Damian Update

If you saw the Instagram post from yesterday, you know Little Man has been having some issues. I hope to keep you updated so you can continue to pray for him. 

A little background... 

Damian has Biliary Atresia--a rare liver disease in which the bile ducts going from the liver to the intestines disintegrate. He was diagnosed at 2 weeks of age and at 3 weeks had a surgery known as a Kasai Procedure in which they take part of his intestines and make a new duct for bile to drain through. Praise God Damian's liver seems to have responded well to this surgery. Every 6 months his liver levels are monitored and they have always been relatively stable. We hope this means a liver transplant can wait a nice long long long time from now. However, I've been given a short list of things to keep an eye on as they could be signs of complications that can arise when one has a compromised liver. These things include a sudden, unexplained fever (from a potential bout of cholangitis,) blood in stool, spitting up or coughing up blood (from potentially bleeding varices caused by portal hypertension,) etc.

So what's been happening... 

Yesterday Damian began experiencing "some bathroom issues" with what appeared to be a decent amount of blood in it. I knew this was a sign of bleeding varices so I immediately called our pediatrician, and he got us to come in right away.

Crazy kid is just happy to have a lollipop

He confirmed it was definitely blood, and we spent the rest of the morning and early afternoon trying to figure out what the GI Team at the local children's hospital would like for us to do. I kept saying if I don't have a "plan" by 3pm I'm taking him to the ER because I know that early intervention is key as far as limiting the damage done to his liver, and I was starting to get a little mama bear crazy.

Thanks wifey for finding something that accurately depicted my mood

Normally I do a decent job keeping my whits about me when stuff happens with Damian, but we had still not been able to get into see the new GI/Liver Team here since moving back in February (that's another frustrating story for another day) and I didn't feel like I could "trust" these doctors yet. 

Anyway, a little before 3 o'clock I hear from the GI team and they would like to see him at 8 am the next day (today.) I questioned whether or not he should be seen sooner and they made it seem like it was up to me as to whether or not to take him to the ER. (Mama Bear be annoyed at this point.) So I promptly called our old GI who recommended we take him in, if he had another "episode with blood in it." Thankfully Damian didn't and we went to the GI today. The doctor explained that while it could be varices, Damian would likely also be spitting up blood as well since varices tend to bleed a lot. Also his liver and spleen felt fine, so he's hoping that's not what's causing it. We did blood work today, and the results should tell us (based on his cell counts) how profuse the bleeding is. If it is profuse (or the episodes continue,) then we will be scheduled for an emergency scope to determine the source of the bleeding. If his numbers come back fine, we will schedule him some time in the first week July to have the scope done. 

The doctor is speculating that it may be hemorrhoids that formed at the site of the new bile duct created during the Kasai Procedure or something else going on in the large intestines. Neither are life threatening, but both would require a minimally invasive surgery to correct. Or (although I find this unlikely judging by the fact Damian is acting like he feels fine) he's having a bacterial infection of some sort. 

So if you could, please keep him in your prayers that it's only something minor, and that it's an easy fix! As of tonight, we haven't heard back about blood work so I will keep you posted once we hear something hopefully tomorrow. 

Thanks again for all the kind texts, comments, etc. We really appreciate them!

7 Quick Takes

Normally when I do these post I go through my phone and look at all the pictures from the week to remember what seven things I should quickly tell you about. This week the pictures have been nothing short of random... 

1.

Two nights ago, a family member drove by our old house in Atlanta and sent us a picture of our once pink house. It is now a very TEAL teal. This caused me a large amount of sadness as that was OUR HOUSE! It's supposed to be PINK! I'll never see it PINK again! EtcEtc. And so of course we all took a trip down memory lane and google street viewed it. And then realized that I AM STANDING OUTSIDE THE HOUSE ON GOOGLE STREET VIEW!!!!???!!!?! Creepy.

2.

Sorry for all the yelling of the last take, I'll try to take it down a notch with Clare sleeping in her crib. Oh her hair!

3.

I hate cleaning our shower, which if you look at it, is very apparent. However, I saw this in Target the other day. I want it. Anyone have it? Is it as wonderful as it seems?

4.

I checked a bunch of books out from the library, one of which was about homesteading. At the end, it had this gem... Anyone want to start an Intentional Community with me? I will provide the bandannas.

5.

Nate wanted me to take a hipster foodie pic of Damian's 5-star dinner the other night because it looked so...spectacular... I never got around to editting it. If you are wondering, he ate approximately -1 bites of it.

6.

We made more laundry soap, and surprisingly no one got a shot of Borax to the eye--even with Damian whisking.

7.

I have nothing else for this last one here, other than to say thanks for coming by the blog. I really appreciate all of you readers and followers. Thanks to all the sweet comments, texts, and emails from my last post. Those really meant a lot to me! If you haven't left a comment before, I would love to know you read and introduce yourself--especially if you have a blog. Thanks to the Bloglovin' app, and Clare's love of snuggling, I'm back on the old blog reading horse!

Linking up with Jen

A Letter to My Daughter

Dearest Daughter,

This letter is for when you are older, but I don't want it to come too late so I'm writing it to you now. 

I want you to know a few thing about your mom. 

When we heard "It's a girl!" I could barely contain my excitement. I'd finally get to do all those girly things like bows and ruffles and dolls. Your grandmother is my best friend and I had always hoped that one day I would have a daughter to share that relationship with as well. And as we continued to prepare for your arrival, my excitement still grew but I began to realize more and more what having a daughter, especially in these times, would mean. You see, the world is a tricky place. As a woman, you are lucky to live in a time where you can do and be whatever you want. A mother, a doctor, a teacher, a politician? Go for it! I hope you find your passion early and give it your best shot. However, there's a darker side of this world in which we live. One where sin prevails and a woman is objectified and misused with little thought to her as a whole person. Just walk down any magazine aisle and read the headlines. It's all about how you look, how sexy you are, what you can offer to your man. And while I may tell you your worth is so much more than that, I know the world loudly shouts something else. 

And then Sweet One, I had you and watched you start to grow. You are absolutely beautiful to me. No really, you are stunning. And the more I thought about how the world might make you feel otherwise, the more angry I became. Not at the world, love, but at myself. For women are the ones that have allowed this to happen. We were the ones that bought that lie. We're the ones that kill ourselves trying to look a certain way, complain about our worst features, and dream about what it must be like to be just one size smaller or one inch taller or just a little bit curvier. 

So I began to think about how maybe I could save you from all the pain so many women go through. I could keep you in a bubble, never exposing you to the world, but there's so much good out there I want you to see too. Maybe I could try my hardest to protect you from bad influences and just never let you out of my sight. But then how would you learn to be independent or grow from mistakes? I don't want to save you from every fall or broken heart. It was then I had the scary realization, that all parents do at some point, that I can't control your life forever and at some point I will have to let you go. All I can do is give you the tools to survive. 

But I don't want you to merely survive, I want you to thrive. There must be a better way for a woman to live than constantly obsessing about how she looks. But isn't that what we women do?  Why is that? Where do we learn that from? It must be from other women. When I came to that conclusion, I decided that I would try with all my might to teach you something different. I can't control the world, but I can control me. Maybe, just maybe, my influence would be enough to give you the strength to not buy into the image obsessed culture in which we live.

My words will never be louder than the culture's, but I hope my actions are. So I want you to know...

When you see me running and working out, it's not so I can fit into size 0 jeans or have a bikini body. It's because I love fresh air, the feel of working for something hard, and I want to be good to this body God has given me. I do it so I will be around for your children, and God-willing, your children's children. 

When you see me eating a salad or choosing a healthy food option, don't think it's because I'm deathly afraid of cellulite or gaining a few pounds. Know it's because eating the natural things of this earth remind me of how blessed we are to be able to have good food that nourishes our bodies.

When I put on make up, please don't ever think I don't like the way I look without it. Just as I like nice clothing that flatters my body, I enjoy having fun with make up. But if I ever thought it made you think you needed it to be pretty, I would throw it all away in a heartbeat and never wear it again.

And when you hear me talk about myself, I hope you never hear me complain about the way I look. How could I not like so many of my features that I see look so beautiful on you?

I hope you learn to value looking beautiful rather than "looking hot." I want you to enjoy good chocolate and a fine wine while knowing moderation and temperance. I want you to know the virtues because you were raised surrounded by them. I want you to know you are loved. I want you to know who you are and what you stand for and to never waiver in either of those. I hope that if I can teach you only one thing about being a woman, it's to see yourself as God sees you and to be grateful for this body of yours. 

I love you my beautiful girl,

Mom

7 months...

Dear Clare,

7 months... Per the norm, this past month was a lot of fun! You've done so many new things, and I'm starting to worry my days with a "baby" are number as you race full steam ahead to toddlerhood. I blame Damian (as we usually do when you start to cry) because you are sooo intent on keeping up with him. I understand, he is a lot of fun. But darling, I don't know that your mama is ready for it all. Let's just go ahead and recap this month shall we. This month...

You started crawling! Woot woot! You are on the move and go go go go. After the second day of you crawling around, Damian finally noticed (typical male) and asked "Mama, what is Clare doing?" I said "She's crawling!" to which he responded "No, she's too little to crawl." My thoughts exactly.....

And now that you are crawling, you are pulling up on anything and everything you can get to. It's caused a lot of falls and boo-boos for you. You've probably cried more since crawling than you have since being born. However, you are also pretty good about rolling with the punches and getting back at it after a fall.

Because you can pull up on everything, you also want to walk. You love walking around holding on to our fingers and you take the cutest GIANT baby steps. You've started cruising some on the sofa, and even think it's fun to let go occasionally and see how long you can stand (only a few seconds.)

We went to the doctor last Wednesday, and you weighed in at 20 pounds 1 oz. and 28.75 inches long. You're off the charts for your height; both Daddy and I are tall, so that's not too surprising. He was very happy with all your development and couldn't believe how well you were doing. It was a proud mama moment, even though I know I have nothing to do with it. You're a motivated little girl.

Sleeping... Well girlfriend... It's still pretty inconsistent. We tried for a few weeks to not let you in the bed with us but you kept us up all night (even Damian) and after weeks of no one sleeping, I just gave up. You are definitely teaching me that every baby has different needs... So now you go down around 7 and sleep for a few hours, wake up and I feed you, you sleep until somewhere between 12-2 and then come to bed with us. I'm working on night weaning you in an effort to convince you that mama isn't the only place you can sleep. On a positive note, you have gotten a bit better about naps though and that's been really nice. Usually I can get 1-2 naps in the crib each day, and they can be anywhere from 15 minutes to over 2 hours. So while sleep overall is still not what I would love (you and Damian sleeping in your own beds for 12+ hours every night and napping for hours during the day) when I look at where we've come from since you were born, we are still progressing.

You love to talk and babble. You will say DaDa if we ask you to, and if I ask you to say MaMa you say BahBah which, considering you don't take bottles, is kinda appropriate for me... sigh... I guess that's just how you see me-- a giant bottle.

I bought you some 2nd Foods baby food and you like those much better than First Foods so you will let me feed you as long as you have something you can feed yourself. Therefore most "meals" include a squeeze pouch and finger foods.

You make some of the best faces. When you laugh, cry, or make your "I'm full" face your eyes completely disappear and you become all cheeks and mouth. You still only have your two bottom teeth, but I can see little swollen spots so I think the top ones will be coming in soon. I bought you an amber teething necklace so we will see if that helps.

Now that you are crawling I'm starting to notice that you are understand words/commands. You respond to your name and usually will come to us when we ask you to. It's always fun to realize when babies actually understand much more than you think they do. I'm also able to see what are your favorite toys, which are usually the 'not actual toys' (i.e. shoes, my purse, wipes) and then of course any lego project Damian is working on. I see a lots of fighting in the future over toys. Can't wait...

You hate hate hate diaper and clothing changes. I think you would much rather be my naked baby.

Well, that's about all for now! I'm looking forward to another month with you cuddle bug.

Love you!!

Mama

Family, Sabbath, #SundayFunday

When we first moved into the house, our weekends were jammed pack trying to unpack, organize, and accomplish all our home improvement projects. Nate and I tried to use our time wisely and get as much done as possible since I was useless during the week with the littles. And by the time Nate got home from work, it was bedtime. Power tools + bedtime does not work in this house. Thus the weekend became GET IT ALL DONE NOW time. 

That worked for awhile, until I began to realize it wasn't actually working for all of us. Damian, poor kid, wasn't getting to enjoy his weekends with his family. Sure Nate and I were there, but being there versus being present are very different things. He can only go to Lowes so many times... And watching us paint while watching Mary Poppins for the umpteenth time isn't exactly as exciting as it was the first 3498 times. So I decided we needed a change...

For awhile now I've wanted to be better about keeping Sunday the Sabbath and minimizing the "just another day" aspect of it. Of course we go to Mass so that helps, but other than that, there's not been much different. Awhile back when I was reading St. Therese of Lisieux's Story of a Soul, I was struck by how she described the Sundays of her childhood as little tastes of heaven. And I want that, more than anything, for my kids. So in a more modern hashtag-y kind of way, we started Sunday Funday. 

We don't always do some big, but we try to do at least something fun as a family on Sunday. Sometimes it's just going to a park or for a walk, other times we'll go to the beach or get a meal. Whatever it is, we try to do it together and make sure it's something we can all enjoy at some level. Even the babe. 

Today we just walked around our beautiful city 

and enjoyed the cool breeze coming off the harbor. If anything reminds me of what I hope heaven is like, it's walking around on a beautiful day near the water. It was nice to just laugh at Damian being a nut, 

talk with Nate,

and watch Clare try to play with her brother. It's good to take it slow sometimes. The dishes and laundry aren't going anywhere, and on Sundays, they can wait.

7 Quick Takes--Our trip to Philadelphia

1.

We left Saturday for Philadelphia. It was Clare's first plane ride, and I was hoping she would do as well as her brother did on flights. The trip was for my brother-in-law's graduation from Penn. We decided since it would be a lot of walking and a lot of sitting at ceremonies, dinners, and such it would be best for Damian to stay with my parents. I don't think he minded one bit considering all I heard was on their agenda for the few days we would be gone.

2.

Clare did great on the flight there. She acted a little loopy at first, but I finally got her to settle down and sleep. Everyone said she was the quietest baby they had ever experienced on a flight, so I guess she didn't bother anyone.

3.

I had never been to Philadelphia so I was excited to see a new city.

Clare loved the fact that we got to have a king sized bed "all for her."

4.

Before we left I wasn't sure which carrier for Clare to bring... I know... I don't know how I handle all my problems either. Anyway, I have a Maya Wrap ring sling and a Boba. The Boba would have been easier to carry her around walking-wise, and she's starting to like back carries. However, I really hate using it to nurse and since I knew the chances of having quiet places to nurse would be limited, I went with the Maya. I'm glad I did because she really likes sitting on my hip so she can see as we walk, and I was right, I was often feeding her on the go. 

5.

Graduation was much different from ours at Furman. Definitely much bigger, and the commencement speaker was John Legend. Afterwards Nate and I thought and thought about who spoke at ours and we could never remember. I guess that's what happens when our entire school was smaller than Penn's graduating class.

After the ceremony, we went to lunch that turned into dinner after hours of eating and celebrating. SO much yummy food! Clare slept in my arms for a good majority of it, so I got to enjoy most of my meal without fighting little hands for all my food.

6.

The flight home was also good. She slept and ate mum mums. I think we were all exhausted from all the walking and fun we had had in Philly. 

7.

We then came home to Damian who is our high energy little man. It was fun having a chance to get to know Clare without Damian constantly "telling her how it is" but I was so glad to have our little family back together. It's not quite the same without D... It's too quiet... and perhaps too easy ;-)

Linking up with Jen

A Day in the Life

7:30

 

Wake up to Clare patting my face. I attempt to nurse her in hopes I can get a few more minutes of sleep, but she continues to be adorable. and awake.

7:33 

Hear Damian whining downstairs to Nate about something. Pray I can hide just a bit longer

7:44

 Damian finds me, and he's crying. 

I continue to ask him why, and he continues to ignore me. Finally he calms down and tries to tackle me and Clare. Family snuggle fest commences.

7:58 

Nate makes it upstairs to get ready for work. He gives me that "you're still in bed" look because he's been up for hours at this point. We chat about the morning before he sneaks in the shower. 

8:15 

Realize Damian not only has my phone but he's managed to pull up a random video online. We all get sucked in watching it, and Damian doesn't get the humor. 

8:20 

Finally I get up... Let the day begin, world. I moan and whine a bit.

8:24 

Now begins the fight for my phone. Damian repeatedly tells me it's his and finally pry it out of his hands. Tears... sooo many tears.

8:26 

Nate says goodbye and for some reason Damian was not satisfied by the farewell he's received.

8:30 

Chase Nate down in the driveway because Damian is in hysterics and saying that he needs another hug from Nate. Normally I don't cater to every whim this kid has, but he's never acted this way about Nate leaving before so I deem it kinda cute and try to stop Nate from driving away. Of course, he still cries when Nate leaves, so I carry him and Clare back into the house. Work out for the day--completed.

8:40 

 

Despite the fact that she now hates diaper changes because it means she can't go anywhere, she finally has a clean diaper on. 

8:42

Everyone is unraveling again about who knows what, so I decide we need to get out of the house STAT.

8:43 

Get me and Clare dressed. 

8:58 

My timer goes off?? For some reason Damian must have set that while playing with my phone earlier... sigh...

9:03

 Wrangle clothing on to scooter boy, although I have to wait until he's done taking his call

 and head to the car.

9:13 

Yes a whopping 10 minutes later we are all finally in the car and on the way to Whole Foods. Clare naps.

9:30

 Make it into WF thanks to bribery. Head straight to coffee and pastry section and load us up. 

Damian's diet has started off stellar and I just thank God that this chocolate croissant he chose is as big as his face because it means I will get to shop in peace.

9:40 

Damian starts yelling about something. WHAT ARE YOU TALKING ABOUT KID?!?!?! Finally realize ooohhhh Bees. Like actual buzz buzz sting bees. Right.... 

9:42 

Go look at bees.

9:50

 Still walking around WF trying to find bread crumbs. WHERE ARE THE BREAD CRUMBS?!?!?! Finally ask someone and she says "Oh, they're over here by the tuna." I give her the "Oh. Logically." face, grab some, and bolt to the check out because there is still way too much Ice Coffee in my cup and not enough chocolate croissant left in his pastry bag. 

10:00

 Make it to the car and let Damian help me push the cart back to the drop-off spot. He insist he must also throw away his pastry bag because, judging by the tone of his voice, his life depends on it.

10:14 

Time to go home. Talk to my mom on the drive back. Adult conversation. Woot Woot. Clare sleeps and Damian is surprisingly quiet-ish.

10:45 

Car is unloaded, and Clare is asleep in her carseat. I get to actually cook some!!! 

10:46

 Damian wakes up Clare.

10:47 

Stop myself from killing my child.

10:48 

Start to really regret the fact that I didn't make this dish the night before like I had originally planned. 

10:53 

Clare lets me finally put her down, and Damian is scooting around the house playing. She slowly dismantles the fridge and cabinets and I don't even care one little bit. 

I get to chop chop chop with two hands!

11:21
Everything is finally chopped after some "help" from Damian

 and a few intermissions from Clare. I realize that trying to triple a recipe was perhaps a bit ambitious... 

11:30 

Realize it's been 4 hours since I've nursed Clare, so we take a little nursing break. Wonder if 11:33 still counts as morning as I read my Morning Offering email.

 She falls asleep so I put her in he Ergo and keep on keeping on.

11:38 

Let Damian "wash dishes" because the environment isn't going to win today. 

11:50 

Recipe calls for wine and wonder if it's acceptable to drink wine before noon if I'm using it to cook.

11:51 

Curse the wine gods.

12:00 

Damian is playing by himself. Praise the real God for this miracle that last until lunchtime. At some point I notice that playing by himself also means hanging out in the dog crate.

12:50 

Casseroles are in the oven and I've got lunch on the table for Damian. I eat cashews because I have to fix this... It's just... yea it's bad.

1:29 

Kitchen is clean enough.

1:41

 Put on George and sit down for a second. Clare doesn't want to play and seems pretty cranky.

1:50 

Nurse Clare while wondering what Tibi is barking about while also making oatmeal for me to eat.

1:55

Eat oatmeal while nursing Clare and attempting to blog. I get no where because she wants to help type.

2:03 

Go upstairs to grab laundry and to change. Clare falls over pulling up on something and wants to comfort nurse. Damian notices we are missing and comes upstairs. I put Clare in the Johnny Jump-up so I can attempt to make myself look half way decent. She and Damian bounce while looking at each other in the mirror. I can't decide if this is incredibly cute or just kinda vain. Gotta love little kids.

2:20 

Casseroles done! 

Start getting Damian and Clare ready to go. We're delivering a meal to a mama friend who just had a baby (hence all the casserole making.) Also remember I need to pack a few packages from the eBay business and stick them in the mailbox.

2:50

 Finally get out the door 30 minutes later. Clare sleeps and Damian is silent. This. Is. Bliss. I'm completely recharged by the time we get to her house.

3:23

 Make it to friend's house and end up having an impromptu playdate for a bit. Damian's shy self seems to be finally warming up a bit right as we need to leave. Typical typical. 

4:50

 We're back home and Damian wants to go on a walk. Also, judging by his tone, this too is life or death and if we don't walk RIGHT NOW we will all die. But I tell Mr. Doing the Potty Dance he has to go to the bathroom first. He and I argue for a good 5 minutes before he finally just goes. I will never understand this dilemma. Never. (Can I mention how glad I am that dinner is already done! I also make a mental note to start cooking every meal early.)

5:00 

Strap Clare in the Ergo, Damian grabs his scooter, and we finally go on that walk. I tell him he has until 5:30 because then we have to go home to warm up dinner and take a bath. 

5:25

 Run into/meet our neighbor who has kids and end up talking for WAY too long. But we get a dinner invite out of it. Damian has had one too many interactions with humans and is losing it. The world is crumbling around us. We are all hot. We are all melting. There are puddles of despair everywhere. I'm fairly convinced the dinner invite has been revoked. But new friends bring Damian a frozen yogurt pop to help us make it back home. They are officially amazing.

6:03 

Finally start warming up dinner. Damian struggles. Clare is a sweaty mess and hungry.

6:08 

The moment we have all been waiting for finally happens as Nate walks through the door. Hallelujah choirs begin. Or, wait, is that the sound of my child still. wailing. 

6:10

 Dinner begins. After an epic battle over what he was eating, he decides that he suddenly doesn't like THESE chicken nuggets. He wants to go get different ones. I sip my wine faster. Finally we bribe him with milk to eat and he realizes, oh wait. THESE ARE SOOOO GOOD! Sigh.... We recount the day to Nate, while I feed Miss I Love To Eat So Much I That Bounce While I Eat And Therefore Make A Mess. Thankfully, the day seems to be ending on a happy note as everyone's mood is much better with a little food.

7:10

 Go upstairs and begin the bedtime routine with Clare while Nate tackles (literally) Damian. Rock and nurse Clare while I pray and decompress from the day.

7:50 

Sneak out of Clare's room. Catch up briefly with Nate while he cleans the kitchen from dinner. I then go outside to water the plants.

8:24 

Decide I just need some quiet time and swing outside for a bit. I worry about Damian some and hope I'm doing the right thing with him. 

8:36

 Go back inside and apologize to Nate for unloading all my frustrations about Damian and his "social skills" on to Nate the second he walked in the door. He, of course, doesn't care because he understands. 

8:40

 Start blogging.

9:06 

Realize the number of pictures I have for this post is unreal.

9:32 

Start texting all the people I've accidentally ignored in the last few hours. 

10:10

Finish post. Contemplate bed or ice cream. Bed or ice cream. And then think... Oh wait, didn't I do laundry at some point today?? Oops...