Second opinion and the Waiting game..

This past week, we have been home and enjoying our family time. I have felt surprisingly "high" and I go days without crying. I can tell everyone is praying for us. Overall, we have felt incredibly lifted.

We have spent a lot of time outside, since it has been absolutely beautiful. The only problem is, I treat my poor Vivi like she is made of glass.

I don't let her go down our slide anymore. She went down funny one time and it seemed like it sent pain through her body. No more slide, Vivi and forget about going to the park. You have a tumor.

Vivian has watched her older sister (by 13 months) do gymnastics. Until I found out she has a tumor, we would practice at home. We would do somersaults, stretch and do cartwheels. No more, Vivian. You have a tumor.

I typically have my kids eat pretty healthy. They actually eat veggies and fruits better then processed food (Don't get me wrong, we frequent chick-fil-a). But since Easter, Vivi has been requesting her "Easter candy" morning, noon and night. Whatever you want, Vivi.. you have a tumor.

My kid wasn't sick until someone told me my kid was sick. Now, when my baby cries.. I wonder if she has pain? tingling? Is she getting ready to puke? Is she scared? Or is she just throwing a fit because she is TWO?!


This week was a huge waiting game. I spent a lot of time on the phone trying to coordinate with Cincinnati Childrens. We reached out to multiple resources to see who the best to work on my kid is. And lucky for us, we had 2 physicians and 1 neurosurgery nurse practitioner all separately recommend the SAME guy, How much peach of mind is that?! One of my biggest worries throughout this process has been making the "wrong" decision and blaming myself when everything is said and done if something goes wrong. Because Jake and I put a lot of effort into finding "our guy".. I can't look back. I can't go to that dark place and blame myself. I did the research and I won't let myself take on the guilt. Well, I'll do my best!

We finally got into Cincinnati Childrens with "my guy". My primary care physician was a huge advocate for it. She was incredible throughout the process. She always is.

Today, we met with the neurosurgeon. His version of the surgery was very.. different. 1 neurosurgeon in the room (him) and a resident or fellow. He believes it will only take 6-8 hours. The previous surgeon almost double that time and was going to use 3 neurosurgeons. The hospital time is less. Risks are the same. Since my daughter is so young, and has a very extensive tumor that will require a laminectomy involving 14 vertebrae, she has a very high risk of deformity. Her spine may not be able to support her. The previous neurosurgeon was going to monitor her closely and possibly put her in a back brace if she starts slouching. This neurosurgeon is automatically putting her in a back brace for 3-6 months. If she slouches with the brace, she may require a fusion of her spine. He wants to avoid that because, obviously.. extra back surgery stinks. But also because she will always need to be monitored for recurrence of a tumor and the hardware they would have to place for the fusion would make her MRI difficult to read.

It also sounds like her hospital stay will be less and she can go to inpatient rehab at Cincy Childrens. I love that!!!

Overall, the surgery sounds better. I hate the idea of my kid being on the table alllllllllll day. 8 hours sounds like nothing compared to 13-17 hours. However, this surgeon basically said her surgery is about as complicated as it gets. Ugh. And it's very likely my baby will need chemo. Double Ugh. The only tumor that won't require chemo is a glioma stage 1. Whatever tumor causes the least difficulties with my baby long term, is the one I want. If she requires chemo, but that helps keep it away.. so be it. She wouldn't start until a couple weeks after. The chemo would break down her scar tissue which would make her back difficult to heal. So, we would wait. And maybe I misunderstood the previous neurosurgeon? But we won't know for a week if her tumor is malignant or benign. Ahhh.. I thought I would know the day of surgery. More waiting. Hopefully we can do surgery May 11. She has to be off ibuprofen for 2 weeks and on steroids.

Tomorrow, we go BACK to Cincy Childrens. I guess I need to get used to it. We will get her bladder checked. She is not potty trained and because the tumor is so low, we are unsure if her bladder functions properly. Not that the surgery will fix that if it doesn't function right.. but.. at least we will know prior. Really, I think it's to cover the surgeon's ass.. if she doesn't properly function, he wants to know before surgery so he can't say "I caused that". It's a long day for my girl though. It's not a fun day of testing, that's for sure.

I have been very strong this week. Today was a low for me. It's hard to talk about my daughter being anything but perfectly healthy. It's hard to hear the word "complicated". It's hard to envision my perfectly perfect girl in a back brace. It's hard to think about a bladder not functioning. It was hard to see her get MORE blood work. I hate it all. I just want to look at my kid and see my kid.. and not her stupid effing tumor glaring at me. I've been good, until today. Tomorrow will be better. Okay, maybe not tomorrow since she has a long day of testing.. Saturday will be better. :-)

We appreciate everyone lifting us up SO much. We feel it. My girls feel it. Vivian asked me tonight if I was sad "And I said NO, I am SO happy. Are you sad?" Vivi said "No! I happy! I laughing! Brynny happy, too. Aubrey happy, too. Daddy happy, too!". We are happy. All my people. We've got this!!!

"It's a tumor"

1 week ago today, my entire world was rocked. 

My sweet Vivian has been acting off since the beginning of March. In the middle of the night should would scream blood curdling screams, but when you would run in to see what was wrong.. she would just sweetly ask for more milk. She had been sleeping through the night for.. forever.. so it was a change.. but not a red flag at the time. She began screaming when we would lay her down to change her diaper. She would tense up like it hurt.. but there was nothing I could see and she would be just fine after I was done. I mentioned it to her doctor. We decided it was just about time to start potty training and it was likely more of a behavior thing. At the beginning of April, she began itching at her chest. I never saw a rash, but she had even opened up her chest scratching at it. It happened to be at the same time I changed laundry detergents so we put hydrocortisone cream and gave her a little benadryl and went on our way. 

But the red flag that we finally listened to was on Sunday, April 9th. It was GORGEOUS that day and we were outside playing. Vivian was walking away from me and I called her name.. she turned around with her entire body, obviously unable to turn her neck. Immediately, I was concerned. But.. my kid was playing outside, perfectly happy.. so I went off to work that night, mentioned it to my coworkers and decided that morning I would take her to the doctor. 

None of the symptoms added up, but her rapid strep came back positive. We were puzzled but began treating her for it. Vivian began getting very lethargic that week. There were entire days that she didn't get off the couch. Antibiotics weren't helping, and my poor girl was hurting pretty bad. So we ran a full workup on her.. chest xray, neck xray, blood work, etc. All essentially negative. No reason for my girl to be hurting, unable to turn her head and not wanting to move. She also complained all week that her chest her. Never said her neck hurt, even though she looked like she was in pain when she turned, she only said her chest hurt. This was all happening while Jake and I were moving into a new house that we had worked extremely hard for. The highest of highs.. followed by the lowest of lows.. 

After a week of no answers, my daughters PCP ordered a MRI. This is a slightly difficult procedure with a 2 year old because they have to be under general anesthesia. I guess this is where I should mention that Vivian HATES doctors. She always has. If she walks into an appointment for her sister, she screams the whole time. I'm not sure why, but she just hates it. So this is THE worst kid to have sick because it's so hard for the doctors to assess her. I end up taking videos of her prior to going to at least they can see what she says. 

Anyways.. Tuesday April 18th.. I get chills thinking about that day. My baby went in for her MRI. She actually had gotten better the day and a half before. She was playing, laughing and acting better. We actually would've cancelled the MRI had our PCP not advocated for us so hard with Children's to get us in right away. Thank god we didn't. 

They had explained to Jake and I the timeline of the MRI and when we would get our sweet girl back in our arms a few different times. They never mentioned a doctor coming in and admitting us to the hospital. I knew it was not a good sign. Her spine had "lit up" as they described it all the way down. Why? They were unsure. Infection is what it sounded like. IV steroids.. IV antibiotics.. my baby would go home. 

We were admitted to internal medicine. Infectious disease, neurology, neurosurgery and oncology were all consulted. Good. Lots of eyes looking at my girl. 

Besides the admitting doctor, the first doctor to come see us was neurosurgery, I mean, she nurse hadn't even admitted us yet. It had been a whirlwind couple of hours. 

Dr. Kamian, who was wonderful, came in and did an assessment of my girl. Then brought up the MRI to show us. "This is not an infection.. this is a tumor.. a tumor that has been growing for a very long time." 

Blackout. 

I remember looking at him.. his mouth moving.. words coming out.. but I had no idea what he was saying. I had to tell myself to focus on his words. Focus. 

A tumor? Are you looking at the right kid? My kid is perfect. She is the sweetest, nicest, most capable and coordinated of my girls.. wrong! You're wrong, sir. 

But as more doctors came in.. the reality set it. 

My god, I had just told Jake that morning while we were watching parents struggle with the sick kids waiting for our perfectly perfect two year old to come out of her MRI.. "We are so blessed Jake. I don't think I could handle all of that."

I've always said that. I can't handle it. I wouldn't be able to. Yet, here I am.. handling..ish. 

The next day, the neurosurgeon explain the procedure to us. The last time he had a tumor this extensive".. he started surgery at 9am.. and wasn't done until 2am. Holy. Shit. BUT.. that kid walked 2 weeks later!!!!!!!!!

I can't explain the procedure.. because.. it's awful. But kids are resilient. My girl is strong. 

There are tons of risk. Her tumor is in the middle of her spinal cord from C2 to T11. Pretty significant. As of now, he says he thinks it's benign. We will know more of they open her up for surgery. From what I understand, they can take frozen sections of the tumor during surgery and know if it's malignant right then! So, surgery day I will have a lot of anxiety, but at least then I will know! 

We are praying the tumor is an ependymoma. That sounds like the least scary tumor. It is mostly encapsulated and doesn't intertwine with the spinal cord as much as others. So, I guess if you have to pray for a tumor.. you pray for that one!? Feels so damn weird. My girl has started complaining of her arms hurting this week. And has thrown up a couple times now. All the damn tumor's doing. I guess she was itching her chest so much because it's tingling.. not necessarily itching, 

So now.. we get to work. I'm waiting on a second opinion from Cincinnati Children's. This time I'm ready with my questions. 

I have a million concerns. First and foremost, I want my girl to heal and live a perfectly normal life. I want her to be in college, probably becoming a doctor.. and explaining what happened to her when she was 2.. and everyone be awestruck, No way.. this beautiful, capable brunette couldn't have had a tumor when she was 2?! Yeah, I want it to be something no one could ever tell happened. I want it to be my hurtle, and nothing she remembers. 

I want my 3 year old and 6 month old to not wonder where their mom is.. and where their sister is. I want them to be completely unaffected. 

I want my husband to know that even though this hurtle is going to keep us from sleeping in the same bed for a couple months.. that he is the only person I could ever imagine going through this traumatic event with. He is the best teammate ever! 

We have the best support system ever. We are incredibly blessed to be in such an awful situation with the best people by our side. Storm the heavens for us. We need all the prayers we can get. I am going to use this blog to document our SUCCESS story.. and because I know I'm going to need some type of therapy. Hopefully just writing helps! ;-) 

What's up Wednesday?!

I have a clean house, laundry is in process, TV shows are caught up and babies are napping.. WHAT in the world am I supposed to do?! Bask in my awesomeness, that's what! ;-)

I decided to post a little bloggity blog. I'm bored, the house is peaceful, and I follow the coolest bloggers that do a "What's Up Wednesday?" so.. I borrowed the idea!

Cute, right?!

What we're eating this week: So, I saw on one of those facebook quick food videos, a "pizza grilled cheese". Listen, I salivated watching it, and just happened to have the ingredients. I made it for dinner and lunch. My husband loved it. It's a winner!
2 pieces of wheat bread, butter on one side and on the flat top. Add a slice of cheese (mine was colby), pizza sauce, mushrooms and turkey pepperoni. It literally takes.. 4 minutes?! And it's amaaazing!

What I'm reminiscing about: My big baby just turned 2 and my little baby is about to turn 1. I can't help but reminisce about how fast it goes. I mean, this time last year, Bryn had JUST started walking, and Vivian was still in my tummy. That blows my mind. They say it goes fast, and ya'll... it does. It really does. Like, this was only a year ago. But Vivi now wears that outfit. What? Weird.

What I'm loving: I am LOVING Bath and Body works candles right now. The Marshmallow Fireside is my surprising favorite. It makes my house smell so cozy. I bought 6 candles on Black Friday and have been obsessing over them.

What We've Been Up to: Last week, a clogged drain pipe lead to a pipe bursting in my basement. Oily, black water ALL over. Not fun. So, I've been home bound most days while the process gets rolling with insurance claims. My learning curve has been CRAZY high lately. A lot of people in and out checking it out, a lot of phone calls.. very stressful. My husband and I have actually handled it all VERY well. There was a time period, where if something stressful was happening, he and I kinda took it out on each other. But, we've really learned to ban together in crazy times. I love that guy.

What I'm Dreading: Ummm, I can't think of anything in particular. I work 4 nights in a row this week, that doesn't sound fun. But, it's not that I don't like work.. I actually do. I just don't like being away from home that many evenings. But, I also don't want to be at home 7 days/nights a week, then I don't enjoy it as much. Haha.. my mind ya'll.. it'll exhaust you! ;-)

What I'm Working On: Currently? Laundry. I have a LOT. My laundry room is in my basement. And I'm usually behind anyway. But, add on all the extra chaos down there.. yikes.

What I'm Excited About: I have a lot of excitement coming up. Jake's work Christmas party is coming up, and I'm not two weeks away from giving birth this year.. so I'm looking forward to not having to wear a circus tent to the party. I'm also really looking forward to my girl's Christmas party. I love a good 'ol girls night. My sisters are coming in town for the holidays, which always puts a little pep in my step. AND of course, Christmas! Vivi's very first Christmas!!! Eeeeek!!!

Oh, and we just purchased Justin Bieber tickets. Yup, I've got the fever. And I'm SOOOOOO excited. I mean, it's not til June. But come on.. I can be 26 and a Belieber, right?!

What I'm Watching/Reading: It has been a WHILE since I've read. That's on my New Year's Resolution list. (Book Club anyone?!). But, Jake and I have been watching The Vampire Diaries. We used to record them but hadn't watched them since.. February?! So we started watching it. Love it. We are huge dorks.

What I'm Listening To: Michael Buble's Christmas album. I'm not saying I don't like you if you don't like Michael Buble.. but I will say I definitely will question your judgement if you don't. It's so good. SO GOOD for the soul.

What I'm Wearing: A lot of sweats. A lot. When I do get dressed, I've been loving my plaid and leather jacket with skinny jeans. LOVE.

What's I'm Doing this Weekend: Working.. ALL. WEEKEND. Thursday- Sunday night!

What I'm looking Forward to Next Month: I have REALLY fallen off the wagon with my health. The holidays make my work schedule less consistent, so I make the excuse that I can't consistently work out.. so WHY work out.. at all? Makes sense, right? And if I can't work out.. why eat healthy? Again, total logic. I've fallen off. And I'm totally going to be a New Year's Resolution girl and get back on it next month. P90X, here I come!

And, my baby's 1st birthday! Eeeek!!!

What Else is New: Things are just GOOD right now. Last night I actually asked my husband "WHY are things SO GOOD right now?! What are we doing differently??" He had no answer. I don't know why, but things are just GOOD. Maybe cuz Bryn decided to start listening to me and doesn't throw fits. I'm not sure. But life is great!


That's it! Littlest Babe is UP, after THREE HOURS.. and Bryn is still sleeping. Crazy! This never happens!!!

Bryn Marie Turns TWO

I can't believe my biggest baby just turned TWO (November 27). I tried to get a post in prior to her birthday, but with the holidays, birthday party and my crazy work schedule.. A few days late will do.

It seems like just YESTERDAY, I was an overwhelmed new mom just coming home from the hospital with the teeniest tiniest baby that apparently I was responsible for. I was terrified and so anxious over whether or not I would be a good mom. I am very proud of how far I've come since that day. I really do feel like a good, competent mom.. most days. Even more so, I'm proud of the little girl I'm raising.

Bryn is the COOLEST KID EVER. Just ask her mom. I say it all the time, but she really is equal parts sweet and sassy. The girl knows what she wants, but also won't hesitate to apologize (and mean it). She runs at us full speed just to give us the best hugs, ever. She hugs and kisses everyone when she goes to sleep, or is leaving a party.. even if they are strangers. Speaking of strangers, I'm not sure Bryn has ever seen one. She is very outgoing. She is tough, too. She can topple over, onto concrete, and she will get up and keep moving while telling you "I'm OTAYYY!". She is very into pretend, lately. We do a lot of pretend tea parties here. And LOTS of hide and seek. I can sit on the couch.. put a pillow over my head (very obviously RIGHT THERE) and she will pretend she doesn't see me. "Hmmm.. where's mommy? In this SHOE? Nooooo. Under the blanket??? Nooooo. Oh! (Moves pillow) I FOUND YOUUU!". Seriously, so sweet. And we do it all day.
Bryn also really loves puzzles, coloring and blocks. And makeup. Oh, Lord! I can't leave my room door open without her sitting at my vanity getting into my makeup. Bryn also is into shoes. My shoes and her shoes.. and don't you dare try to tell her to take them off because.. world war 3.
She can count to 15 on her own. And can pretty much say anything. AND THE. GIRL. CAN. SING. I make fun of those people that say "I've been singing since I was two". But.. my kid really does. Any song. It's amazing. We almost always have music on because it seems to keep her in a good mood.

We aren't potty training yet, even though I'm pretty sure she's ready. She asks all the time to go potty. But, with it being the holidays, and we are always on the go.. we are waiting until January to commit to potty training. Lazy parenting? Most definitely. WE just aren't ready for that kind of commitment yet. She is still in her crib. I guess they say to keep them in until they try to climb out? Well, we haven't run into that issue yet. So, we will keep her contained until we can't any longer.

There really aren't a whole lot of things that stand out as "bad" behaviors for Bryn. All the normal toddler stuff. Yesterday she liked toast, today.. she doesn't. She throws fits. She wants candy.. or cookies, all the time. She doesn't sit well at the dinner table. Nothing too crazy. She is pretty good, and predictable.

Basically, my kid is awesome. I don't look at "milestones" for my girls because.. who freaking cares. I don't care what they are supposed to be doing at this age and I'm not comparing them to anyone. All I know it, I hit the jackpot when it came to kids. And I LOVE that Bryn is my oldest. I just LOVE THAT BABY.

 Seriously, have you ever seen a cuter little red head? Ugh, I love that baby SOOOO MUCH!!!!

A Day in the Life of a Mom of Two under Two

These days are the best days. People always say that to me. "You'll look back on these days and they will be the best days of your life". I have a hard time NOT believing that because.. I am LOVING it. And, I'm tired.

Bryn will be 2 in two weeks. Stop it. How did that even happen?? And Vivian is 10 months. The holidays are coming, which means I'll be non stop doing ALL the fun things holidays have to offer (and picking up extra shifts at work to fund all my holiday fun things). Our anniversary, Bryn's birthday, Christmas and then Vivi's birthday.. all within about 5 weeks. Sounds expensive and busy, right? 

I figure now is as good of time as ever to document what my days look like right now because in two months when things settle down, it'll all look different. 

As of now, I'm working every Thursday through Saturday night. So my week looks like this:

Monday- Home all day with babies

Tuesday- Home all day with babies

Wednesday- Home all day with babies

Thursday- Home all day with babies (except on this day, I nap when they nap and leave for work when Jake gets home)

Friday- Jake takes the girls to daycare, I sleep, I pick them up, and then when Jake gets home, I go to work. 

Saturday- Jake takes the girls to the YMCA while I sleep, I wake up around 230-3 to play with them, then head to work. 

Sunday- The girls hang with Jake, usually out doing something until noon or 1 when I wake up and my stent of days off begins! Usually this is the day we do something with friends or family.

It's busy, but it's the perfect schedule for us right now! Jake is obviously a huge help and never complains. He's pretty cool. 

So those "Home all day with babies" days are the days I will describe. I feel really lucky to have a job that makes it feel like I stay at home full time with the girls, but I'm also working full time. Best of both worlds. I seriously LOVE nursing. But that's besides the point. 

Our day usually starts around 6am. Bryn yells out "mommmyyyy, mommyyyy" and sings a little song (Eeee iiii eee iii eee iii oooohh). If she's crying when she wakes up, I let her stay in there a little longer. Waking up crying= a bad morning. Waking up singing= a good morning. We have way more good mornings than bad. 

Vivi usually wakes up around the same time or about 15 minutes later. Diapers changed. I usually put their day clothes on right away and make breakfast. 

Bryn usually eats toast and yogurt or a nutrigrain bar. Vivi eats a nutrigrain bar or pancakes and then a bottle.

Around 630- 645, Jake gets home from the gym. The girls watch Mickey Mouse or Little Einsteins. (And lately, Bryn has been requesting "Ho Ho" shows.. how did she even know?!) While he showers and gets ready, I listen to music, make coffee, light candles (I'm a smell FREAK), unload/load the dishwasher, and make breakfast.  Toast, turkey bacon, avocado and egg. The only thing that changes is whether or not I have turkey bacon and/or avocado. Today, we had toast and eggs Haha! Someone needs to hit the grocery! 

Jakes heads off to work around 730. Bryn always tells him "Go make da monnneyyyy!". I clean up the house for about 30 minutes. My house is always 30 minutes from looking clean. Doesn't mean it's actually clean. But it can LOOK clean, hehehe! In fact, I think I need to clean the bathrooms today because I can't remember the last time I did. Yikes.

For the most part, on my days off, I go to the YMCA. When it's nice out, we walk. It's only a half mile or less from my house. I take the girls to the daycare and do one of the classes. There is always an hour class I like usually at 835 or 935. After the class, again if it's nice, we go to the park which is between the YMCA and our house. Since it's starting to get colder, I'll be in the "family gym" more. They have it set up like a little gymnastics room. It'll be a good area for the girls to get energy out. 

** Some days we just lay around in the morning. Clean a little, play a lot, do some refereeing between the girls, color, craft, take walks, play outside, play dates. Our morning varies. But MOSTLY, I do the gym.

By the time we get back to our house from the Y, it's about 11- 1130 and time for lunch! Bryn was never picky and ate everything in front of her until recently. Now, whatever I can get her to eat is just fine with me. Vivi has a really cool habit of throwing every other bite onto the floor. Lunch is.. messy. 

Around noon, I lay the girls down for a nap. They both usually talk to themselves for 20 minutes and then go to sleep. Neither of them really fight me on it. Bryn even requests "night night" time sometimes. 

Jake comes home around 1230 for lunch. Watches Sports Center, updates me on his day, and vice versa, then heads back. Then, for a glorious hour, it is MY time. Sometimes, I deep clean the things I can't do while the girls are up. Sometimes I nap. Sometimes I sit and watch tv. Sometimes I shower and make myself look human. Yesterday, I crafted. Just depends on my mood. But on Thursdays, I always nap because it's my only sleep during a 26 hour period. 

The girls wake up around 230. We usually stick around the house in the afternnoons unless I need to go to the grocery. We clean up from the morning activities, do a lot of playing, crafting, play outside, go for walks.. whatever. Nothing too crazy. The girls are usually pretty calm right after their nap and will let me Pinterest, read, make dinner, etc. 

Jake gets home around 5:30. Ahhhh. My favorite time of day. :-) We eat dinner all together... forabout 5 minutes before Bryn deems herself "allllll done" after eating 3 bites. The dinner struggle is REAL. Jake and I attempt to update each other on our afternoons, but it's usually interrupted by "Daddy, read!", "Daddy, dance!", "Daddy, SING!".. or crying. Bryn is manic around Jake, She thinks he is her personal dancing monkey.. and he pretty much is. 

After dinner is bath time, and whoever isn't bathing the girls does the dinner dishes. Post bath is PJ, reading and snuggling time. We read a LOT of books. Like, a lot. Bryn is obsessed. 

The girls go to bed around 7:30. We LOVE their early bedtime because we still get to watch a few shows together, have some quiet time and relax. We always have "our shows" and then our individual shows. We are currently watching The Walking Dead, The Blacklist, Heroes, and The Voice (even though we are like 7 episodes behind). 

Bedtime comes around 930 or 10. Vivi still wakes up once at night on most nights, mer. Aaaaand... that's our days!

So simple, right?! It really isn't bad! I always say that overall, I have really awesome days. Some moments are rough, but I don't have a lot of overall BAD days.

I'm sure things our schedule will change as the weather does and as the holidays come.. and as Vivi begins to WALK. Yikes.

<3<3 Ashley