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

Monday, June 22, 2015

Good news, everyone!

I know, three updates in 5 days. It's madness! But when there's something to write about, it's more fun to update.

I got an email from our cardiologist, Dr. Sharma, last night and the CT surgeon (the doctor who'll do the catheter) wants to hold off on doing the catheter. Her saturation levels are so good (upper 80's, lower 90's) and haven't gotten any lower in the past three months they're comfortable waiting a few months. Yay!

This does put us back into the limbo state of "wait and see" but we're optimistic that it means her surgery will get pushed back to after her birthday, like was the original plan. She's doing so great these days, there's a part of me that wonders how long she could go like she is without a surgery. I know that surgical options increase her chances of needing a pacemaker (it's something between 50 and 70% currently) and later a heart transplant, but not doing anything would mean poorer quality of life and more illness.

I'm not sure what this will mean for the Synegus shots, either. We have an appointment in July for our regular cardio check up and we haven't gotten an appointment for the doppler yet, but we'll cross those bridges when we come to them. Part of me is relieved we get a little more time before hospital visits and part of me is ready to just do the procedures and just get it all over with (at least for the time being, of course).

Eden's Medical Fund

Just hangin' out with Mom. 

Sunday, June 21, 2015

Blessed Event

Walkes don't really do birthday parties. I only had one as a kid, the year I turned 7, and I remember it being pretty awesome, but that was it. Granted, my birthday was always within a week of Thanksgiving, so that made things tricky, but that one was all I had. A friend threw me one when I turned 17 and that was fun. There's so much expense and planning and preparation that goes into a party for a child who may not remember or care down the road. And I get it, for the babies, it's not about the kid, it's about the mom.

My mom's reasoning for not having annual birthday parties for us growing up was that she didn't want to make other parents have to buy as many presents for her kids as they did their own. We all had friends who had parties every year and we were always invited and we almost always went. By the time we were about 10, we were expected to buy or make the gifts ourselves. So we all grew up thinking annual birthday parties were kind of an odd thing.

Even as we grew up and started having other sorts of parties, they weren't "normal". My high school graduation party was a blessing party. The group of adults I'd grown up among, who were like extra parents for me, and my friends and family all gathered and blessed me before I headed off to college. The next year, my friends' families copied that. We Walkes like to bless our children and my parents write and wrote some pretty great ones. That has trickled down to my siblings and I and our writing blessings for our own children. We don't think a child can be TOO blessed, especially with all they have to deal with these days.

So what Austin and I have done, instead of a birthday party for our kids, is a blessing dinner. True, we did Asher's and Eden's when they were nearly five months old and Elijah's actually on his birthday, but there were reasons behind the timing. Asher, we wanted to celebrate this first child of ours. Eden, we want to bless her before she starts having surgical procedures. Elijah...we would have done it sooner but that was just a crazy time for us so his first birthday was the soonest we could get to it. Sorry, kid.

June 20 was Eden's blessing dinner. I didn't think picking the night before Father's Day would be so hard for so many people but it surprisingly was. We had about half of our invitees decline because they were going out of town for Father's Day. There are some very lucky fathers out there! We asked people not to bring gifts, just blessings for Eden. A lot of the people who couldn't attend sent in their blessings so we could put them in a book I make each time for the kids. We had a lovely time of laughing and crying and blessing and praying over our sweet girl. And she was just the sweetest, most patient child ever. She sat and listened and didn't fuss at all until after it was over, then she twisted around until her surrogate grandmother turned her so she could lean against Rosetta's chest and go to sleep and then she slept for probably an hour.

We had a room full of kids just playing and having a good time, three rooms full of adults enjoying dinner and each other's company, and a small baby who was the center of it all and rightly so.

Austin wrote his blessing earlier this week and after a mishap with the invitations, decided I should probably proofread it. Here's his blessing, posted with permission.

Bless you, Eden

Little girl, I know you won't remember this, but when you were a newborn, you seemed to prefer snuggling with me over Mommy. No, I have no proof, but Mommy knows even if she won't admit it.

If I was your favorite before, things changed quickly, because you smiled for everyone else before you cracked a smirk for me. It's hard to believe now because you always have a wide gummy smile for me whenever I pick you up.

Little girl, I know you weren't even aware you were doing it, but when your arteries decided to twist the wrong way while you were putting yourself together, you figured out how to make it work anyway. You are easily the greatest life-hacker I have ever met, and I am so proud to be your daddy.

We don't know how the next few months are going to play out, but we do know you have a huge support crew between your family, your extended family, your friends, your church, and the best team of doctors and nurses in the world. We hope someday you'll be able to look back on all these blessings and Mommy's blog and realize how truly special you are to all of us.

Little girl, whose name means paradise and "God is my oath", we have experienced the joy of paradise in your company these few months, and we promise to do everything we can to help you live a long and joyous life with us.

Bless you, Eden Elizabeth Mullins.

(It should be noted he did not pick Comic Sans, that's just the default since he picked a fancy font that's not available on blogger.) Not too shabby for not growing up in a "blessing" family! I've been sick for nearly two weeks now, so all my energy has been going into keeping kids alive and fed and getting the last minute plans and preparations taken care of for the party: shuttling tablecloths back and forth from Mom's to the woman who ironed them, getting the tablecloths ready for ironing in the first place, ordering cakes and flowers and food, deciding on food and purchasing and preparing it, getting out the real china dishes we used and the real silver and silverplate and stainless steel flatware we used, picking up at Mom's house, setting up tables, etc. I've been doing something for this party seemingly every day for a couple of weeks now, all while sick. Go me.

The blessing hadn't even started being formed in my head and then all of a sudden it was 11pm on Friday night and I was exhausted. I looked at Austin and sighed and said I was going to write my blessing. He said ok, he could proofread it if I needed. I said we'd see. Thirty minutes later this is what I had:

My beautiful, strong girl:

There will come a time in your life when you may wonder if you are loved, or wanted, or if anyone cares if you live or die. Typically this is during teenage years. I am here to tell you that you are loved, you were wanted, and we definitely care if you live or die. We are doing everything we can to make sure that when you die, you are an old woman who has lived a long, fulfilling life.

You have already showed a remarkable resilience for the hand you’ve been dealt. You have charmed every doctor, nurse, physician’s assistant, medical student, intern, resident, technician, and beyond that you’ve dealt with. Your sweet smile and easy going nature are going to come in handy for the future you have to deal with. I bless you that it is always so, that you always are pleasant and easy for the medical people to treat.

As you grow, I bless you with people who will support and love you, who will understand that you may not always be in the best mood, or feel wonderful. People who will be worth having in your life. Pick your friends carefully because they can either tear you down or build you up. I bless you with lifelong friends.

You have two older brothers who currently adore you. They love to touch your hands and legs and look into your face. Asher is constantly calling to you, curling up with you, watching over you like a good big brother and Elijah will come find me wherever I am to tell me if you’re crying, even if I’m standing right next to you. I bless you with a continued good relationship with your brothers. Your family are the people who will be with you your whole life through no matter what. They’re the ones who will help you move every time, who will house sit for you, who will babysit, who will always love you no matter how awful you might be. Family are the ones who get your jokes and who make you the butt of theirs, lovingly of course. I bless you that you and Asher and Elijah will always be there for each other, through thick and thin, doctor’s appointments and hospital stays, good and bad.

You were named after two of my favorite books, East of Eden by John Steinbeck, a book your father and I read together while we were dating long distance, and Pride and Prejudice by Jane Austen, a book I have enjoyed for many years. I bless you with a love of reading. Read all kinds of books: good ones, bad ones, silly ones, serious ones, long ones, short ones. If it interests you, read it.

I bless you with a love of knowledge. Find everything about topics that interest you and read as much as you can about them. Some people may call you a nerd, but that’s ok. If you love something, love it. In the words of Wil Wheaton, an actor who’s moderately popular right now:

“Being a nerd is awesome. Don’t let anyone tell you that a thing you love is a thing you can’t love. Don’t let anyone ever tell you that you can’t love that, that’s for boys…you find the things you love and you love them the most that you can.

“And listen: This is really important. I want you to be honest, honorable, kind. I want you to work hard, because anything worth doing is hard. And I want you to be awesome.”

Baby girl, I already think you’re awesome. Your entry into the world was awesome, your heart is awesome, your whole being is awesome. I know that you will continue to be awesome.

You have a difficult road ahead of you, my sweet girl. I bless you with strength. Physical, emotional, mental, strength of character, strong friends, strong opinions (which, let’s face it, you’re half Walke so that’s a given), strong personality (again, no brainer there).

I bless you with a sweet spirit and a calm nature. I bless you with love from friends and family. I bless you with patience and resilience. I bless you with understanding. I bless you with all the good things life has to offer and only a few of the bad. Based on what you’ve gone through so far, I hope you’ve already gotten your quotient of bad things.

I know we sometimes call you our princess, but I don’t want to give you that label. Princesses generally have the reputation of needing to be rescued, of being fragile and dainty and perhaps a little dumb and needy. I want you to be an Amazon. Be strong and confident and independent and smart. Be a warrior. And most of all, don’t forget to be awesome. 

Thank you to all our friends and family who came, who sent blessings, who pray for daily, and who love our girl. We think she's pretty special (not just because of her heart) and we love that you all do, too. 

And thank you to everyone who tells me that I'm doing a good job and that we're handling this well. Sometimes I don't feel like we are and I just want to throw in the towel, but parenting isn't something you can really opt out of, not easily anyway, so we have to keep plodding along through the muck and hard times. It means a lot to me that people see what we're doing and think we're doing the right thing. Parenting is hard! Support is always needed!

Fighting the snot and getting ready (don't worry, I washed my hands a lot)

Beautiful flowers!

Beautiful girl, sleeping well during the day

This is where Eden spent most of the evening. 

One of the tables. I was trying to get a picture of a baby, not texting at the dinner table. 

There were more people at this table at one point. lol

The hallway diners. 

The mayhem of the kids room was pretty great. 

Thursday, June 18, 2015

More of the Same

Eden had her cardiology appointment today and it was more of the same. Her weight is up to 5.75 kg, which is about 12#11, so really good. Her length is 23.5", so nice and long. Her oxygen rate was in the high 80's and her echo didn't show anything unusual. I could practically just copy/paste previous blogs every time we have a visit.

We talked a little more about her heart cath, since that'll be the next time we see the doctors. They'll sedate her so she doesn't move during the procedure and check everything out. Apparently one of the septal defects (I'm not sure if it was the atrial or vetricular) is kind of oddly shaped. Plus they want to get a better look at her pulmonary stenosis. There's a possibility they might use a balloon to open the stenosis a little to give her more time before needing the surgery, but they won't know until they're doing the catheter. The head of the cardiology department makes the final call on when we do the surgery. The doctor today couldn't give us any idea on a time frame (of course) but she did say that she thinks it'll be sooner rather than later.

Eden's feet were unusually cold, which I figure is probably because she was in nothing but a diaper for about an hour and a half but the doctor is concerned enough, she's since emailed me saying she wants to get a doppler of her lower extremities. There's not cardiac reason for her feet to be so cold, so she wants to check and see if there's anything going on we need to be aware of. We'll hopefully get a call from the nurse either tomorrow or early next week setting that up. (Sidenote, it's a good thing I don't have a job these days. Taking care of Eden's appointments is a full time job sometimes.)

She was smiling and cooing to all the personnel we saw today, much to their delight. She's so happy 99% of the time, I'm sure that's a welcome change from kids who are really sick and cry a lot. We figure it's because she had a bottle before we came, so she wasn't hungry at all while we were there.

I've got another sinus infection, making my third round of antibiotics in about 6.5 months. I talked to the PA today and she said everything about me seems fine, it's very likely that my body is just run down from breastfeeding and taking care of three children. I'm not resting like I should and even though I try, I know I'm not drinking enough water. My milk is drying up, though, so that has good and bad aspects to it.

Good means I'll probably start getting more sleep because I won't have the discomfort of full breasts and need to pump three times a day. Eden is doing very well on formula enriched breastmilk and the few bottles we give her of just formula she takes with no complaint, so the transition to formula should be seamless. Maybe now I can start losing some weight and get some cute clothes that fit me well and don't seem so enormous to me (I used to be a size small and am currently a large/extra large....I know there are plenty of women out there who are bigger or who would love to be my current size, but when I'm 40 pounds over what my "normal" was, I feel huge). We have about two weeks worth of breastmilk in the freezer that we can either save or use now, depending on our feelings. Austin and I decided we'd save it for after her surgery, provided it's sooner rather than later. If they push it back, we'll give it to her sooner so that she can get the benefits of it and we don't lose any.

Bad means Eden won't get as much milk as I hoped. I started out thinking "I'll go until I can't" and when it was going so well, I decided I wanted to make it through her surgery. I will be a little disappointed to stop at 5 months, but hey, 5 months is great. Some people don't do it at all, or can't do it for long, for whatever reason. Her doctor and mine were both impressed with my making it to 5 months given my breastfeeding history.

To try to help me stay healthier, the PA advised me to start taking Claritin once a day once I've stopped breastfeeding. It dries up milk (at least for me) so I may as well just start it now. Make the transition easier on my body. Once I don't feel like gum on the bottom of someone's shoe, I'll dig the Claritin we've got stashed and add it to my nightly dose of vitamins.

Everything else around here is going well. The boys are happy and healthy and we're having an ok summer. It's been more stressful on my body not having that second day of Mother's Day Out (hence the sinus infection) but we've tried to fill it with activities: going to the library for Story Time, going to the Splash Pad, play dates with other MOPS moms, movies at Century, playing in our own back yard. Something every day may be part of what's wearing me out, so we may scale back a bit (though I'm seriously not doing much because I'm so tired all the time). If we scale back and I get more rest and start taking the Claritin and STILL keep getting sick, I'll likely go see an ENT to see if there's something going on. So fingers crossed that doesn't happen.

That's all for now! Happy Father's Day to all the dads out there, and to you single moms, too. You being present in your child's life is priceless.

Eden's Medical Fund

Saturday, June 13, 2015


CALF, if you don't know, is the Children's Arts and Literacy Festival, held annually in Abilene (the newly named Storybook Capital of Texas, go us!) every second weekend of June. Or at least for the last four years. It's pretty great. Every year, they highlight a children's book author and illustrator and there are activities over a long weekend based around characters from that author's books.

The first year I didn't go, but I believe the author was Dr. Seuss. Because who doesn't love Seuss? After that was Walter Wick. Last year was the third year and the first we attended and the author was William Joyce. I'd never heard of him, in spite of his being actually a pretty well known author. He's got an Oscar under his belt (I believe) for a short film adaptation of one of his books, The Fantastic Flying Books of Mr. Morris Lessmore (if you haven't seen it get some tissues first). He wrote the Guardians books that the movie Rise of the Guardians was based on, among many other books. His style is gorgeous and I wish I hadn't been only 8 weeks pregnant because I was so miserable that a few people who I sort of knew through MOPS gave me smiles and waves and the most I could do was grimace in their direction. I didn't make any friends last year. Austin and his parents ended up taking the boys to things without me on Saturday after I put in a half hearted attempt on Friday.

This year, though, I was determined it was going to be different. The author was David Shannon and I'd never heard of him either, but that didn't really matter. We were ready to go to the readings and do some crafts and see the balloon artist and some movies.

We started Thursday night with the parade. We saw a few people we knew in character costumes and they were great, even more so when you realize that as 5 and 6 year olds, they put them together themselves with limited assistance from their parents. We went on to Everman Park to get started on the photo scavenger hunt, a new feature this year. We took about half of the pictures Thursday night since they were mostly to pose with some of the many storybook statues now populating downtown. Austin met up with us around 7 and we headed home shortly after to eat dinner and rest, since I'd made the mistake of wearing thin flip flops AND Eden. I was a hot, sweaty, achy mess.

Friday, we were up bright and early and the boys and I hit the ground running. We heard one dramatic reading of "No, David" and "Too Many Toys" and Elijah made a David puppet, which he's been waving at me this evening saying "No, David!" Then we went to another dramatic reading, this time of "Jangles." Asher decided to run off at this point and I nearly had a heart attack trying to find him. He'd found a back entrance to the awesomely decorated room and was amazing the women inside with his reading abilities. An awesome dad helped me try to find Asher when he saw me holding Eden and with Elijah in tow. He went downstairs and looked around for Asher and was relieved with me when we found him.

After that reading, we went to the Paramount to watch A Bug's Life and the boys LOVED it. For the most part. Elijah can just about eat his weight in popcorn and both boys were thirsty but kept spilling their water, dropping their cups, taking off their shoes, etc. We thought we lost a cup, but as the lights came up we found it. Then we realized we were missing some sunglasses.

After the movie, we hit the balloon man's show and the boys of course made themselves known by dumping out more water (seriously, take and toss cups don't last forever) and then getting up and trying to talk to the guy during his show. After that, we were pretty well done. They were getting whiney, but we still had a couple readings I wanted to hit before we ended.

We hit the library for "Bugs in My Hair" and then went to the NCCIL (National Center for Children's Illustrated Literature) and got a few books. I let the boys each pick one, then one for Eden, then I grabbed one I thought they'd enjoy. There was a reading there, but it was too long of a wait, so we went home. The boys were excited about their books so they laid down with them to read and ended up going to sleep for about three hours before Daddy got home and they went to see Frozen at Frontier Texas. Eden and I decided to stay in a/c and comfortable chairs so went to visit a friend for the evening.

Saturday, we had so few things to do we hadn't done, we slept in a little. We started off by turning in a survey about the event and getting an extra button for doing the photo scavenger hunt, then rode the train around Everman Park. These boys love trains, so that was basically the highlight of the day. After that was "A Bad Case of Stripes" with another craft, a Camilla Cream (the main character) mask and then a trolley ride to Frontier Texas to climb on the giant cow skull and look at the animals in the petting zoo before hearing "Duck on a Bike." The boys were getting antsy at this point, and we had all our buttons, so we were debating just calling it a day. We decided to get lunch and see what happened next.

After lunch, we had a second wind, so we went to a brief part of the magician's show at the Paramount, decorated cookies at McKay's, and went to the final reading, "How I Became a Pirate." After that, we were done. All that was left was a return visit in a couple hours to watch Wall-E at the Paramount and munch more popcorn.

Along the way, we took lots of pictures for the scavenger hunt and I have no idea how to get them to myself. I didn't notice the "upload to facebook" option when we were taking them and apparently, you can't go back and do it later. I'm emailing with their customer support people in hopes we can get them, since I can see them on my phone but not save them. I'm skeptical, though. In the end, though, we came in 11th! Not too shabby. The number 1 team was only 70 points ahead of us, so I feel like we really did well. There were 30 missions to complete and we did them all. I doubt we'll win the "creative" prize, but I had fun with it, which is nice since so much of the stuff is really aimed at children. The best part is, a lot of the missions will be available permanently for people who want to do a photo scavenger hunt around town. This is the kind of thing I really enjoy, so I hope they come up with more for Abilene.

As tired as the boys are, they're still laughing and playing at 9pm on Saturday night. Eden's curled up in her crib, talking to herself, and Austin and I are resting. It's a lot of work to push kids around in strollers and keep track of stuff and remember where and when things are. I had a low fever Friday morning and almost no voice on Saturday, so I'm worn out. I have a lot to do this coming week, so we'll see how I'm faring next weekend. lol

All in all, though, CALF was great. We all had fun and I hope this is a tradition our family can continue for years to come. It's not too expensive and it's such a great thing our city does. Kids of all ages were having fun all over downtown. There's more activities than I wrote about because we didn't do all the craft projects or activities just because Asher and Elijah aren't quite old enough to want to. They like books and stories and movies and trains. Hopefully Eden's a fan, too. Otherwise, she's going to feel very out of place in our family.

If you haven't been to CALF, you should definitely consider it next year. The author is Mark Teague, another one I've never heard of, but I'm sure he'll be great, too. I kind of like discovering the author's books during the festival, so we'll probably continue that tradition.

As a side note, the people at the festival were awesome. All the volunteers were friendly and helpful, especially to the legion of parents pushing kids in strollers. I made eye contact with several moms with kids in full on melt down mode and smiled and said more than once "My kids are just like that. Don't worry about it." We helped each other look for lost cups and sunglasses and shoes and lanyards (your ticket into everything). Sometimes even lost kids. We helped each other get strollers on and off of the trolley and kids in and out of events. We watched each other's kids so we could go to the bathroom or to get concessions at the movies or to get food at the restaurants. We took pictures of each other so that mom got to be in the picture instead of behind the camera. Abilene really is a great place to raise a family these days. Maybe it always was, but when I was a kid, I really didn't like growing up here. I'm so glad that it's becoming more family friendly with new activities and events and parks.

Eden's Medical Fund

Monday, June 8, 2015


Again, no updates is kind of a good thing.

Eden is doing well still. She's gaining weight once we figured out she was ready for 6 ounce bottles. She now has three 6-oz bottles a day, plus nursing, with an extra bottle of usually straight formula when she wants it. Because of this increase in her intake, her weight went up a lot. She weighed around 11# even on May 21, and that's when they told us to increase her to three bottles a day. By the next Tuesday, May 26, she'd gained 3 ounces. Not bad, but not just fantastic. By the next Thursday, May 28, she had put on another 2 ounces, so five total from the previous week. The next day we started giving her 6 ounce bottles and by June 4, she was up to 11#13 ounces. Eight ounces in seven days is pretty awesome! We're hoping she'll keep up this gain for a little while and will hit 14 pounds by her 6 month birthday. That's about six weeks and two pounds away, so it's definitely doable. I hope.

We're working on getting the local pediatric ophthalmologist pre-approved to see Eden for her droopy eyelid (ptosis). I should have called as soon as I got the paperwork but I had a few things going on that day and then it was the weekend so by the time I finally did, it was just over two weeks before the appointment and the approval process can take up to two weeks. So fingers crossed that it goes through in time. The closest pediatric ophthalmologist who is on our insurance is in Ft. Worth, 133 miles away, so our odds are good. If they can't get her approved, we'll probably see about seeing someone in Dallas while we're there later this year.

While getting that started, I realized that I needed to get a list of everyone for the heart cath and the surgery, or as comprehensive a list as possible, and make sure they're all covered on our insurance and if not, start getting them pre-approved. I looked up all the doctors I could remember seeing at Children's and they were all covered under BCBS, so I'm hopeful that we're going to be ok on that front when surgery time comes.

Saturday we helped a family member move and it was hot, sweaty, exhausting work. We got a babysitter to keep all the young kids and they seem to have had a blast. They played in the paddling pool, watched movies, played with toys inside and outside, ate lunch, and my boys were asleep pretty early Saturday night. Sunday I was exhausted and slept several hours after church and could have slept more if not for breastfeeding needs. Eden definitely missed me after seven hours away from me on Saturday, and I missed her, so after dinner, while I was trying to stay awake just a little longer to pump, I cuddled up with her in bed and Asher read us a couple of stories out of his Berenstain Bears book. She nursed for comfort, then snuggled in and went to sleep against me. I almost kept her in the bed with me, but decided I needed more restful sleep than that, so I put her in the crib and went to sleep. She was snuggly and clingy yesterday too, but seems to be back to her normal semi-independent self today. Which is good since the dehydration and exhaustion of the last couple of days caught up with me and I'm a little physically ill. Nothing major, just something that'll pass in a day or two.

Eljiah was snuggly today, though, so he cuddled up with me in bed while we watched Bill Nye this morning and fell asleep with me. Maybe sleeping while hearing about climates will help him learn stuff.

So now, Asher is watching a dvd (which is really just him skipping through to watch his favorite parts), Elijah and Eden are napping, and I've had lunch and I'm thinking about napping myself. Feta's making a pretty good argument for it with her kitty nap next to me.

Eden's Medical Fund