11.07.2019

love life!

so much to be grateful for.  so much about life to love!


JAMES:
loving the dental hygiene we have to do with sponge swabs
finally doing tricks on command: shaking head "no", bye bye waves and clapping hands
lights up when we read a book
thinks hazel and cora are the most hilarious
has 3 new teeth that came in all at once overnight
loves ground-up grilled meat and yogurt
obsessed with balls

CORA:
saying "what the heck-oats!" and other things that just crack us up
cutting up post-it notes to make "money'
writing "letters" to people and mailing them
drawing people with crazy hair and long eyelashes
wearing her sister's clothes (they're the same size now, so it's all shared!)

HAZEL:
full of curiosity about the world and always asking questions
her best friend kylie and her new school
reminding me every. day. that she wants to go to scooter jungle for her birthday
building legos
throwing paper airplanes

MOM:
playing pubG at night with John
dreaming up renovation plans
not having to cook dinner 'cause mimi is in town

JOHN:
having yummier dinners because his mom is in town
stealing nerds from the girls halloween haul

11.01.2019

halloween 2019

Hazel insisted on being a unicorn this Halloween.  We all followed suit.




click here for: Costumes of Halloweens past 

just me and my unicorn baby


obsessed.
repeat after me.  you do not have a favorite child.  you do not have a favorite child.  you do not have a favorite child.

10.21.2019

james got a new heart today

It's a weird thing, the day/night before you go to the hospital.  It seems like you are savoring every second, just in case.  Savoring every little thing he does, and in disbelief about who you're about to hand him over to.

So grateful that everything turned out okay.  I am writing this now, 2 and a half weeks post discharge with a baby boy that is sleeping with a "fixed" heart.  I pray he won't need further intervention in his life, or at least not much of it.  

Morning of surgery:  Stressed out parents, blissfully unaware baby boy hopped up on Versed.

The photo I took as they wheeled him off.  I did not stop crying for the next four days.

 This is one of the first photos I took on that day.  Poor baby boy.  He was extubated in the evening.  


This is the photo we sent friends and family, with this message:

James is stable and out of surgery.
All the details for those that want them:

The surgeon did not use a conduit, which is wonderful news! Bad news is the pulmonary valve was not functional. He was not able to spare it. So James will need a valve put in at some point. Dr. Starnes thinks around age 8-10.

James is very sleepy still from the anesthesia. Goal is to slowly wean him off the ventilator and take his breathing tube out sometime this afternoon or evening. He is on one heart medication while his heart adjusts to his new anatomy and will gradually be weaned off of it. All normal.
We are so grateful for a good outcome so far. He looks peaceful right now, which I am grateful for. Thank you and keep those prayers coming.



That evening's update:

Breathing tube out. After they took it out they sat him up and he cried like I’ve never heard him cry. So sad. He is in pain and hungry but being so brave! Sucking on his binkie like there’s no tomorrow. Praying for pain control tonight, as I’ve heard the first 24 hours are the worst.
His vitals are looking normal for someone with a recent TOF repair. His heart rate isn’t as elevated, and the venous return in his heart is still a little low but looking better.
Spoke to the cardio attending who thinks James may not need a valve for many years (good news!) but time will tell. I’ve been so impressed with CHLA! The whole team is wonderful and quick to respond to our concerns, to James, and help him progress along.

Overwhelmed with gratitude for the many prayers we have received. Thank you for being on James’ team. I have received so many texts, messages, and words of encouragement. If I didn’t respond back, just know I am grateful and that you have bolstered me up today, doing something I truly didn’t have the strength for alone.
Most importantly, we are so grateful for our Father in Heaven, who truly answered our prayers with miracles today. He is blessing James perfectly and we need only trust in Him and His plan for each one of us. God is good and loves us all so much.

8.08.2019


Been meaning to post this for forever, but life got in the way.  A couple things.

Island Park was a dream. One of my favorite parts was floating the snake river with my people. Behind us is Sawtelle Mountain, where John asked me to marry him. It’s wonderful to go up every year and tell our girls that story. I think about those 9 years since and know that we are so incredibly blessed. It’s hard to realize all the good when you’re in the thick of tantrums and trials; helping these little people through their individual challenges, but they are such a joy in our lives. I have been thinking about what a sacred privilege and blessing it is to be their mother. Nothing comes close to it. If nothing else, James’ diagnosis has given me a clarity about what is important, it's our family, plain and simple.  That $300 it's going to cost me to register my car?  NBD.  

It's a perspective I pray will never go away.

Also, we bought a house.  It was a stressful thing.  It's not our dream home, but it is a dream having our own washer and dryer, another bedroom and bathroom, plus so much extra space!  Now to pray the market keeps rising (as it historically over the years always does, especially in LA).  With this comes a ward change (even though we only moved about 5 minutes south), and a school change (which has been hard on Hazel, but she's been rallying!)  I am just so grateful for our Father in Heaven always watching out for us.  Another thing I'm learning is if I didn't have the knowledge of Him lovingly watching and guiding us, I think I would collapse under the pressure of 'what ifs".  Adulting is scary, especially when there's risk involved. 

And that's where John comes in.  What would I do without him?!  When I'm spiraling, he just helps me stabilize.  It's like his superpower.  Anxiety creeps in constantly these days, with all the change and James' heart.  John talks me down, always.  

And melatonin helps me sleep.

7.10.2019

I realize I am so very blessed to make the following statement; but here we go.

Sometimes I forget that James has a severe congenital heart defect.

I will go about my regular life, complaining and worrying about the most insignificant things.  The days seem normal, really.  And then, it knocks the wind out of me as I look at him and suddenly remember that he has a lifelong illness.  That he will need, at minimum, one life-saving open-heart surgery.  And as much as I fight against the thought, I know that this is not something that can be fixed and I will never have to worry about his health again.  I will always worry.  Even if his correction goes as planned, we will always be waiting for the next shoe to drop.  This is a lifelong challenge. 

The crippling anxiety at what he is going to have to endure and go through sets in.  And those petty thoughts I was just having about my girls refusing to eat their dinner don't seem quite so important.

I am grateful for the newfound perspective.  I am broken for all those wonderful moms and dads that are waiting to be reunited with their angels in heaven.  I know that we are one of the lucky ones, and that there are families that are even luckier than us. 

When we chose to come to earth, we knew that the heartaches of mortality, including imperfect bodies, was part of the deal and would be well worth the pay day.

Elder Holland sums up my feelings pretty well:

"There is no shortage of suffering in this world, inside the Church and out, so look in any direction and you will find someone whose pain seems too heavy to bear and whose heartache seems never to end. One way to “always remember him” would be to join the Great Physician in His never-ending task of lifting the load from those who are burdened and relieving the pain of those who are distraught.
Beloved friends, as we unite across the globe each week in what we hope is an increasingly sacred acknowledgment of Christ’s majestic atoning gift to all humankind, may we bring to the sacramental altar “more tears for his sorrows [and] more pain at his grief.” And then, as we reflect, pray, and covenant anew, may we take from that sacred moment “more patience in suff’ring, … more praise for relief.” For such patience and relief, for such holiness and hope, I pray for all of you"