Kitchen tomfoolery & mess making

So we had frozen ravioli the other night which freed up a little time in the kitchen. I purchased this pan a few years ago at the thrift store and have never used it... An abundance of Spring chicken eggs + about 20 minutes prep time = homemade angel food cake. I didn't have cake flour so it was a little dense but very good. You can find the recipe here.

I was inspired by my friend Joy to whip up cream as well, so delightful. Haven't whipped cream in a few months. It really is like eating clouds. I think she added vanilla bean caviar but I used vanilla extract. Way better with vanilla bean but we both still licked the plate clean. 

 This creation was a dinner-was-taking-too-long-and-I'm-starving snack from a different day:

SP cocoa delight
1 sweet potato, cooked, peeled, and mashed
2 TBSP cocoa powder, or more if desired
1 TBSP homemade almond milk
fork mash it together until somewhat uniform (could also use food processor or vitmix)
spread on anything... These are plantain chips from Trader Joes

No-knead multigrain bread

Third time making it, it's really easy but meets to sit overnight. 

I have the hard copy of the recipe from Mary Jane's Farm magazine, but here is the link to an electronic one:

http://kathrynlovett.com/2012/11/05/monday-artisan-bread/

If you try one of these let me know! I don't intentionally cook or bake anything too labor intensive- you have my easy(ish) button stamp of approval.

The dishes can wait

We have really been enjoying our time off together. It feels like maternity/paternity leave again with the 1:1 kid:parent ratio.

We are all so blessed to have this time off together and to have half of it be at home. It feels like Christmas every day to have my loves right beside me. Owen is acting pretty normal besides the night waking and the incessant daddy-wanting is slowly losing strength. 

Seems like the days rotate around sleep but that's what it's all about being a parent of littles. This is our last week off together, and we are doing up all the laundry from the trailer, cleaning it and our home, and doing springtime property chores. Somedays the stars align and the children sleep at the same time. This is truly a miracle as far as I'm concerned! Ara's room is so close to the kitchen so I am forced to be quiet.

I was a little social this last week, stopped by a sister's birthday party and a wedding shower. It was great to get out and celebrate old friends. I gifted the future bride an apron I made and I wish I could have retracted my reply when talking about it! The power of retrospect... I can re-live that moment here:). People were impressed that I made it and have little ones, and my lame comment was "I don't sleep much."

 I should have said: "Around our home, the dishes can and do wait." 

This is the honest truth! I'm not staying up until odd hours crafting, or running all over town for supplies. I had the fabric stockpiled and I found some that reminded me of her. I cut it out in 2 sessions and put it together in an hour after bedtime. Yes it was a nice gift and yes it took me some time, but yes there were (and are!) dishes in the sink. And yes I enjoy making things with my hands too. 

So there, I'm not a Martha with a sparkling house (unless my aunt or mom comes over and helps out!), or a mom who stays up late to wake up to a glimmering kitchen every morning. Something usually gives to make way for something else, just like any choice in life. 

When I'm cleaning sometimes Owen will ask me to play with him. I really strive to walk away from my task to hang. I've realized I can't keep up with the domestic demands nor do I want to. 

So if you come over there just may be dog hair tumbleweeds and baby food spoons thrown on the floor. I wish I would have had the right words at the shower-as I'm not ashamed to admit it- but next time I'll have the answer ready: the dishes can & do wait!

Results

Chest X-ray is clearing up slowly. Labs within normal limits! We are decreasing one dose of aldactone daily. Follow up with primary on Tuesday, and echo & EKG in a month. Ara has her 6 month appt Tuesday as well. Thank you for your continued support. Praying for better sleep. Owen was awake 2-4am last night:(. The adults are in bed at 9 most nights around here! Teething ara and stressed Owen is almost like having twins... This too shall pass...

Owen Update

The phone appointment Monday went well. We tapered a diuretic to one dose then no doses the last 2 days. He is going in for another chest xray and labs today. He doesn't know it yet. He did play a wicked game of RN and MD last night, he was so happy! He also mentioned this morning that he's so glad to be home from the hospital. Hopefully his chest congestion looks better and we can continue to slowly taper the meds. He's on Lasix and aldactone twice a day, and his usual aspirin once per day. He was also started on previcid, which we didn't give for the first few days home. After he continued to eat poorly and continue to be kinda gaggy 1/4 the way through meals we decided to start him on it short term. Something has helped as he is eating practically normal! He is also off of 2 of the medications that he came home on, which of course list nausea, stomach upset as side effects. (Seems like all meds list this!) We have decided to stop it next week and see if he continues to eat well. He was on it as an infant and I think it is just a knee jerk prescription in conjunction with the other meds he was on. But we aren't knee jerk parents, if he doesn't need it or benefit from it, he doesn't need it!

He continues to amaze us. He is playing, dancing, wanting to wrestle all the time. His incision looks AMAZING. I know some pictures we posted looked a bit rough but they used surgical glue which made it look a bit intense. It really looks great, I'm so impressed.

Thank goodness last night we got some decent sleep. The night before Ara woke at 2, 4, 6, Owen was up 230-330. LOCO! I felt like a hungover zombie all day, Chris slept in a bit, then I went to rest when the kids took naps. So great to have time off to not have to be anywhere when we are pulling all nighters. Ara is popping more teeth and either Owen can hear her crying or he is still having some post- hospital stress issues. He is improving with his night waking but usually the kids conspire to have a whole house sleepless night!

Fingers crossed for a smooth chest xray and labs for Owen & Chris.

I found this goofy old picture when we were growing his hair out and he was still in his crib!

Ara Mae is almost crawling, eating sweet potatoes and green beans, and blowing spit bubbles these days. 

Volunteers

One of our compost bins has a ton of volunteers right now. Love seeing new growth come from the food waste. We give so much to the chickens that I have to make a planned effort to feed the compost. Our garden is very small this year, especially with recent water rations & recommendations. 

We use an old plastic trash can with many drilled holes in the sides and bottom. With a little tlc ( I really do mean a little) a home compost will turn itself into fresh dirt in no time!

Home days

We are all doing well. We have been spending a lot of time here at home which is just fine with me. I left twice last week! 

We have had meals, helpers, and trailer picker uppers helping us out. Since we are both not working and Owen is much MUCH more stable on his feet we feel almost back to normal. Owen is still waking multiple times at night, screaming for daddy. He had 1 night where he slept through but has been waking 2-3 times per night. He only wants Chris even through the day as well, so this has been interesting for Chris to shower, mow the feild, go to the bathroom, etc. 

 

Owen was acting his normal self yesterday so I felt ready to discipline him. For so long we have let a lot go, using only gentle reminders for things. But rules still apply even though he has been through a lot. We've also been tapering the technology down. The kindle has been worth it's weight in gold, but setting up new rules for that is good for us all. He played it in his sleep in the hosptial!

Thank you to all who have offered to help with meals. The first few days home felt like we had 2 infants but now we are feeling the benefits of a low anxiety life, breathing somewhat carefree air into our bodies. 

We had a great home day yesterday, on Easter. Grandparents came over and we spent as much time outside as we could between each kid napping. 

So blessed with these babes. 

Phone appt today with cardiology to check in. Off to give Owen his morning meds (Thank goodness for the gtube... So nice to use it for meds instead of battle the gags!)

Follow up appointment

Chris and Owen went to O's appt together. I wanted to go of course but bringing Ara I wouldn't be a lot of help. I has also been preferring Chris at times like this so I sat this one out. 

O had a hard time with more medical stuff. He's just over it, wants to be left alone and was freaking out even before the chest X-ray. Two nice ladies let him go before them, turns out if you have a screaming child and you mention 3rd heart surgery that gets you to the front of the line! 

Our usual cardiologist took a week off (usually an awesome workaholic) and they met another great doc. She said his X-ray still shows congestion but it's normal for post Fontan circulations. It can take a while to clear. She did decrease his lasix and discontinue a blood pressure med, so awesome. His weight is only* down 2 pounds, he looks like a skinny chicken legged man. We estimate a pound at least of fluid loss and the rest actual loss. 

Didn't have to do labs thank goodness!!! The EKG and vitals pushed his threshold too. 

Owen did better with he face to face with the doc, she told him her 3 year old girl likes monster trucks. Owen asked her where they were and she said at home. He asked her where she lived so they could go play with them:). 

Ara and I got out and enjoyed the sunshine. Being a mom of two I feel torn a lot of the time. Working on having peace with where I'm at, as it's usually with one of the kids. Ya just want to give 100% to each of them all of the time. Some people make this look easy breezy but it's not. 

We went on a little family stroll last night. Md recommended increased walking as tolerated to help his circulation and fluid. Our neighbors goat peeped over to check us out.

Processing

We are still processing what we just went through. It was so intense but also not foreign. It was so risky but we have waited in the same waiting room for report. We had so much anxiety and build up that I kept thinking I would have a huge meltdown or gianormous emotional release but mostly we just kept going. I cried my share, for sure, but a lot of that was on my way home to the trailer once Ara started crying. I called it our nightly cry;). 

 

Being home with Chris and the kids the last few days has helped me process everything. I'm still processing the first 2 surgeries! But instead of anxiety I feel relief. Instead of dread I feel peace. 

We still have a ways to go, more time of "lockdown" aka thinking and acting like all kids are already sick, avoiding any potential sick contacts, Owen to heal and recover, and change our social lives a bit. (Not that our social lives are too social!) 

Owen is acting like himself, moving a lot more, and getting outside. I didn't realize how much he would be need to be limited but it's pretty tricky to keep him from using his upper body too much. 

Owen has been having more anxiety, night waking the last 2 nights just like he did with the heart cath. He only wants Chris and Chris has continued to sleep by him. We have re introduced the monitor to keep watch during nap and have removed the roll guard as it was too crazy lifting him up and over that. Minor adjustments to protect our boy. 

Life is so good, love our bubble!

Home sweet home

I'm so impressed by our avid readers! I usually blog once per week on normal circumstances and much more frequent during hospitalizations. I may take a little break but wanted to update y'all on our homecoming. 

Owen melted down many a time on the way home. Waiting in the kaiser lot while Chris went to pick up prescriptions was no exception. Owen wanted a big hug so I clicked him out of his seat, scooped him out (no underarms for 6 weeks) and hugged him hard. Ara wanted out then and so I I clicked her and let her wiggle like a weirdo in her seat. Who walks up but our awesome pediatrician! I was thrilled to see him and it took him a minute to put it together we were actually on our way home from sf. All the crap packed into the Prius helped clue him in:). Owen was not a fan of seeing yet another doctor so he took off...

Owens eyes lit up when we turned on our road, he kept saying the name of it over and over again. So cute. We walked across the threshold as a family, and Owen said "home sweet home" in his little soft voice. 

It was sparkling clean, groceries in the fridge, and decorations up. Dinner was in the fridge and our animals were happy. Iris in bloom, lilacs still going strong. Garden sprouting up and the air so sweet. Whew!!!!

Owen was beyond excited and exhausted. We were behind on his meds so we needed to wake him up to give him his diuretics. Then he woke to pee twice. Chris slept in with Owen. I had our big amazing bed to myself and it was just delightful!!!

If you ever think you have a small home (ours is perfect at 1600 sq ft) live in a trailer and hosptial for a while... Your home will seem like a mansion! There's so much room, ha! 

We had a wonderful day being mostly lazy although it is very busy following Owen around. He is not super stable on his feet, is weak still and we don't want him to fall. The other part is trying to keep him from using his upper body too much. The incision needs to heal well and any form of upper body pushing puts a strain on him. Have you watched an almost 4 year old play before?? That's all they want to do!

Aunt Kim came over to give us some extra hands today, she helped unload the car, do the chickens, play with kids, and made lunch. Chris also had naps today courtesy of her help! We have our hands full and I'm not ashamed to admit it!

Dave's sister aunt Kim came for a quick visit and delivered the awesome team Owen august bracelets. She was so creative to contribute to our journey.

Owen got to see his girl cousins & uncle Dave for a quick visit today. Dave was gone during Owens surgery and wanted to see the kid and his cousins were starting to wonder when they were going to see him. 

We are still being very cautious with visitors, especially kids. This healing time is very crucial for Owen, and setbacks are no good. we weighed him today, on our scale he was down about 3 pounds from their scale. He is very dry but he has lost true weight too. He ate about 70% today I'd say, and more nutritious than curly fries! He was so excited for basil he asked for it after breakfast:). 

Signing off from HOME!!! Chris and I are going to enjoy each other's presence tonight. We were coordinating baths, meds, and unpacking last night we didn't get in bed until 1030. 

Home sweet home!

Homeward bound

Sitting in the railway station 

Got a ticket to my destination..

Homeward bound baby!!

We've been en route for 3 hours and lets just say we are all working on our patience. 

We are in Davis and still need to pick up meds on our way through. Traffic has been plentiful, lots of people love California. 

Lots of meds, appointments, and caution ahead with Owen. He needs to be watched closely as he isn't supposed to use his upper body for much. Also he is still weak and wobbly walking. We really can't leave him on his own/alone for more than a few seconds. But we will be home. 

We've had so much support and help and we can only strive to do this for others in similar situations. That is truly the only way to thank someone, more meaningful than a thank you (or gratitude card!) Paying it forward, baby!

Sac town is in the distance. Ara is yelping like old times and we are so so so excited to get out of the car and HOME!

Fingers crossed

Today we switched some things around. We lightened the pain meds, and stopped vitamins and miralax to see if it helped Owen's appetite. It didn't seem to make a difference for most of the day. 

Marsh was a huge help, she took orders like an obedient mama! We had some good laughs and ate too much sushi. 

Owen napped most of the morning, wanting us to sing him songs and sit in the chair just like home.

Ara slept at the same time (on me) so I could read a little material I brought and have barely cracked into.

 

Another nap, hopefully the only time she sleeps in a hospital bed!

Owen woke and we tried getting him to eat a bit. Not a lot of luck. Seems like his last thread of control is to refuse food.

Later on he devoured almost a whole serving of curly fries. guess he was holding out for the junkier junk!

He needed an echo and EKG today and we worked with child life. She made him an awesome superhero doll and Owens RN Vince today even dressed up like a superhero! Owen was just not feeling it, crying, resisting, pretty much fed up with it all. 

We made it through the echo pretty well, Owen fought more for vitals and re taping his IV. 

The EKG was a challenge because he has to lay still and we pretty much have to hold him down for 10 seconds. Not fun. All done. 

Echo looked good and the fenestration is actually open. This is good. EKG looked good too, whew. 

Owen got out of bed a lot today (no more playroom... I didn't bring enough wine to tackle another playroom visit). He walked the halls, played and jumped monster trucks with grandma and I, and drove in a mini car around the unit. So nice to ditch tubes!

Signing off, I'm headed to bed. Hopefully we will go home tomorrow or Saturday. His morning chest X-ray wasn't clearing up as fast as they would like so we will know after the next chest X-ray tomorrow. If you're ever worried about the radiation from X-rays in kids just know Owen has had quite a few and he's doing pretty well. They cover up his trunk and privates:) 

Superhero Owen!

Mad props to our housesitters, and my extra hand people we've had come down. This would be a very different story without our people with their hands & hearts in our world: Jac, nana, papa, papa schlitz, court, Wynt, marsh, Randi, Dan, Bryce, Amanda, josh. Its been so amazing to have so many people shed light and love on our family. Plus the sweet car packages and goodies have made this adventure quite a bit smoother. 

Disclaimer: blurry photos are a pet peeve of mine but kids move a lot and this is what I've got for today.

Better day!!

Quick post going to do some laundry once aras done eating. 

Chest tube came out, oxygen off, heparin stopped! Owen was stoned on Ativan so he slept through the chest tube removal. (And then some!) He had a large bm which we thought wld help with his appetite which has decline the last few days. Sutures were also removed today.

It was awesome to get up and get him moving without the oxygen tank, IV pump and tubes. Also it was cooler today. The rooms are so hot on this unit as there isn't up to date central cooling and the unit faces the afternoon setting sun. They didn't want to upgrade as the new hospital opens in 2015...

I've been asked a few times why his sats are higher now. They were 94% sleeping on room air today!! Wahoo! His blood isn't mixing like it used to, so it's oxygenating better. That's as good as I can describe it. The Fontan circulation is very interesting and we will become more familiar with how it affects Owen. 

Another question I've been asked is if he is going to be okay? This is a hard one, but the short answer is that these three surgeries are seen as a bridge to transplant. They are palliative and are done to buy time. Owen has a pretty serious form of ebsteins in that his right ventricle didn't do much. Some ebsteins anomaly kids don't need surgery and some have it so severe that they don't make it or tolerate the first surgery. So I don't have an answer but hopefully he will be able to live a somewhat normal life with a few tweaks along the way! He should get at least a few decades out of this tune up he just got, or longer!

Owen is making this look pretty easy. Echo tomorrow morning, and po meds starting: plavix and aspirin as well. 

Continued prayers for healing are appreciated. He is doing amazingly but isn't eating much and is pretty weak. Fingers crossed for running up our driveway soon!!

Onwards!

Today was a better day. I was as usual a bit overwhelmed but we are making it! Marsh helped with the kids, Owen was having a ball with his new monster trucks and key car. 

His output out of his chest tube was less and the chest X-ray looked better! His surgeon paid us a visit and mentioned possible home Friday again...!!!!!!!

Still need to remove chest tube

Then o2

Then change heparin to plavix

Then wean diruetics and check electrolytes 

Also increase activity. He is weak and walks wobbly and hunched. He had a little fall tonight while walking with dad but dad made the decision to let him fall versus grab under his armpits which you can't do for 6 weeks. He's short and it was a little bail, no worries! 

We went to the hot hot playroom today. It was quite an ordeal to get an IV, chest tube drainage box and oxygen to the playroom and a kid! Plus I was wearing sleeping Ara. Marsh came with and helped thank goodness. I about keeled over in the heat, but Owen had a blast. It was quite busy with 8 kids and one child life specialist. Owen wanted to get there so badly and the elevator was taking forever! He was being so good poor guy. In the middle of playing with the kitchen foods Owen announced "I have to pee!". This playroom for some reason is not equipped to handle these sorts of things. The awesome ladies scrambled around and found a basin, grabbed a blanket, and dropped his trousers faster than you could say "have to pee!" Three times fast. One felt he need to hold the blanket like a curtain. I just got out of the way and directed traffic as I was wearing Arabelle. 

After the near splash episode another little girl decided to attempt to squeeze through the 5 inch gap between Owen and his wagon. (That wheeled him down to the playroom). I about pushed that little 4 year old girl toward next Monday when she approached his IV lines... Not the IV line! Please no! Save the IV! I would do pretty much anything to keep that IV as long as we need it!!! It is always quite hard to get one on Owen, and to have to do that again or have lab sticks daily would be quite miserable thank you very much. I apologized for potentially abusing the little girl, and she went on playing far from the protective mom in the room... 

All in all it up being a great day. I heard Owen's belly laugh I've been craving so badly. I worked for it hard and I got to hear it. He is starting to look more like himself! Oh boy! He's doing great a week out! Fantasnic as he says!

One step forward 2 steps back

We are still out of ICU and in a private (and hot!) room. I'm trying not to complain about the heat too much since the other rooms are so loud with 2-3 in a room and curtains to divide the rooms. 

Owen has been very whiny, uncomfortable, and unhappy with most things. Of course we want to make him more comfortable, happy, give him what he wants, but it is never the right thing even if he asked for it already! 

From a medical standpoint there are a few things going on. They think that his fenestration (aka pop off valve created in surgery) has closed. It's the 4mm crescent slit created in the atrium. If it was still open his sats would be a little lower and he would likely be putting out less fluid from his chest tube. 

That's another issue. He was on the right track yesterday and they thought he would be getting the last one out soon. Today it only put out 70ml compared to 330ml (or something close to that) the day before. I have a delayed excitement about that because his chest X-ray was looking worse today and like more fluid is building on his left side where the chest tubes were taken out.

Electrolytes still low, potassium 3.1 and na 133. They have gone up on the blood pressure meds and the diruetics to help the fluid balance. Poor guy is so thirsty and asking for water, yummy water. And the room musta been 85 degrees. He's not technically on a fluid restriction but it's better for him to have calorie/electrolyte beverages like choc milk, Gatorade. Vit d is a non issue for 2 weeks we will up it when we get home. Got some great metagenics product coming via amazon prime.  

Marsh came today and was my extra hands boy I needed them. So far we haven't had a gap in extra hands/ara care. Court helped us out this morn before marsh got there the two kids are quite a handful. 

I'm winding down, going to shower off the day. It was gorgeous outside today I left Owen with marsh and I took ara out for a little hike around for 30 mins. It was so beautiful. 

Happy 61st to my dad! Last year we partied hard, sorry this year I wasn't able to party on. Glad you're here pops. He makes the best Carmel corn too... I may or may not have eaten a large ziplock of it over 3 days... Dietitian what?! Breastfeeding burns cals, guys. 

Things that made me laugh:

-I've be sleeping on the top bunk in the trailer and Ara is underneath me in a pack and play. To get her out/in one must  hunch over to get under the top bunk. Bed:3 head:0.

-Marsh put one of Owens diapers on Ara. (Owen is potty trained but the diuretics are strong...) she wears size 3 and Owen is size 6. It worked. 

-Ara rolled under the bench in the trailer and I couldn't find her for a minute

- When Wynt wore ara everyone thought she was her baby and Wynt just went with it

-putting cleanser on my face not once but twice thinking it was lotion

-closing my eyes for a second while walking down the hospital hall and walking straight smack into a hospital bed. My hands were full and I was wearing Arabelle but.. Whoa. Goose egg on my shin! 

-Owen playing the kindle while falling asleep. It's like a security blanket but electronic

-Marsh offered Owen a bite of pizza tonight and he said "I think not."

We are getting amazing care from the docs and RN's. It's like we've been through this before and they know us or something;). Lots of the same people has been nice. 

Ok gots to shower. Signing off from my trailer to yours:). 

He was so so so excited to get to go to ge playroom. Playing with him was so special, but I realized how weak he was. He is so strong but he just seemed so frail playing with the toys. He wasn't moving out of his chair or running around. I haven't heard his belly laugh in a week. It was bittersweet. We will get to playing harder soon. 

Here's Ara happy as can be under the bench!

Sis

She's being a trooper!

She looks bigger than us

Super daddy!

Pink cheeked sis in the hot hot unit without central cooling...

Me sitting in my same spot I was in with Owen 3 years ago. Memories of standing up to his crib to breastfeed him while he was laying down/not grab under his arms... Such a different experience with my lil mama's girl. 

Another reason we like Owen to get out of bed is so sister can get in his new clean bed and sit, roll, and laugh.

She loves to wave. Owen really wants to hold her and snuggle her whenever he can. 

We had a great dance party by the window today. Auntie didn't hold back!

Papa and Ara cuddling.

Holding Randis hand on the way home the other night. Girl can cry... All the way... Every night.... 

My happy girl will be home with brother soon. I can feel it!

The "H" bomb

I read back through our blog 3 years ago April when we were in this same room.... Transferred out of Icu yesterday. We talked about home as the team dropping the H bomb, ha!

I went to rounds this am as Wynt sat with Owen, and Chris went to a trailer supply shop to pick up something to unclog the black tank before his nap for the day. 

Rounds-

All is looking great. His chest tube output has decreased 20/25% each day and isn't cloudy which would indicate a chyle leak. He has been eating enough fat where that would effect it. Hopefully it will continue to decrease and come out tues weds. It's still putting out quite a bit, was 436ml 4/4 and 365ml 4/5. They like it to be close to 50 ml/day max.

Monitoring renal function and chest X-rays continue daily. X-ray also clearing up daily. He's on lasix, and a blood pressure med, and heparin still. Will come home on plavix, bp med, and lasix I'm guessing. We are using gtube for meds still, it's there so why fight the gags!?

They did drop the h-bomb as well... Fri/sat tentatively.... Exciting but hard to wrap our head around at this point!

He's sleeping now, Wynt is walking sleeping ara to get some lunch for us, and I'm going to nod off as well. 

The rest of the plan for today is to walk more, and poop hopefullly. 

As I'm writing this I don't think I wrote about him walking! Twice! Yesterday. The first time he walked to his wagon to ride to his new bed in the step down unit. I was filming and holding his hand and in awe also. He was upset because he likes his bed and wanted to walk to it even though we thought it would be fun to ride in the wagon. He walked about 8 feet unsupported. Then when we were on the unit he walked from the wagon to his new bed, much better and stronger each time. When he wakes up we will eat and get out of bed again. 

He continues to amaze us and act a little more like himself daily. Chris is somehow functioning pretty well despite continued daily naps ~4 hours and weird sleeping on and off through the night. Owens pumps beep a lot and wake them both up. 

Signing off from our old room where we spent a lot of nights 3 years ago. I held ara in here the same way I held Owen, asleep in my arms. Such a deep healing process going on here, taking years to come to fruition. At least for me. Maybe when I'm in it I'm so in it there isn't a lot of energy for self managing of emotions, etc.

Ok off to nap, love to all, awesome dog sitters and egg getters and goodie givers and ara watchers! We are so lucky! It takes a village!

Being goofy with thumbs up shadows

Quesadilla and kindle- what more could you ask for!?

So handsome, different color too. What a difference satting 97% makes!

Post op day 4

Randi and Dan came and helped a bunch, did laundry, put dishes away and vacuumed the trailer. When Wynt, Ara & I got home last night it was spotless! BIG thanks guys. 

Nana and papa watched Arabelle the other night so Chris and I could have some time with Owen together. It was very helpful although Ara was a bit overtired and gave them a harder time. 

Thank you for supporting us and hanging with Owen here at the hospital.

Chris & Owen are very sleep deprived. Chris's routine is to leave for the trailer in the morning when I show up with Arabelle. He gets back to the trailer around 10ish, eats, showers, sleeps as able. He has been able to get 4 hrs or so in of solid sleep daily. This is not enough but he is doing ok. I also only talk to him about 5 minutes a day so I'm kinda guessing as to what he does with his time. He told me yesterday he didn't get to sleep until 130 as he was on the phone with HR trying to secure his pto, vacation, etc. He was on hold for 25 mins and just had to get off the phone to get some sleep. He is probably taking 6 weeks off and getting that approved takes time. Hopefully Monday will bring shorter wait times. 

I have wynter here for 2 nights! She has aunt Kim and Brian watching the kids as Dave is in Israel for work. So grateful for my amazing sisters. Ara loves being worn by them and falls asleep in the Ergo with them. 

Marsh has been missing being here as the other grandparents have all visited and helped and had a part in our stay. She's coming for 3 days next week and scheduling wise it worked out better for us for her to come then. I know it's hard to not visit mom! Visitors and helpers are awesome and you will be so helpful when you're here. 

Court has come by too since she lives so close. Owen has really enjoyed his visitors. He tends to sleep when it's just him and I (like right now).

He had a good night, didn't get back out of bed last night. Ate some pancake and 2 pieces of bacon. Then needed to take 5 meds by mouth... Got gaggy and was battling losing it all. Poor dude. He fought it and won the fight once IV zofran was on board. Wanted that breakfast to stay down. Opted for using his gtube for his pain meds this time. we have come so far in not using it but it's there so may as well use it for times like this. 

Wynt took Ara out for a walk cause that sweet gal is a shrieker! Wynt is going to take her to courts today to hang out so Chris can have the trailer to sleep. 

I honestly don't know how each day's gears are going to work with the two kids, sleeping, Owen's status, but the days keep coming. The best thing is that Owen is doing well and improving each day.  This is the craziest thing I've done, having an infant who wants mama lots, and a 3.5 year old hospitalized. A husband functioning on 4 hours of sleep, and living in a toy hauler. Packing up each day and walking 15 mins from parking garage to his room loaded with diaper bag, pump, food, toys, etc. It's quite a dance but we are doing it. I can barely process what has even happened because we are so in it there's not a lot of breathing room. And that's just the way it is. 

We are so glad we have our trailer, it's so comfy and has everything we need, way more than a hotel would have. I learned I'm a pretty good water saver-quick showerer as I leave the water on the whole time and have never run out of hot water! 

I don't really know how to address the amount of love, support, prayer, and good vibes sent our way. We are beyond blessed in so many ways. And we feel it through and through.

I'm overwhelmed with emotion when I think about how many people have/had Owen/us in their thoughts, especially on surgery day. The strength of positivity and faith is so powerful in our lives, we are so lucky to be so connected to all of you and a higher power, whatever you believe.  

Here's a pic of my boy now, I'm going to get working on my next weeks schedule of helpers! 

Also if you have any questions you can ask in the comments and I can try to answer them next time. That will give me some structure for another post. Feel free I'm sure you've got questions:). 

Friday night is pizza night

At home we usually make pizza fridays and have a pizza night. Owen said pizza sounded good so I ordered it for him. 

It's been the quietest day here so far. Owen had Ativan on board to help with him getting a new IV, the cardiac line out, the pacer wires out, and his chest tubes out. These were done about an hour apart for various reasons. He also had a chest X-ray which was improving. He basically slept in bed from 1230-5pm. No drinking no eating just stoned and asleep. He would wake during the not fun procedures but was happily drunk throughout. 

I met their dietitian, asked for vitamins and a milkshake with fiber, and about his vitamin d level that was drawn. Sadly it was 13... Dang! It was 25 3 years ago and 40 2 years ago so I kept him on the same dose... Guess he needs more. Fooey mama! (Normal low is 30, but 50 is better.) he's on it now, but I think it's the same dose as home.

Since he was in bed all day we got him out while he still had some adivan on board. It wasn't quite as crazy getting him out if bed as he was down a few tubes but it is still a multi person ordeal. He even stood up a few times and sat back into his recliner.

Progress

Owen has had a pretty good day. He's eaten bites of his favorite foods, watched lots of Tom and jerry, stood up 2 times, got smaller chest tubes, was out in chair for most of the afternoon, and labs looking good. Tomorrow there is talk of taking out 2/3 chest tubes, arterial line, pacer wires, and IV that can deliver medicine straight into his heart. 

Things to with on:

Strength & anxiety with standing, moving, coughing 

Fluid balance with intake and output

Pain, pain meds, po intake, and pooping

He really is blowing me away. I can't be olive 2 days ago his heart was stopped and the heart lung machine took over. 

His surgeon came by again today and said he looked great. This is the best news ever and means we will likely transfer out of ICU tomorrow. Bring on the small shared hot rooms- we want to improve and heal!! 

Much love to my helpers today, Chris got some sleep at the trailer. 

Ara napping while Owen was in the heart rest.  

Amy one of our faves!