Eden. We have an echo done every other visit but Eden is a little wiggle worm and isn't still enough for the test to be super detailed. The congenital echo specialist doesn't come to Abilene, so we need to go to her. We met her briefly when we went in January and she's a very nice woman. It'll be a simple procedure, they'll put her to sleep, do the scan, and then we'll wait for her to wake up and eat before we're free to go home. All told, we should only be there for a few hours.

Figuring out all the logistics was, of course, a pain. More so this time, though. Austin's out of town and won't be back until Friday. They originally wanted us to come the Monday after, which is SUPER inconvenient, but when I asked about Friday, they said that was fine.

So the plan is, the boys and Eden and I will go to DFW on Thursday sometime. The boys will stay with their grandparents that night while Eden and I drive on to Dallas to stay in a hotel close to Children's since we have to be there at 8.30am on Friday morning. After the procedure, she and I will head back to Arlington and reunite with the rest of the family. Austin's flight lands at DFW airport around 7.45 that morning, so his dad will go get him and the two of them will hang out with the boys. Austin's mom will, too. They boys are super excited about spending the night at BB and Papa's house, but I think it's more to do with the toys and Netflix than anything else. A change of scenery is always nice for kids.

Austin left last Thursday, making this trip the longest we've been apart since we got married and the longest either of us has been away from the children. And of course that evening, I started feeling sick. And got worse. Friday I was definitely down and out. Mom called on Saturday to take Eden, since she's not supposed to be around people coughing and snotty (we had to retrieve her from the nursery at church one Sunday because a coughing snotty child was dropped off) and I asked about all of us coming so I could get some rest. So we all packed up and spent the night at Oma's house. The boys thought that was great, and Eden loved having people holding her again after two days of not being held much more than for transportation between areas. We went home Sunday evening, by which time I was feeling a lot better.

And of course I had planned to do some bulk cooking this week. And had some activities planned with the boys.

So it's been a little crazy, packing up for an impromptu night away, trying to get better from a nasty cold/allergies/whatever the heck this is, trying to keep these kids alive in spite of their best efforts (Elijah got knocked into a window and broke it last night...he's fine, just got the bejeebus scared out of him by Mommy). Today we'll get through as best we can and tomorrow we'll probably start packing for our trip. Packing and preparing for three kids is exhausting. Moms don't get vacations. Not if they're traveling with their kids.

The boys have been great through all of this. Elijah hasn't thrown nearly as many temper tantrums as usual, Asher has been as helpful as he can.

Anyway, they currently need help and since I'm it until Thursday, I need to go. As always....

Eden's Medical Fund

Saturday, August 1, 2015

A Glimpse

Yesterday Eden had her six month check up at the doctor. She's doing great, her weight gain took a dramatic leap so her growth arc was a nice gentle curve with a huge spike at the end. She got her shots, which she wasn't a fan of, but she was a trooper.

While we were there, we were waiting in the exam room for the doctor, as usual with any medical exam, and the boys were being boys: Elijah was loud and into everything, moving his little plastic chair across the small room so he could be separated from Asher and me and Asher was sitting calmly in the other plastic chair reading a magazine.

In between stripping Eden down, weighing her, texting Austin her physical stats, yelling at Elijah to stop whatever he was doing, and then settling down with Eden to give her a bottle, I glanced over at Asher and something about how he was sitting made me think of Dad.

My boys don't look like Walkes. They have a pretty good mix of me and Austin (I think anyway) but I think they probably likely take after Austin's side more. Their feet and the way their teeth are shaped look like Mullins feet and teeth. Their eye are Mullins eyes. But yesterday, for the first time ever, I saw my dad in my children.

Asher was sitting with his legs crossed at the knee, the way women typically cross their legs and also the way Dad crossed his legs, and reading a magazine. He was excited about something in it and was telling me about it animatedly. Then he went back to reading, his legs crossed, his magazine held up in front of him.

I think it was the legs. You don't often see men sitting that way.

Every once in a while, I truly grieve for the man my sons and daughter will never know. I grieve for the experiences they'll never have. They'll never get to crawl into Granddad's lap and read a book or go camping with him, or hear him say "Wowee!" when they come in the door or give him a kiss. They won't get to go to him for help with physics homework, or have him drive them to school or pick them up after. They'll never get letters or cards from Granddad telling them happy birthday.

Don't get me wrong, Papa Bob and Papa are GREAT grandfathers. They take time to play with the boys and spend time with them and be present in their lives, and that's so great. Papa Bob fuels their interest in technology (mainly his iPad) and Papa fuels their love of trains with gifts of train tracks and rides on trains at zoos. They both are wonderful about taking the boys, Bob for an afternoon, Allen for a night when needed. My kids love their Papas.

But as great as the grandfathers my kids have....they don't have MY dad as a present grandfather. It's just not the same.

I kind of figured I wouldn't really see much of my dad in my children since he's not around to impress himself on them. They know sort of who he is, since we have pictures of him around the house and his owls are on display, but it's more of a vague idea than a concrete one.

After seeing Asher and having that "holy crap that's Dad" moment, I thought about it a little and I see more of Dad in him than I realized: his love of reading and learning (Dad was almost a professional student before he decided on medical school), his fascination with science and astronomy and engineering, he love of stupid jokes, the way he loves his family and playing peekaboo with Eden.

If my sons grow up to be half the man any of their grandfathers are and were, I'll be happy. They're so lucky to have three awesome men to look up to and copy. They've got five great uncles (and three great-uncles) to look up to as well. They're surrounded by good men who are all willing to help them and show them how to be good men in their turn.

I didn't get a picture of Asher, which I wish I had. Between juggling Eden and wrestling Elijah down, by the time I got my camera ready he'd changed positions and the moment was lost. Maybe he'll do it again, maybe he won't. But either way, I love that my dad is still here in as small a way as how my son crosses his legs and holds a magazine.

Thursday, July 16, 2015

If I'm wearing a hospital bracelet, it must be Thursday

Eden's check up today was great. As usual.

Mom decided not to go with us this time since there's been so little going on at her visits the last few times (they're kind of boring). It was a good one to bail on, since the check in people were short staffed and we sat in the waiting room for 45 minutes before the nurse from Children's came and told them to start checking in the patients for the cardiac clinic. So I was one of the next ones and was waiting outside the clinic 15 minutes after my scheduled appointment.

Once in, everything went as usual. Eden's weight is up to 14 pounds 11 ounces (she's apparently a bit of an overachiever in that aspect) putting her finally in the 15th percentile. Yay for her! She's also 26 inches long, which makes sense since all her clothes are baggy around by fitted length wise. We had a bit of trouble getting her pulse ox and pulse, but we finally got them and she had good numbers for all of that, as usual.

We were originally scheduled to have a doppler on her legs next week to make sure there was no physical reason for her cold feet but since we were there and its the same office, we went ahead and did it today. And of course, her veins and arteries in her legs and feet are great. The tech said she'd never done that can on a person this young before, so that was fun for everyone. Eden fussed a bit because we had to stretch out her legs and keep them still for the scan. We placated her with her plush ladybug rattle and a bottle.

There was some concern about her dropping her fourth bottle of the day, but considering she gained about 12 ounces in the past week AFTER dropping that fourth bottle, I think she's good. Her fussiness recently is being attributed to teething, also evidenced by her constant drooling and gnawing on her fists. I had no idea of there was maybe some medical reason we couldn't give her Orajel on her gums but the doctor said its ok to give it to her.

She has also been cleared for childcare! Super exciting news. I can leave her in the nursery at church on Sundays and at FKO periodically. provided there's no sick kids and the workers wash their hands. It's inevitable that she'll get sick but we'll take care of it when it happens. I'm looking forward to dropping all three off and maybe having a day to myself. Haircut, movie, nap, lunch with a friend....shower. lol

The big exciting thing (though getting to leave her at FKO once in a while is pretty huge) is that they've decided not to even try anything until she's a year old. They anticipate her sats will start to drop around that time, so that's when they'll do the catheter and then her surgery. I was all prepared to tell them that I was not interested in having her surgery past the first part of October because I want to be home for Christmas with the boys but since they're postponing everything until she's 1, there was no need! I'm pumped about that. Of course, that means we'll start over with the deductible and out of pocket (which we knew would happen) but we'll very likely hit it almost immediately.

So as usual, she's doing great, the nurses and doctors and techs all love her. As do we. Of course.

Asher was being punished with no tv so he made up for it by reading to Eden. He read her all of her books on her shelf: several books about ladybugs, Alice the Fairy, How I Became a Pirate, and The Fantastic Flying Books. She seemed pretty engrossed. 

Thursday, July 9, 2015

Keeping an eye on things

So many posts so close together and then nothing for a while....that's the way it goes around here.

At Eden's two week check up, she was diagnosed with ptosis, a weakened eyelid. It doesn't bother her, but it could affect her vision over time. It'd been a bit of a chore getting an appointment with the pediatric ophthalmologist: she had a baby on January 30, so was on maternity leave when Eden was diagnosed; everyone we talked to said she was awesome and to wait until she was available, which wasn't until about a month ago; she's not covered under BCBS so we had to go through a three week process of getting her pre-approved. But we finally got everything together: appointment on a day when the boys have FKO and pre-approval from BCBS.

Eden had her appointment today and of course did great. She smiled and cooed at all the staff and just generally made her presence known in a sweet way. Eden's eyes are otherwise great. She has a bit of astigmatism in both eyes, but it's about the same so she won't need to have glasses right now to correct anything or keep anything from getting worse. Since Austin has astigmatism, she comes by it honestly.

Otherwise, she got a clean bill of eye health and the doctor wants to see her once a year to keep checking everything to make sure things don't get worse. Since we were pre-approved for six visits between now and June 4, we went ahead and made an appointment for June 2 or so. Good to be prepared, right?

I mentioned that my ophthalmologist said he wasn't sure if they'd even consider surgery due to her heart but the doctor today said she didn't see an issue. She said since she wouldn't recommend having surgery on Eden's eye until she's at least 4 when there's a lot more eyelid tissue to work with, and since Eden's heart surgery is going to happen in the next year, she thinks there will be no problem fixing the ptosis in a few years.

So yes, that's another surgery to schedule for Eden. Luckily, this doctor is in town and operates at Hendrick's. So we'll just have to hope that by the time Eden's ready for that surgery, they and BCBS have made up. Otherwise, we'll go through the pre-approval process again.

Everything else is good. Eden's growing so fast. She's up to 13#15 as of this morning, so probably an actual 14# by now. Which is twice her birth weight. She hit it two weeks early! Go baby! The boys are doing well, too. Reading a lot and enjoying movies at Century this summer. Austin and I have been working and keeping up with the kids. So all in all, a pretty good summer around here, though we're only half way through.

Eden's Medical Fund

Saturday, June 27, 2015

Just doing the best I can

Over the past few weeks, I've been told by strangers and friends alike how proud they are of me for various reasons. It always strikes me as a little odd, though I do appreciate the accolades.

I take the boys to the library once a week for story time or to just get new books. We went once and attempted to listen to the brass instruments upstairs but that didn't end up working out. On the way down, we took the elevator (Eden was in the stroller) and two older women joined us. Asher was talking excitedly about books and Elijah was just shouting with excitement (he loves elevators). They commended me for taking three children out by myself and told me they were proud of me for that and for instilling a love of reading in my son. They have no idea that he's reading on probably a 2nd or 3rd grade level (an actual teacher told me this, I'm not just making stuff up.) Of course, as soon as we got off the elevator, the boys scattered and I had to chase them down, but what else do you expect from a 4.5 and a 2.5 year old? They are generally well behaved, but they're also kids.

During Eden's blessing and other times, people have told me how impressed they are with how I'm handling this whole terrible situation. I keep up with her appointments, with her dietary needs, with her oxygen and weight checks that we do every day and week at home. I look up her surgical options and medical procedures and her various heart defects online so I can have a little more understanding. I keep family and friends updated both through this blog and through one-on-one conversations.

The thing is....I don't feel like I'm doing anything special. If I don't go out by myself with all three kids, I'd never leave the house. I don't want to go to the grocery store in the evenings or on the weekends because they're crazy busy. Plus, that's our time with Austin so I'd rather spend it with him and not in the grocery store. Eden's my daughter, I need to take care of her so why wouldn't I keep track of everything?

I definitely could be handling everything worse. I could stay home and never go anywhere or only go out when Austin is home, but that would be doing myself and my children a disservice. They'll never learn how to behave in public if they never go into public. We don't take them to restaurants much but they do fairly well when we do. They won't learn to overcome any anxieties they may have about going out in public if they don't go and they may develop anxieties if they never go. They need to play with other kids in the park and go to the zoo and run in the water at the splash pad.

I could just put my head in the sand about Eden's condition. I could pretend she's perfectly fine since she shows no outward signs of illness. I could skip appointments or not track anything at home or just insist that she'll be ok, but that would not be in her best interest.

The flip side is I could be handling all this better. I could be planning out fun activities every day for the boys, taking them to the library every day and to the splash pad and movies and the park and indoor playgrounds all the time. I could set up activities in the backyard or inside and just try to run them ragged so they sleep soundly and early.

I could be a virtual expert on Eden's conditions. I could know exactly what happens in a heart catheter in infants, exactly what all the surgical options are, know what the odds of survival are, know what future surgeries she'll need and when. I could know more about her doctors.

But I don't. I have to balance their needs with my own. I'm exhausted. I've been getting sick off and on for five months because of  not enough sleep and not being able to take the right kind of meds because I'm breastfeeding/pumping. It is a chore to get all three kids and myself up and dressed and out the door for anything. That's why you see them wearing pajamas or the same shirt or pants two days in a row sometimes, or me with unwashed hair and dirty jeans. Sometimes, it's just not worth the battle to get a diaper bag packed and everything ready AND fight them into new clothes. Forget trying to shower. Sometimes I find weird stuff going on when I get out if I shower without another adult in the house. It's sometimes a miracle I get donut holes and all three kids to church on Sundays in time for church.

At the CALF, I ran into a friend I hadn't seen in a while and we got a chance to talk a little bit. I was explaining my understanding of the heart catheter procedure to her and she got emotional, thinking about such a small child going through that and she asked me how I don't just break down in tears over it. I told her that I don't get that teary over her catheter because what's coming is so much worse.

A heart catheter is a small tube and then camera run up through the femoral artery into her heart to get an inside look at it. There's dyes and ultrasound involved, but my understanding of the procedure is incomplete. I know that they'll put her to sleep for the procedure since she's so small and needs to stay absolutely still. That's scary.

What's worse is her heart surgery. They will put her under for that, too. They'll stop her heart and put her on a machine to keep her alive. They'll cut open her chest and crack open her sternum and physically open her heart (a heart the size of her tiny fist), cutting and suturing and opening and closing and installing and removing. For hours. HOURS. No one knows how many hours, but probably not less than 6-8. My tiny baby girl will be on a ventilator for a little while afterwards, she'll be in pain for who knows how long. She'll be in the pediatric ICU for at least a week. She'll spend another 4 to 6 weeks in a regular hospital room before we're released to the Ronald McDonald House for another week or so. I'm going to be gone from my sons for about two months. I have no idea how long she'll be in a position that I can't hold her. I have no idea how long she'll be on medication afterwards, maybe for life. I have no idea how big her scar will be, or how long things will take to heal. I don't want to know, really.

If I sat and really thought about her surgery and recovery, I would just cry all the time. I see this little girl who's smiling and happy and kicking and cooing and I can't imagine or stand the thought of her in pain. When she cries and I can't fix it, I cry because it'll be so much worse in the hospital. So I try to only think about the next thing, which is currently her heart catheter. We're watching her for now and we'll reevaluate her situation in September when she turns 8 months old, maybe sooner.  The absolute longest we'll go before surgery is likely 15 months, so next April.

So what I guess I'm trying to say is that while I appreciate people telling me they're proud of me and that they think I'm handling things really well, I don't necessarily feel like I've earned it. But...thank you for seeing what I'm doing and for acknowledging that its hard. I'm doing the best I can and I can't imagine doing less than that.

Eden's Medical Fund