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.