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.