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.
Friday, July 6, 2012
Tuesday, July 3, 2012
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.
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.
Thursday, June 28, 2012
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.'
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.
anyone like you...
ever in the world.
Heaven blew every trumpet
and played every horn,
on the wonderful, magical,
night you were born.
Saturday, June 23, 2012
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...
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...
Monday, April 23, 2012
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.
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.
Tuesday, April 3, 2012
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.
Tuesday, March 27, 2012
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.
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