Monday, March 31, 2014

Pre-op completed

Chris and I enjoyed a quiet evening snuggling, sharing ear buds while watching the sitcom New Girl. Owen slept in between us until about 2 when he decided he wanted to go home and stayed awake until 4. Ara slept like a champ- I woke her up at 330 to feed her as I thought she would wake the second Owen fell asleep!

We had a great lazy morning in the trailer, attempting to get organized and play with the kids. We checked in a little early.

We got a lot done today. We put a checklist on the whiteboard: EKG, urine sample, vascular ultrasound, labs/IV, procedure & consents done, and meet our surgeon. We also had child life very involved today with different procedures. Owen had another hard time with the IV even using many tactics. He recovered quickly and got to pick a treasure from his monster truck treasure chest. 

Oh the memories of this place... On a rainy, stormy day it was 80 degrees in our room... We were so hot all day, Owen was the pinkest we've seen;). 

We enjoyed meeting the surgeon, NP, and PA who will have Owen's case. They gave us a lot of tlc and we learned more about his surgery. Chris is better at the anatomical particulars but his heart is going from a 2 ventricle heart to a single ventricle anatomy. His right ventricle doesn't do much anyway. Also he will be having a fenestrated Fontan where a crescent shaped hole is made in his right atrium to help pressures normalize. His pulmonary artery is being split to create a better circulation. A shunt will send blood from one place to another place. See? Told ya Chris is better at it! Lots going on in his little chest tomorrow. 

On that note I'm going to lay Ara down and have a little quiet time tonight. Court is on her way over to hang for a bit. 

We are so overwhelmed and blessed by all the support. YOU make this process easier. There are people praying in different churches, different continents (seriously!) for us & Owen. We feel it. We welcome it. It warms our souls. I'm oddly calm today. The anticipation was very challenging and no doubt tomorrow will be hard but we are going into it strong and positive! 

My mantra and prayer:  Owen is an intelligent, silly, and
resiliant goofball. He has already overcome hurdles and will overcome this and more. He will heal and thrive. 


Sunday, March 30, 2014

Setting up camp

So, Owen has named our trailer boom shacka lacka. One of us must have said this once and he thought it was hilarious. So tonight we are staying in boom shakalacka. Ara is asleep, Chris is trying to put Owen down at the opposite end of the trailer and I'm trying to be quiet! This is one of those things I was just not sure how it was going to work until we were in it. Haha tip toeing around the trailer at night. Guess I won't make many phone calls after 8. Here are a few pix of the trailer and our awesome day walking around the area. Get admitted at 11 tomorrow. 





Go!!!

We are on the road. Sad pants Arabelle cried for 30 mins then fell asleep. You betcha we didn't stop for lunch even though we are hungry. 

Leaving home was very hard for us, we've got it so good!! We enjoyed one last crazy dance party this morning as Owen will need to be careful with his upper body when we get back.  And we are serious about these dance parties. They involve spinning, dipping, dizzying, and mad twirling. Much love, 

Saturday, March 29, 2014

Set.....

The trailer made it down to SF. Thank you nana and papa Britton for taking this on on a rainy Saturday. We have had a nice homeday packing up, breakfast with aunt Jac, cleaning, doing laundry, eating sushi with the Avery's, and multple dance parties. Owen had a nice goodbye with nana and papa as well. We got a drop off from Lori with some scrap booking items for the child life program. Ara has had a rough teething day, hoping it's one of the last for awhile. 

Thank you all for the continued love, support, calls and messages. This blog made possible by eating and sleeping Ara:) right now. 

Thursday, March 27, 2014

Ready...

Well we are counting down for sure now. We stopped Owen's daily aspirin yesterday, and the gears are really turning for leaving for SF. It's a crazy thing to go through twice already, and yet this third time seems so much more intense, with more unknowns. He is older which is better so he can communicate with us, but this is also something that is so challenging to explain to a 3.5 year old. I have made a coloring book explaining our trip to SF to help prepare him a little bit. He knows his heart is getting a tune up. He knows he gets new toys in the hospital. He knows how to deep breathe and to ask for a hug if he is sore. Other than that...


I had some awesome friends offer to shop for me, do errands, etc. We are so grateful for family and friends. What would we do!??? I had my mom come over and I got out of the house solo this week, what, what!!
Got a quick run (aka therapy) sesh in with Wynt on the trail by traders.

Chris is going to Costco and the feed store tomorrow to finish up his "to buy" list.

Ara decided to cut 2 teeth this week. I AM HOPING THOSE SUCKERS CROP UP ASAP!! They are poking out, she is pretty bummin', and I am soothing her most of the day & night.
This is for a laugh. We are both eating avocado with a spoon for dinner. Like mother like babe! It's also on both of our faces, guess I need a bib too.

We have had some visitors come to wish us well. Of course with no illness, no sick contacts, and sadly no children. They stop at the sink first to wash up, ha, that's nothing new coming to our house! It has been great to have extra hugs and love when we are in locked down. Owen enjoys it too.

Uncle Dave is going on a business trip during April so we will miss out on seeing him. Owen loved his playtime with just uncle Dave!

Saturday, March 22, 2014

Game face

I have for sure been in a funk... sleep deprived, emotional, hormonal, overwhelmed, and overworked. The overworked is kind of a joke, as my week last week went from my usual 8 hours to 20, ha! I had an influx of private clients, a feeding therapy client, and some contract work to complete. I love all my job dabbling but with a few extra items on my plate, and a few less zzz's this past week has been a bit crazy. Every morning chris was off he was watching the babes so I could fit in extra hours, what an awesome dad and partner.

This is post isn't about a pity party I'm throwing over here, but a written statement claiming my change of status, de-funking myself right here and now. Everyone has a busy life, commitments, work, family, errands. I know that. Sometimes it's just too much. I've had mAny offers to help us out, and I'm not sure what we need.

So the funk is over, regardless of hours of sleep, hours worked, to do lists to complete, or social opportunities missed. The funk is over because there are bigger things on the horizon. Of course that is the main source of the funk itself, but why continue to worry and dread? It has to happen and it's going to happen. It's the right decision and we are well equipped to handle what comes.

Here....I.... go..... reset! Funk begone!

Tuesday, March 18, 2014

Coffee, Mohawks, Mud, Packing, & Prepping

Sleep is still a hot commodity around here. Owen is usually sleeping decent, and Ara is usually up twice a night. Chris and I end up putting ourselves back to sleep 2-4 times on the average per night. It is getting old but this is an improvement from the post cath nights for sure. Also, I'm really hoping that Ara will sleep well in the trailer once we are in SF.

By the numbers~
Thoughts in my head last night~
2- weeks until surgery
11- days until we leave for SF
5- family days we are off and home
7 days- Owen must stop his aspirin prior to surgery
1- cup of coffee per day, craving
4 more cups
5- weeks off of work
2- house sitters sharing the responsibility
18- animals to feed
3- to do lists "to buy", "to pack", "to do"
1- Mohawk haircut given to Owen while I was working yesterday
2- hours Owen spent coloring yesterday
6- sandcastles made over the weekend
1- raised bed planted with Owen over the weekend
0- naps taken by adults
8- monster trucks covered in mud from our homemade mud pit and race track

Chris has been prepping a lot as the days are now numbered at home. He wanted to get as much done beforehand as we just want to hang out as a family until we leave. I think this is likely! There is still a lot to do, but I have crossed off quite a few things on my lists. Packing clothes and getting the trailer ready to go is the main focus. We appreciate all the help, prayers, and love.

Thursday, March 13, 2014

Hiding under a rock

I felt like hiding under a rock Tuesday. With kids this is not an option... Chris watched them so I could take a nap... I couldn't fall asleep... 

I've been having problems sleeping/going back to sleep. Monday night was a night of very little sleep and waking while dreaming doesn't start the day off too crisp. 

Sweet Owen either wakes up crying or knocking at his bedroom door. Tuesday it was loud knocking, which I usually respond to very quickly so as not to wake the other babe!

Anyway, I felt so much better yesterday! I got 2 3 hour stretches that night and about the same last night. Hoping to stockpile some zzz's to draw on in the coming weeks. 

I did get out on Tuesday to look for a costume for a party on Saturday. It is my boss's 50th birthday party and 70's themed.... Also,  our first date since Ara was born!!! Did you hear that?!!! I'm so excited!!! We are going out to an eay dinner, then changing into costume (somewhere!?) and off to the party. Home by bedtime is the plan. 

So excited to spend time with my love! We love the littles but this is needed!

Saturday, March 8, 2014

Date Change

I got another call this week changing the surgery date to 4/1. No problem for us, getting admitted on a weekday likely means we will get to meet the surgeon prior to surgery. 

We are in planning mode, making list mode, and coordinating care mode. Not really sure how it's all going to work but it will. 

Monday, March 3, 2014

Got a date!

I was about going crazy waiting and waiting for a call. Now that we know, I'm thinking I liked not knowing when it was going to be! So hard to please.

I guess the team requested Owen's recent telemetry strap readings and they couldn't read them so kaiser overnighted a new copy which got there Friday. (These results were normal, by the way, and they also had them down there prior to the cath 2 weeks ago as well...) the scheduler was out Friday so no calls were made.

I was waiting until 2pm today and then I emailed, called, and got to the source! We picked 3/31 with an admission date of 3/30. So there's that. 

Now we have a few days of "freedom" before lockdown (germ lockdown). We saw cousins this weekend which was great. It feeds our soul as well as Owen's.

We just put the kids to bed, and Chris is lining up reservations for the RV down there. We want to have a home base that we can come and go to, sleep during the day, have Ara be loud, etc. 

There is a lot more to plan but for now that's in the works. I'm extra tired tonight, been up since little Ara was up at 4, then Owen at 5. Those kids need to coordinate their wake ups. I was able to convince Owen it was still nighttime and he fell back asleep until 6. 

I got home from work tonight, we all enjoyed homemade pizza, and the kids were cracking up at each other. This is the stuff!!

(Hard to catch moving targets!)

Thank you for the continued prayers & love. You following our journey helps us feel the love.