Faith

Yesterday morning Jeremy and I showed up at the hospital for rounds just like any other day.  Except this day was different.

As soon as we walked into Knox's room we knew just by looking at him what was happening: He was NOT getting better.  He wasn't even staying the same.  Unless something changed, he wasn't going to make it.

It's not like he drastically changed overnight.  For the last week or so, Knox has very gradually gotten worse.  Every day he gets a little bit puffier, puts out a little less urine, and breathes a little bit faster. Yesterday was no different, but something clicked in our hearts and minds that morning.  If we don't do something Knox is going to die.

After rounds I spent some time alone with Knox.  I held his hand and stroked his hair as usual.  And then we had a conversation.  I told him that I love him with all of my heart, and that I want him to be happy.  I told him that I wouldn't be angry with him if he wanted to give up.  I told him that no matter what he chooses I would do my absolute best to make sure he gets what he wants.  Then I asked him if he wanted to go Home.  I asked him if he wanted to stay with mom and dad.

And when I asked if he wanted to stay he squeezed my finger. so. hard.

Understand that this kid is not mobile.  He is so puffy that he can barely move his fingers right now, let alone squeeze.  He also is on more sedation than he was a few days ago and has been sleeping almost all day and night.

Now I know this might seem silly to some, or just a coincidence, but I know in my heart that Knox was trying to tell me something.

But, what could we do?

We went about the rest of our day in tears.  Racking our brains trying to find some way to help him. 
He is now too sick for a transplant, and for the surgery I mentioned in our last post.  He is too small for dialysis, and ECMO (the nasty bypass machine that he was on before) is too risky at this point.  It seemed there were no options left. 

Then I got on my knees and I prayed. 

I didn't pray how people pray when they are at church or in public and sound all refined and collected.  I prayed like a crazy person.  I sobbed and sobbed and eventually ended up on the ground in a ball.  I can't really tell you what I said because it was more like an incoherent jumble of words and thought that only makes sense in my head.

And then we got a phone call from the doctors.  They wanted to meet with us.  They said they think they found something.

Right Ventricular Assist Device.  A little machine that does what the right side of the heart is supposed to do.  It will basically bypass the leaky valve and do mechanically what the surgery they were talking about previously will do permanently.  Their hope is that this will allow his heart to pump strong enough to get blood to the kidneys and help them to get rid of the fluid.   When the fluid is gone then everything else in his body will work better, and in a few weeks he would be well enough to get his surgery.  If this machine works it will also be a good indicator that the surgery they had planned for him will also work.

Of course there are risks.  He might not tolerate the process of getting hooked up to the machine.  They might not be able to get the machine hooked up.  It might not work.

The biggest risk is that this hasn't really been done before.  These devices are meant for the left side of the heart, to help patients hang on while waiting for a transplant.  The doctors couldn't even find medical literature to support using this machine in this way.  We are operating on the skill and knowledge of our surgeon and doctors, and mostly on faith. 

But, its something, a last resort, and if we don't try it he won't have a chance at all.  So this afternoon Knox will go to the operating room for his last fighting chance.  It will either work, or it won't.

Whatever happens, we know we have all tried our absolute best to help him. 

The never ending saga of Knox's heart

"If you are born with a heart defect, this is the one to have."

I can't count how many times we have heard this sentence since Knox's initial diagnosis. Everything we read about his condition was pretty straight forward. Transposition of the Great Arteries: 95% success rate, pretty quick recovery, normal life after the procedure. In. Out. Done.  


And it's true.

The only problem with prenatal diagnostics is everything is so small that it makes it difficult to get a good idea of what is really going on.  By the time Knox was ready for surgery the doctors identified some additional problems with his heart.  He also has a Ventricular Septal Defect (VSD), an aortic arch that curves to the right instead of the left, and mild regurgitation of the tricuspid valve.

While none of these things alone are a huge problem, the combination has created a problem that can't be fixed easily. The type of Transposition he has (D-TGA), along with the patch they had to make to close the VSD pulls on his tricuspid valve in such a way that his regurgitation (the leakiness) has gone from mild to severe. And that is the cause of all this fuss.

One Stupid. Little. Valve. A valve that is too small to be replaced (he would have to make it to 5 yrs for a replacement), and too complicated to repair. The doctors have essentially scanned his entire body (and continue to do so), searching for  ANYTHING else to explain why he can't tolerate the leakiness (most babies don't have a huge problem and grow out of it) but have found nothing.  They are completely stumped.  


About two weeks ago, Jeremy and I had a conference with all of the doctors involved in Knox's care to discuss a path forward. The only solutions we can come up with (so far) are to bypass the valve completely (essentially living with a 3 chambered heart), or get a heart transplant. (Of course, there is always the hope that he will miraculously heal to the point where he wouldn't need any procedure at all.)


In order for him to be considered for either of these procedures he needs to be at least 3 months of age, and hopefully get a little healthier during that time (due to the medications he's received, the trauma from his surgeries (he's had 2 so far), and the passage of time in the ICU, his kidneys and lungs are getting sicker).  


The doctors have now told us that the chance of him not making it is greater than the chance that he will make it, and although they haven't given up hope, have officially given us the right to say enough is enough, if we feel that Knox has been through enough.  Heavy stuff.


So the question is, where do we go from here?


For now, we wait.  


We wait until July 24th and see how he is doing.  We wait to see if he wants to stay on this earth, or if he is ready to go home.  And in between the waiting?  We pray.  We love.  We spend time together.


And we don't take for granted one single second that any of us have on this earth.

On the night you were born

For a while now I've been contemplating how to write our birth story.  I could go over all the tangible details.  I could describe my short, yet intense 4 hour labor.  I could talk about the fact that I didn't get an epidural until I was 10 centimeters and had to sit hunched in a ball for about 45 minutes with Decker fully engaged and ready to go.  I could explain the point at which Knox decided he was going to be the first one out and tried to push Decker out of the way, or the point at which both of their heart rates dropped severely and I almost had a c-section, or the point at which, once Decker was out, Knox decided to flip around breach and my OB literally had to shove her arm up "there," grab him by the legs and pull him out (good thing I got that epidural, right?).

But none of that would describe what really happened, or the important part at least.  That indescribable and overwhelming joy that surged through me as I gazed my sons for the very first time.  The joy that only other parents can relate to, the joy that you can never really describe in its entirety to others that haven't experienced it.

This excerpt from a children's book is the closest thing I've found to explain what really happened the night of April 24th:

On the night you were born,
the moon shone with such wonder
that the stars peeked in
to see you
and the night wind whispered,
'Life will never be the same.'

Because there had never been
anyone like you...
ever in the world.

Heaven blew every trumpet

and played every horn,

on the wonderful, magical,

night you were born.

Catching Up

Almost 2 months after our boys were born and I'm finally getting back to blogging. Hello again :)

The last 2 months have been a crazy, intense whirlwind. Time seems to drag on ever so slowly, yet also slip through our fingers like water. Over this stretch of time we have:

-Given birth to our totally awesome, adorably hairy boys, Knox and Decker

-Moved from UW Medical Center (where we lived for almost 2 months) to Ronald McDonald House

-Witnessed Knox go through 3 surgeries, a week on ECMO (a super nasty and dangerous, but equally helpful bypass machine), a nasty infection, having his chest closed only to be reopened again a few days later, and a whole lot of other stuff in between

-Watched Decker go from itty bitty, snuggly newborn who can fart louder than either of his parents, to not so itty bitty, but equally snuggly 2 month old who can STILL fart louder than either of his parents ;)

Wow.

What. A. Ride.

Obviously this barely skims the surface of our last two months in Seattle. My hope is to catch up on all the posts we've been meaning to write, so that we won't ever forget the details of this crazy, scary, beautiful time in our lives.

I suppose the most natural place to start is where we left off, the night the boys were born.

Stay tuned...

37

As I erase the "36" on the whiteboard in front of my bed and replace it with "37" today I can't help but shout: Hallelujah.

37 weeks.  We made it.  After a preterm labor scare, lots of bed rest, broken water (baby a's water broke mid-march), and some divine miracle we now have two FULL TERM boys.  Hallelujah.

The Zohntastic twins are now over the 5lb mark, which means baby b will be big enough to have his heart surgery right away, and they shouldn't need any NICU time or have any other problems associated with preemie babies. Hallelujah.

Jeremy and I made it through 7 weeks of spending (almost) every waking hour in a little tiny room together without killing each other.  In fact, it has drawn us even closer.  We now know we are strong enough to get through anything together, even what lies ahead of us.  Hallelujah.

In the next week or so we will have two rambunctious, tough, amazing little boys to teach, to hold, and to love.  Hallelujah, Hallelujah, Hallelujah.

Amen.

34 weeks and then some

34 weeks, good stuff, not quite to the 5 lb mark our Dr. said was the goal but not too far away at 4.4 and 4.2 and that was as of last week. I visited Children's Hospital yesterday and was really impressed, we've heard they do amazing things there and it shows. We have had some amniotic leakage, it appears to be coming from baby A and are waiting things out, if things continue as they are, and we do get to 36 weeks, we will be looking a induction etc. Just a heads up to quick everyone.

33 weeks

Spring in Seattle has got to be on of the most beautiful places on earth, and we are so appreciative of it. Jen and I get to have two 1 hour wheelchair rides around the hospital campus and we've been using them to suck up vitamin D when available and get some fresh air. We had an ultrasound this morning and the twins are now 4.2 lbs and 4.4 lbs respectively thats almost 9 pounds of baby etc. way to go Jen! The love and support our friends and family have shown (not to mention hospital staff) has been amazing. Here are a few photos of our little hideaways we've found on our outings.

Perspectiving

A shift in perspective can teach you a lot, it can open you up to something new, confirm or refute a theory or opinion, or straight up put you on your butt wondering where the rug went.
     This last monday I  loaded up the babywagon and filled her with gas to trek the pass over to Seattle after Jen's workday. We would be meeting the head of the OB department at the University of Washington hospital, getting in- depth ultrasounds and echocardiograms, touring facilities, visiting Childrens hospital where baby B would be getting his hardware upgrade.
     Things went very well, babies the same weight, B had flipped and we were inspired by the news that should things proceed as they were, we would have the opportunity for a vag. birth, so important for us because of the recovery time for Jen and need to nurture two babies in two different places (baby A here at the U hosp. and baby B at Childrens). The last thing the Dr. did was check Jen's cervix which was found to be 3 cm and fairly soft. This being our first children and knowing that the longer those babies had to grow and develop the better for an impending surgical outcome, we knew this was not the best news.  In twin gestation it isn't uncommon for the mothers Uterus to be agitated, at 30 weeks, our boys are a total of 7 pounds, and Jen is not a very big person, this as well as other unavoidable factors had put us in a pretty freaky spot. Normally twins coming early is somewhat common and just requires a little incubation time, for us it means that the time between birth and being strong enough for baby B's surgery means a measure of time that his heart would be running basically backwards and creating muscle memory and heart growth opposite of the way it would need to run post operation, the longer the time, the more possibility that there would be complications later in life as the heart that started out wrong struggled to do what it needed to after being fixed. Not good.

On the way to the U hospital we hooked up some Burgermaster! (Tom and Jerry shakes ftw)

   At this point I'd like to just stop and say that the medical attention we have received could not have been any better in any way, without boring details that would fill pages and pages, this hospital is literally filled with angels.

     After we were checked in we learned that Jen was contracting once a minute very consistently, more not very good news. The staff quickly administered magnesium sulfate to relax all Jen's muscles and some steroids to help the babies lung development in the case they did end up coming early. After 48+ of nail biting and meeting all the teams that would be involved in the birth-transfer-surgery-recovery, everything has calmed and returned to "normal".  Now we get checked twice a day and are doing absolutely positively nothing.......................................................which is  much preferred to hey here come your babies. It looks like we will be here in Seattle until the babies are born, which in ideal circumstances wont be for  another 7-8 weeks, add a month of recovery for baby B and we won't be back home to the tri-cities for quite some time. We have had visits from sister Sara who made these

and from friend Wendy Lee, deeply needed conversation with Pastor Matt as well as many a digital encouraging word from many others, thank you thank you thank you. So in simple summary our life has gone once again from crazy to supercrazy-insane, and now, for the first time in what seems like forever,  watching the grass grow and river go by slow. It is a rollercoaster that opens my eyes everyday to the power of love and the depth of care that humans can give to each other, what grace is, what patience can be and the power of God to show you how small you are and also how much you matter. 

Showering babies, Zohntastic style

People amaze me. It’s definitely a testament to the depths of human compassion that makes a celebration like a baby shower possible. Last Saturday, we experienced love from family and friends, manifested all at once, hopes, and best wishes, dedicated to the yet born. Jenifer's sister Melissa (as well as the rest of our family members) did a great job of putting everything together, a lovely historic punch recipe from the hearts and creative minds of the Ross family. A gooey bake-a-thon from Chloe, Brooks, Molly and Emery. Gifts, decorations, well wishes and welcome advice from loved ones, some new, some from what seems like forever ago. Preconceptions I had held about what this "girly" celebration called a baby shower lasted about five minutes, and quickly was replaced by the comfort and encouragement that only those closest to you can provide. Thank you immeasurably to anyone and everyone who was involved. 


-Jeremy

P.S. On a personal note, it was suggested and I fully endorse the idea of a "man shower", scratch that, a dad~dude celebration of impending parenthood. I wonder what that might be like?

P.P.S. Photos to follow. We just discovered our memory card reader is broken.

Sappy love stuff

Hi everybody I'm Jeremy.

"Hi Jeremy."

Id like to welcome anyone reading this to my first BLOG POST woowoo! I was shamed into contributing to this discourse on our trials and tribulations by my miss Jen.

I have held off of participation because:

1. Jen is really good at writing.

and

2. I wasn't really sure what I could offer about us that she can't share in a far more eloquent, organized, and beautiful way.

Upon reflection I decided that befitting the holiday today I'd tell a little (or maybe alot) of my side of how we got here and maybe figure out where it leads.

Love.

Since this is about us, and it's Valentines day, I better start with that.

I know that when I met this quiet, seemingly shy (you guys have no idea) smart and oh so nice to look at person, it was like a napalm bomb. Not in a sexy way, although not in a not sexy way, its better to describe it like if all the beauty, adventure, schemes, and dreams I could of ever imagined in life were doubled, or quadrupled (what an awesome word) and then strapped onto an enormous solid fuel rocket and then if all of that was taped to a rollercoaster with wings.

And us with the matches.

Many of you have been a witness in some part to these proceedings or participated in them and I am glad for that. Without our friends, our family, or our silly beloved dogs I'm sure we never wouldv'e been able to hold it together. It has been Awesome.

And now........

First comes love

then comes marriage

then you wake up with a tattoo on your face under a table in a bar in Sri Lanka.

Babies! Babies? ieeeeees!

Whats a baby carriage?

How do you do this?

Over the top!

Two!

Two?

Two.

Holy crap! How in the world could things get better?

Sons,

two sons.

Love

Love Letter

To the man that stole my heart when I wasn't even looking...

The one who tells me I'm beautiful every day, rubs my back when I'm tired, and holds me when I cry...

The one who knows me better than I know myself, always lifts me up, and makes me forget my sorrows....

My partner in crime, my confidante, and my best friend...

You rock my world :)

Love,

The girl you fell in love with almost 7 years ago

Of ultrasounds and baby hearts...

As some of you may know, Jeremy and I received some interesting news last month. We are finally ready to share our story with the world...

On January 5th I had my 20 week ultrasound. Jeremy was out of town for work, so I decided to invite my sisters and my mom to tag along with me, hoping they could witness the epic boxing match in my belly :)

We were all excited as we walked back to the exam room. The ultrasound tech slathered my belly with that cold, sticky goo and went to town. Boy were they kicking! And yes, they were still boys (I was hoping for at least one girl) :)

Everything was going great...until the tech got to baby b's heart. She started talking with the specialist that was present, using all kinds of technical terms. I had

no idea what was going on, but had a feeling that it wasn't good. They spent a lot of time looking at his heart. Eventually I couldn't hold it in any longer and started crying. They finished shortly after and we were all invited into the specialist's office.

I don't remember much of what happened after that, just that I was crying, that I thought my baby was going to die, and that they thought he had something called Transposition of the Great Arteries. They also told me that if he did have this condition, we would have to deliver in Seattle or Spokane so he could immediately have open heart surgery to correct the issue. He wanted to see us in 4 weeks for another ultrasound before referring us to a cardiologist, just to get a better look at his heart. I relied mostly on my mom to repeat everything to me later, after I had calmed down a bit. I'm so glad she was there.

After our appointment, I had to call Jeremy and try to explain to him what was going on, though I didn't quite understand it myself. He wouldn't be home for another three weeks. I think the hardest part was knowing I had to wait to see him, hug him, and cry with him.

I'm not gonna lie, the past month has not been pretty. We have spent most of our time researching, crying, and praying our butts off. We prayed (and continue to pray) that God will heal our baby's heart so that he doesn't have to have his little body cut open (although now that we've had another ultrasound since then, it looks like this will have to happen), and that Jeremy and I will have the strength to deal with whatever gets thrown in our paths.

At first we were really scared, but the more we researched, the more we learned that his condition is very treatable, the operation has a 95-98% success rate, and as long as he gets through the surgery will be able to lead an active, "normal" life (what is normal anyway?). Don't get me wrong, it is going to be hard, but knowing that there are other kids and adults who have gone through this and live happy, healthy lives is very reassuring. Besides, if he is anything like us, he won't go down without a fight :)

So world, this is what we've been up to lately. If you are a friend or family member and are reading this, please don't be offended that we haven't told you or been hanging around much lately. We are just trying to figure out what is in store for us, and will be ready to venture out into the world again shortly :)

xoxo

Jen + Jeremy

(print below by LittleBeanPrints)

The Baby Mobile has arrived!

Thanks to Jeremy, the Baby Mobile has arrived!!!!

As soon as the doctor told us we were having twins, one of the first things we said to each other (besides "holy c$@*!") was "we need a bigger car." There was NO WAY the wonder twins and their entourage of equipment (car seats, double stroller, etc) would fit in our 2001 VW beetle. We have been searching the ends of the earth (ok maybe just the pacific northwest) for a decent car that would fit all of us comfortably ever since. A few days ago we found that vehicle...

Meet our new ride, a 2004 Saturn Vue with 50k miles. I see a lot of spit up and poopy diapers in this car's future...

A special thanks to my uncle Paul, who scoped this car out for us, as it was located in Idaho Falls. An even bigger thank you to my husband, who endured a 20 HOUR GREYHOUND RIDE (complete with vagabonds, a 5 hour layover in Butte Montana, and a 500 pound gentleman that decided to sleep in the aisle and FART on Jeremy the entire trip) to pick up our baby mobile. You truly are my hero <3

Now, what should we name this bad boy?

Greetings Earthlings....

Well hello friends and family, welcome to our new blog! Jeremy and I have been wanting to start a blog about the comings and goings of our life for a while now, and are finally getting around to it.

For those of you that don't know, here is what's been going on in our neck of the woods in the last 8 or 9 months:

In April, the landlords of the building we were renting for the salon/studio informed us they were moving back from Portland and wanted to use their space for their art studio again. In a matter of days, Jeremy also got a call from a friend offering him a contract job in welding that we couldn't refuse, so instead of relocating the business, we decided to close the salon so Jeremy could pursue welding.

The contract job Jeremy was doing ended in late July, and about a month later was offered a job in Walla Walla welding sculptures. It sounded right up his alley, so we packed our things and headed further into wine country.

The day after the move, I decided to take a pregnancy test. Those two lines appeared almost immediately! We were/are ecstatic and immediately began planning where the nursery would be in our new Walla Walla home.

The excitement of what was to come soon gave way to vomit. Lots of vomit. And exhaustion. I remember texting my friend Sara at that point "remind me never to get pregnant again." Little did we know there was a reason I was sooooo sick.

Fast forward to mid-November. Jeremy got laid off and soon we were headed back to the tri-cities (a blessing in disguise). Thank God for understanding landlords. Because we were waiting for health insurance to kick in from this job, we still had not been to the doctor. Fortunately I was able to get a job almost immediately in town and we would soon have health insurance as of Dec 1. We were so excited to see our baby via ultrasound! That month seemed to go on forever.

FINALLY, December 7th rolled around, the day of our ultrasound and first doctor visit. Boy were we in for a shock. Turns out, there was not one but TWO babies!!!! Later that day the doctor told me that was probably the reason I was so sick early on. Apparently making two babies at the same time is hard work on your body :)

So that sums up our crazy lives over the past few months. We plan to post our adventures as often as we can so stay tuned!

xoxo

Jen+Jeremy