No more Mrs. Nice Gal...

Well we waited all week to hear from Ucsf. No word. I got impatient and emailed Rivera today, 4pm on Friday afternoon. (Aka the black hour when nothing is going to happen...). 

He responded with "You should have been called by now..." And then later: "You will get a call Monday, they are out of office now..."

So... I thought they were busy, or we were sitting on someone's desk, but I think some communication was missed. A week gone by without surgery scheduled.. We will *hopefully* know Monday!

Next time I won't be so nice as to just wait it out.. It's not like we have any planning to do!

In other news my sprouts were yummy but my sourdough starter had some mold on the side of the bowl so I decided to ditch my pet I'd been feeding for a week. Oh well!

Home Days

I love being home. I used to run all around, have 2 jobs, go to 2 schools, pack in my schedule like I had something to prove. That is just not my style anymore!

I know the season is coming where kids will have school, activities, etc, but for now, I love home days. I rarely feel bored, and there is always something to do around here. We spend a lot of time outdoors, playing in the dirt or sandbox, or going on walks.

Ara had her first wagon ride around the property.

Owen had his first potty break on the property, ha! I knew he would need to go so I just brought it with us in the wagon!

Happy kids.

Sheep photo-bomb!

In addition to being enthralled with my children and anything they do, I enjoy 

completing little projects that are easy to do quickly when home. Things that don't require much time/focus/energy... Usually something in the kitchen. 

Shari got me a seed sprouter for Xmas in 2012. I got pregnant soon thereafter and had always known sprouts (usually out in the world) were a highly perishable food and more likely to cause foodbourne illness if prego or weakened immune system. So it sat in the garage. Call me careful but I will avoid GI upset like the plague!  I finally used it to make some mung bean sprouts, so yum! I'm going to share with the chickens today, I made way too many. All you do is water the seeds once a day.

I have also had a sourdough starter packet for a long time, maybe a year... I read the directions and put it away, as it seemed too labor intensive!! You need to feed it! Another mouth to feed, no thanks! Well something possessed me to give it a go last week and I think it worked. It really only required daily feeding after the first day of feeding twice. I'm going to make my first sourdough loaf in the next few days. 

Working on a plan

Owen is doing better after an exhausting 2 weeks. He is still showing signs of medical trauma so we are seeing child life in Roseville to work through it and prepare for what's to come. I guess it is really common in kids his age and per the child life therapist they adapt. Something must have set something off in Owen, having worry and new fears about his body. Hopefully we can see some improvement before we go back to SF.

UCSF rounded on Owen yesterday and contacted our local cardiologist who was in agreement with their findings, that the right ventricle wasn't going to do much, and that Owen is in need of the Fontan surgery. This was expected news for us, after the cath that was what was shared as the likely plan. 

There is no urgercy on the medical end, however on our end we are feeling some urgency. There is a lot to prep and plan for, and our babe is developing quickly. She rolls all over now, and will be sitting soon (if we ever set her down, ha!) these challenges we will face regardless of when we move to SF for a bit, but I feel it would be easier on all of us the younger Ara is. 

So we have reviewed our schedules, made lists of what needs to be done, and we wait for Ucsf to call us. 

Owen had his second Heart surgery 3 springs ago. It seems like forever ago! 

Owen still loves monster trucks:).

Recovering..slowly...

Due to some phone technical difficulties I do not have any pictures to upload of Owen, but here are some of our 4 month old happy girl. She is getting lots of love around here, and developing more each day. She is giggling lots, especially at the whoopie cushion. She moved into her own room when we got back from SF and she is following the same sleeping pattern. Usually down at 8, wakes a lot that first hour, then sleeps until 1,2, or 3. Then she hits the crib until 5,6,7,8 or any combination of those! She is a pretty easy going gal.

Owen on the other hand, has had a really rough go. He has had nightmares/night waking every nice since we came home. He is pretty inconsolable, which started at a 15 minute episode. He has shortened the time of these episodes but have happened every 2ish hours since we have been home. He says sweet things like "I'm getting better, I'm feeling so much better" during the crying fits.

The night before last he said "Get these things off of me". I have spoken to the social worker at UCSF who specializes in trauma after seeing so many kids be affected. She said especially with the Fontan procedure kids have issues that are lasting at times. She said it happened quite commonly, and since he is already showing signs of PTSD on some level that she thinks intervening now would be a great idea to minimize further torment on his sweet soul!

His site looks good, and he still has a low grade fever at times. He is acting mostly normal through the day besides being exhausted and not napping much. We are heading to take his first submerged bath tonight and played out in the yard today looking for worms, his favorite activity.

I am somehow functioning well today. I have had some help from family and friends and I think that as well as the good vibes, juju, and prayer that is sent our way is keeping me functioning on very little sleep. One night I saw every hour on the clock! Last night was better I slept 10-1, then 5a-7am. Hoping for even longer stretches tonight, I REALLY feel for parents of twins or people who do not have family around. LUCKY LUCKY!! 

Home Sweet Home

We made it home close to midnight. Owen's discharge was slowed by a chest X-ray, and a random rash. His skin is so sensitive that he's allergic to any tape used on the skin... And apparently the cleaner they use on the skin. 

After I posted yesterday it got harder, as Owen was recovering and needing to lay flat and still. He was not happy at all. His demeanor improved a bit with a steady flow of saltines "salty crackers" but overall he wanted everything off and to go home. His first words awake were just that... "I want to go home." 

It was quite interesting having Ara as well. Chris left for 20 mins to get us lunch and it was busy! She was rolling around on one side of the bed and Owen needed reminding of his leg frequently. It all worked out but our hands were full. 

They were great on the way home and Chris slept with Owen last night. Ara & I slept 12-5 so that was pretty great! Been a while since I've had a 5 hour stretch.

Owen woke with a fever 100.3 and itchy from his reaction. He's been on benedryl and tyelenol today and taken a few naps. He is supposed to lay low for a week but when the meds kicked in towards the end of the day he was playing more. 

I wanted to share 2 other team Owen race pictures:

This is Alyson and her son on a hike at Folsom lake. She was my midwife with Owen and through ara's pregnancy. She joined our team too!

This is Wynt's garmin... Pretty quick that gal! She did her half marathon in spurts but did it so quickly. I think my half marathon took about 4 hours. 

Overall this roar and run virtual 13.1 was so much fun. I am already looking forward to doing it again. 

The team roster gives me chills! Of those who signed up I have met half of them... My friend Stephanie recruited some of her friends and they all signed up! Super sweet! 

On the fundraising note... This is amazing... And brought so many people together... My goal was 200$ which I thought was pretty high. Check out this screen shot..

Thank you to all of you who support us, in texts, comments, blog visits, calls, emails, running, jumping rope, making meals, toy donations, fundraising, spoils for us all, toy deliveries for Owen, love & affection, laughter and hugs. (There was no way to make all those verbs agree... There are too many good ways people show their love!) & We heart it all!

Cath results

We had amazing accommodations at Jamie & Eric's home with a delicious lasagna and salad dinner last night. We had a little difficulty settling down and probably fell asleep around midnight. Ara woke at 230 then Owen woke at 4. Guess he just wanted to snuggle us until 545 when we planned on getting up as none of us fell back asleep!

Got admitted and up to a room fairly quick. The resident came in and chatted with me about the procedure while 4 RN's tried to get an iv into Owen. Chris was helping hold Owen steady. The sedatives started to take affect but he was still sad about it. On the 3rd try they got an iv thank goodness. 

He was so sleepy from meds and being up early. He was pretty loopy. The awesome RN's let us come into the cath lab like last time. We've seen many familiar faces and one RN even took Ara around the unit enjoying some snuggles. 

Chris carried him down to the cath lab and Owen was enjoying looking at the fish stickers on the ceiling. He asked to touch them haha he thought he could. He called them sharks too but that was the drugs talkin. They used his gtube for the nasty tasting ones so I'm glad it was there. 

We said our goodbyes after some laughs with the nurses. Thank goodness Ara was sleeping on me in the carrier for almost all of this.

By then it was 930 and we headed for some breakfast and caffeine. Thanks mom for the bucks gift card! Went to the car to attempt to sleep. We mostly texted, rested, and tried not to think of the actual procedure. 

They gave us a pager and it went off 2 hours into the cath. They said they were going to coil off 2 arteries, the right and left mammary arteries. They basically put a metal coil in to plug it up. With oxygen levels in the 80's like Owen, he has a tendency to adapt and grow extra vessels to help out a sub-optimal setup. He also makes more red blood cells to attempt to carry more oxygen. This adaptive measure can actually hurt him as it leads to elevated hemoglobin and hematocrit levels which increases his risk for stroke. Taking his daily aspirin helps but living like that isn't optimal. 

So... If his heart stays the same...

1. He will continue to have saturation levels in the 80's

2. He will continue to have a higher risk for stroke

3. He will continue to be somewhat limited/short of breath on exertion

The cardiologist who completed his cath came and talked with us. He said his heart overall looks great but the right ventricle is pretty useless:(. We figured that was the case but we were hopeful it would be able to help him out. Owen is a good candidate for the Fontan procedure and Owen will be brought up in rounds the next week or two. Since it isn't emergent it can be up to us a bit as to when to schedule it. 

We asked many questions about the Fontan, Fontan patients, etc. Dr. Tietel said that all of the surgeries that O has had are bridges to transplant. They all buy time. The most common question we get with O is "Is this his last surgery"? So the answer to that is yes, but the next line after that is transplant. The better the candidate the longer the Fontan can last. 

He is sleeping off all the drugs and hasn't really moved or made a peep other than little snores every now and then. Ara is sleeping on me and she has done well minus a screaming session in the car. 

Being here brings back a lot of memories, good and hard. Chris and I have been laughing reminiscing about some things we'd forgotten about. 

That's all for now. Hoping to go home after he wakes, eats, and recovers. Probably won't be until 8/9pm. Thank you all for the positivity sent our way. We feel it.

Tomorrow is Cath day

We have the first case so we will be getting admitted at 645am. Probably be taken into the cath around 9. I spoke with one of the docs and he was very thorough. I even asked him about Owens's chest rash he has had since his original EKG 3 weeks ago. He said they wouldn't monitor him prior to the cath since they have 9 recent hours of heart monitoring on record. So less time with the stickies on his chest. It seems like a minor thing in comparison to getting a cath but his sensitive skin stays irritated and itchy for weeks. 

Thanks to cousin Bryce for holding down the fort. We have the best neighbors who also keep a close eye! Not to mention our 150 pound Great Dane security system, ha! 

Hoping for a safe, quick, and informative trip. Thank you for all the positivity sent our way.

We will be spending the morning packing, and updating an appliance. Our washer took a dump and to replace the parts is 200$. It is 10 years old so we decided to get a new one. Chris is picking it up this morning. A few days without laundry services is really all we can go!

Running Progress

The roar n run virtual 13.1 is underway... I finished mine today! Mine was a culmination of elliptical, running, and walking. 

Team Owen is doing great! Here are some pix from the week long half:

Michelle ran 5 miles on her treadmill in her garage while her babe was asleep!

Wynt, Ara, and I went for 3.6 around her hood. It was my first real run since August!

Today we had paper hearts and wore red and attempted to go pretty far to finish out the race!

The kids even did amazing for hanging in the strollers so long!

The final 5.1 miles in the race!

This sweet woman is a friend of a friend who was inspired by Owen:). Wahoo for running for awareness!

This was the run with Wynt and Ara!

What a fun virtual race! My kinda half marathon to do it over the course of the week and with friends and family to boot!

Running Day 2

My friend Stephanie is very fit... She decided to do the half marathon all in one day! She is super amazing and I'm so sad we've lost touch through the years... I have a feeling we will reconnect in person sometime! Wish I could have ran with her and her friends today, but I am not sure I could have ran 1 mile at their pace!!! Here are some awesome photos she took!

She made a race bib! #1540 since every 15 minutes a kiddo is born with a heart defect in the US, meaning ~40,000 per year. You rocked it mama, and we all appreciate your support!

13.1 Roar n Run Progress

I logged my miles last night on the elliptical.

A friend of a friend ran 8 miles under Team Owen!

My girlfriend Michelle was running in her garage last night!

Aunt Kim has been walking 5 miles almost daily, and another friend was planning on running the whole 13.1 today in the weather... Haven't heard from her yet! 

Many thanks to all for raising awareness and funds...the fundraiser is really amazing me, getting donations daily. Big love to all our awesome supporters!!

Tele monitor

Well the 24 hour monitor lasted about 8 hours before Owen started reacting to the stickers... Itchy redness... The doc said we could take them off... 

We thought this may happen as he broke out after his EKG lead stickers for a week. We gave him benedryl to help with the reaction.

Owen has been getting over a cold he caught (likely at our all day doctors day...). He shared with me and I unfortunately shared with Ara. 

We're not at our finest... Owen has been asking to go to bed/naps which never happens... Ara even has some teeth barely poking out which isn't making her feel any better. 

Hopefully next week is a better story and Owen will be in great shape prior to his cath. Or we will reschedule. 

Stay well out there!

Congenital Heart Defects Awareness Week

2/7-2/14 is CHD Awareness week. This week I'm doing a lot to raise awareness. I have a fundraising page for Mended Little Hearts, running a cumulative virtual half marathon, and finishing the week with going to SF for a heart catheterization for Owen. 

As I was writing this blog in my head last night (while up multiple times with Ara...) it sounded more eloquent than the words are coming out after a disjointed night of sleep.

I wanted to briefly share our story, but there is nothing short about it. Our first babe was born with a heart that would never function the way mine does. He was a planned pregnancy from 2 healthy and unsuspecting individuals. When we first found out I was shocked that he wasn't healthy and so naive about the statistics. About 1/100 children born have a heart defect. I know 5 in my personal life and countless that I have met in our adventure with Owen, so the stats may be true in your life as well. 

Cheers to Owen, who has endured much more than he should, to thrive as a toddler. May his future procedures & surgeries only make him stronger and allow him to continue to enjoy life. He is truly a blessing and we love him with all our heart!