Thursday, April 17, 2014

Withdrawal

Yesterday at 8 am we turned off Calvin's sedation.
The next 36 hours were torture.
After 7 days of being on heavy narcotics his little body had built up quite a tolerance.
Nate and I took shifts as Calvin went through the withdrawal symptoms.
He slowly woke up. It was fun seeing his eyes again.
Then his body started to shake and twitch.
He gagged and vomited.
He cried his silent cry.
All day. All night. And all day.

We held his tube as he thrashed his head back and forth.
We held his feedings - starving him once again - and pulled air out of his stomach (from him gagging and swallowing air) over and over again.
We held his legs down when he fell asleep so the twitching wouldn't wake him up.
We held his arms down after he managed to pull out 2 IVs, and needed more placed.
We held him, talked to him, sang to him - tried our best to make him comfortable.

We came off fast and hard because the drugs cause respiratory depression and our goal was to get him breathing on his own.
After withdrawing all day Wednesday, Thursday was Calvin's day to show us what he could do.
Thursday morning dawned, and he was doing really well.
We sat and watched his breaths on the vent.
Yellow = his own breath, red = the vent giving him a breath.
When it was mostly yellow we started to wean him off the vent.
We started to get very hopeful that he would be able to be extubated and even possibly not need the surgery.
By 10:00 am the pauses between his breaths got longer...and longer....
The machine started to alarm.
We kept trialing him with settings that mimicked breathing on his own.
He did really well... most of the time.
My dad always says,
"Close only counts in horseshoes and hand grenades."
Breathing really great most of the time does not count.
And so this afternoon, after 36 of the worst hours ever, we decided to proceed with the decompression surgery.
The OR is scheduled for tomorrow at noon.
Hopefully relieving that pressure will give him the drive he needs to be able to breathe really well ALL of the time.
Calvin is now once again sedated, and appears comfortable.
I miss seeing his eyes, I miss seeing him awake, and I hate seeing him drugged like this - 
but I am glad he's not thrashing and crying. 
There have been hundreds of friends, family, and even strangers that have told us they are praying and fasting for Calvin.
That has meant so, so much.
I wish this could be one of those stories where the baby was miraculously and quickly healed from all the prayers.
And he went home the next day with his mom and dad, breathing totally on his own, no surgery needed.
I wish I could be inspirational in some way.
Maybe someday.
But right now, it seems like we are barely getting through each hour.
The hours add up, and we manage to get through the day.
And then once we do that, we have to worry about getting through the night.
And then... repeat.
It has been a very dark and difficult time for us.
We have lost hope and been in deep despair more times than I want to admit.
There have been too many times when I have become numb - too numb to think, too numb to feel...
Too numb to pray. 
In those times, when I just can't bring myself to even say a little prayer for my baby, I am still able to feel comfort in knowing that there are so many others out there, making up for what strength I lack, and praying for our little boy.
And right now, I think that's the miracle I need.

Monday, April 14, 2014

Calvin Anatomy 101

Calvin's body didn't develop the same as everyone else's.
Around the 4th day after conception, when his spine and brain were developing, they didn't close up quite like they should have.
He had a hole in his back (myelomeningocele or MMC) down around his 2nd lumbar spine.
Because of the hole, cerebral spinal fluid poured out when it should have been circulated down and back up to his brain.
This caused the back of his brain to herniate down into his spinal column.
That malformation is called an Arnold Chiari type 2.



The back of the brain acts like a plug and doesn't allow for the spinal fluid to flow like it's supposed to. 
So fluid gets stuck in the top of the brain, and causes enlarged ventricles or hydrocephalus.


With the hydrocephalus, pressure in the brain is increased.
Sometimes there are symptoms associated with it, sometimes there aren't.
When a kiddo becomes symptomatic, a shunt is placed to drain the excess fluid.


There are 2 options for repairing the MMC (hole in the spine)- prenatal or postnatal.
We qualified for the prenatal repair and had open fetal surgery to patch up the hole.
Having the MMC repaired prenatally means much better outcomes for these kiddos.
When the hole is repaired before birth the brain has time to heal and re-route the fluid while the baby is still in the womb. Most often the Arnold Chiari herniation completely reverses and disappears, the plug is removed, fluid is able to circulate like it's supposed to, and there is no hydrocephalus. 

The prenatal repair also allows for protection of the spine against the amniotic fluid, which causes further nerve damage.



With the postnatal surgery 85% of kiddos end up needing a shunt.
With prenatal surgery that number drops to 40%.

The only truly dangerous thing with this diagnosis is if the Arnold Chiari Malformation becomes symptomatic.
With the fetal surgery this is very, very rare, as the Chiari typically reverses and goes away.
It is even very rare with the postnatal surgery.
Symptoms include headaches, dizziness, nausea, difficulty swallowing, impaired gag reflex, etc.
Sometimes, but not very often, the Arnold Chiari Malformation can cause breathing problems and death.

When considering the fetal surgery we looked at risk of death. 
In the MOMs trial, the study we used to make our decision, 2 babies died in each category. 
In the prenatal group the deaths were from prematurity and in the postnatal group they were from complications with the Arnold Chiari.

Now for Calvin -
His Chiari did not reverse like it should have.
We were disappointed because that meant an increased possibility for a shunt, but we never, ever considered anything more serious because his Chiari wasn't that bad to begin with.
His ventricles also didn't shrink like they sometimes do, but they also didn't get bigger, which was good.

The first week after he was born, his ventricles and head circumference remained stable.
We were excited and hopeful that he wouldn't need a shunt.
After that first week his head started to grow.
At first we hoped he was just going through a growth spurt, but as we watched it get bigger and bigger we began to figure a shunt was probably inevitable.

Before we left Denver our neurosurgeon told us there was no reason to shunt - no matter how big his head got - until he was symptomatic, and the only symptom to REALLY worry about was stridor, which is a high pitched breathing sound that indicates his throat closing.

So we went home hopeful but cautious.

When we had been home for about a week and a half Calvin started spitting up - a lot.
I asked around and most people said it was normal for a baby to spit up a lot.
Calvin hadn't spit up once in his whole first month of life, so I was a little skeptical, but decided to wait until his next Dr.s appointment to ask about it.
He also was looking downward a lot, which we attributed to premature eye muscles.

2 weeks after we got home was Calvin's first follow up with a neurosurgeon in Las Vegas.
She looked at Calvin for about 30 seconds and sent us to the hospital across the street for an emergency shunt the next morning.
Turns out his spitting up was actually throwing up from increased pressure in his brain, and his looking down was also from the pressure.

We went home a little disappointed, but also relieved.
Now we wouldn't have to worry about watching for symptoms, about his head growing, or about the pressure in his brain.

We never expected his Chiari to be a problem.

When Cal stopped breathing on Wednesday the first test they did was an MRI to check his shunt.
His shunt appeared to be working, and symptoms pointed to a symptomatic Chiari, but the MRI wasn't showing that there was increased pressure.

We decided to wait a week to see if things in his brain evened out and he started breathing again.

At this point we are fairly certain the problem is the Arnold Chiari.
We are going to take him off sedation on Wednesday to see how he does, but most likely we will be going back to the OR on Friday for a decompression surgery.


During this surgery they remove part of his skull and parts of the top 2 vertebrae.
It sounds more dramatic than it is.
He will grow the bones back, apparently. 
Like Harry Potter.

I've talked to 2 other women whose babies have had this next surgery.
One of them said after the surgery, her baby got better so fast she hardly had time to think!

We were initially hoping that he would get better and not need this surgery, but at this point I want to get it over with and get my baby back!!!
Watching him lay there with the breathing tube, watching (but not hearing) him cry, worrying every second about his breathing, bradys (low heart rate), and de-sats (low oxygen in blood), not to mention being-in-the-hospital problems like pressure sores, IV infiltration, infections, mean nurses, etc...
And then the guilt - oh the guilt! 
Not being able to feed him when he seems hungry, not being able to hold him and snuggle him when he's sad, sitting by his side at all times in case he wakes up and is scared, being terrified to leave him...
...that all this is somehow my fault. 
At this point I won't say there isn't anything worse -
I've learned my lesson, there is always something worse- 
but it's pretty freaking hard.

Friday, April 11, 2014

Waiting for Perspective

Calvin rocked the NICU. 
He started out strong and improved from there.
We were there for 3 weeks but really only had bad news a few times.
We had lots of friends in the NICU who got bad news a lot.
We talked about how awful that was for them, and I told Nate I didn't know how we would handle bad news because really we only got good news.
We felt so blessed because we had the best baby in the whole NICU, and in the whole world.

The NICU was hard.
People would tell me how strong I was - but I didn't feel strong. 
I cried a lot. 
I even thought, "Why Calvin? Why me?"
There were days and nights that I thought things like,
"This is the hardest thing I've ever had to do."
and 
"This is the worst day of my life."

Perspective - and time - changes everything.

While in the NICU we were able to hold our baby nearly whenever we wanted.
We were able to feed our baby when he was hungry except once, right before his surgery.
We were able to hear our baby when he cried, and watch him as he breathed.
We were able to touch our baby.

But the biggest thing - 
and the thing I didn't appreciate at the time -
was that we always knew we would bring him home.
It wasn't a matter of if, only a matter of when.

It was easy to imagine our lives with Calvin.
Easy to look forward to the future.
I would imagine laying on my soft carpet at home, with the windows open, basking in the sun with him.
We imagined going on walks, reading him books, watching him grow...
We even looked forward to the normal new parent things -
midnight feedings, diaper changes, taking him on car rides when we couldn't get him to stop crying...

I thought that that experience was the hardest thing I would ever have to do.

I was very wrong.

Now we can't hold our baby.
We have to watch him cry, but we can't hear it because there is a tube down his throat blocking the sound.
But he needs the tube, because he can't breathe by himself.
And we can't comfort him, because if he moves, he stops breathing, even with the tube.
And we can't fix him, because we don't know what's wrong.

His MRI wasn't 100% conclusive.
It's possible that pressure in the bottom of his brain is causing these symptoms, and the shunt is only relieving pressure on the top of his brain.
Our neurosurgeon sent his images to other experts across the country, including our Dr. in Denver.
They decided to wait until next Thursday and see if his brain evens out and decides it wants to breathe again.

Yesterday was rough. 
Calvin went for his MRI around 10:30 am.
When he got back we stopped his sedation and waited for him to wake up.
He started to stir around 5 pm, and I was able to hold him for about 10 minutes. 

The last time I'd held him was over 24 hours before, and he had stopped breathing.
I was terrified, but grateful to hold my little man again.


Then the Dr. decided to take out his tube and see how he did.
He didn't do well.
We watched him struggle for an hour.
A very long hour.
He stopped breathing 5 times in the hour.
The Dr. told us, "He doesn't have the drive to breathe."

I left the room sobbing.
I couldn't watch my baby struggle anymore.
The Dr. tried to put his tube back in, but his throat was too swollen and she couldn't.
Nate watched them bag our baby while the emergency room Dr. -
the one that sent us home on Sunday - 
raced upstairs.
He was able to place the tube and Calvin turned pink again.
The shade I've termed "baby pink".
The color babies should always be.

Calvin didn't do well overnight.
He started producing thick green mucous in his lungs as a result from all the intubations.
His kidneys stopped producing urine.
He had a period where he stopped breathing - even with the tube in him.

The Dr. had considered attempting to remove the tube again today to see how he did after a good nights' rest. With all that is happening, Calvin is going to remain with the breathing tube for the time being.

Last night my BFF Marilyn (who is a NICU nurse) came and took care of Calvin for us while Nate and I went home to eat and shower.
While there, I asked Nate if he wanted to play the best-case worst-case game with me.
He asked if I thought I really wanted to do that.
I told him we are both thinking it, we might as well talk about it.

Best Case: 
Calvin wakes up, pulls his tube out (because he's breathing on his own and knows he doesn't need it), and is in his crib waiting for us when we get upstairs. 
He stands up and tells us he loves us and wants to sleep in our bed with us, please?

We had a good time coming up with our best case scenario.

When we finished, we were quiet.
Neither one of us wanted to finish the game.

Perspective - and time - changes everything.

Looking back, the NICU seems easy.
We met our baby, learned how to take care of him, and fell in love.
And we knew we would bring him home.

I hope that in time we can look back on these days with perspective and say the same thing about them.


In the meantime we are trying 
(but mostly failing)
to appreciate the rain that brings the rainbows.

And hoping for a rainbow soon.

Thursday, April 10, 2014

Please Pray

One week ago tonight I was driving home to shower and grab a change of clothes after being admitted to the hospital following Calvin's first neurosurgery appointment.

I was bawling my eyes out, praying loudly, asking God how much he expected me to take, and telling him that I couldn't handle much more.

The next morning Calvin went to the OR for an emergency shunt placement.

He was discharged 2 days later. 
When we took him home he cried and cried - when we moved him, touched him, tried to feed him. 
It was awful. 
He was in pain and there was nothing we could do about it.

Saturday night he started breathing funny. We watched him for a while and then decided to take him to the ER. When we got there he had fallen asleep, so we decided to not check in and just go home.

We watched him all night and at 8 am we got too nervous and took him back.

After 6 hours in the ER, it was deemed that his breathing was totally normal and we took him home.

Monday and Tuesday I watched him and watched him.
He kept breathing different, eating different, crying different, acting different.
We tried to convince ourselves that, like the ER Dr. said, that was all normal.

We attributed it to post-operative pain, to him being more alert now that the pressure on his brain was gone, to normal baby fussiness....

I got more and more worried until I was no longer functioning like a normal person.

I couldn't think, couldn't focus, couldn't talk, couldn't eat or sleep, couldn't even look at Nate.

All I could do was watch Calvin's breaths.
Every motion I went through was to make sure he was still alive.

He had an appointment with his pediatrician this morning, and I could hardly wait to hear another confirmation that, yes, this was all normal.

Then this morning, as I was holding him, Calvin went limp, turned blue, and stopped breathing.



When I was 17 years old I was driving home from a friend's house when it started snowing - and snowing hard. I had just began the descent down a large hill when my car started to fishtail.
In my head, I repeated what I knew I had to do.
"Whatever you do, don't slam on the breaks, steer toward the skid, don't jerk the wheel."
I'd been told many times, taken driver's ed, passed my driver's test.
I knew what I was supposed to do.
But my body couldn't do it.
I slammed on my breaks, spun the wheel opposite what I should have, started spinning out of control, and slammed into a tree.



When I looked down and saw that my sweet little baby was blue my heart stopped.
Immediately I thought back to the last blue baby I coded at work.
I remembered that baby's face, his eyes wide open staring blankly into space.
I imagined my hands holding that little boy, doing chest compressions.
I remembered the team doing CPR. 
I knew what I was supposed to do.
But my body couldn't do it.

I let out what, if anyone had heard, I think they would have described as a blood-curdling scream.
But no one heard, because I was home alone with him.
I screamed out his name, told him to wake up.
I kept screaming.
He kept not moving.
I ran down the hall, and somewhere along the way remembered that I should do rescue breaths and call 911.
I was shaking too badly to do either.
I put my mouth on his face and attempted to breath for him, but I knew I didn't do it right at all.
I ran down the stairs and out the front door.
As I ran across the street to my neighbor's house, I tried to call 911. 
But I couldn't get past the home screen on my phone - I couldn't remember how to place a call. 
I kept looking at the calculator square and trying to remember how to press the right numbers.

When I reached my neighbors door, I pounded and screamed.
Nothing happened.
They weren't home.

At this point, something inside me clicked.
I was all alone, and I needed to be in control.
I was finally able to call 911.
I was not, however, able to talked in a normal voice.

After waiting on hold (REALLY!?) for what was probably seconds, but seemed like an eternity a lady answered.
"911, is your emergency medical, (something, something)?"
I told her medical, my baby is blue, please send someone NOW.
"Calm down ma'am! I can't understand a word you are saying. What's your location?"

That made me mad enough to remember to give another rescue breath.
This time Calvin gasped a little and startled.
He looked at me, his eyes were so wide.
He started to go from blue to grey and was trying with everything he had to breathe.

I ran back to my house and tried to answer their questions in between my screams to Calvin.

"Does he have any medical history"
"Is he responding appropriately?"

What???!!!

Again, this jolted me back to reality and I was able to give another breath.
Which is good, because not once did the lady actually tell me to breathe for my baby.

He began breathing irregularly, and went from grey to white.

At this point my neighbor drove by on her way home.
She ran up to us, and I threw her the phone - I couldn't handle the 911 lady any more.
I gave him a few more rescue breaths and he started to come to.

Finally, a fire truck came around the corner.
They immediately put Calvin on oxygen and he started to improve.
He was still pretty limp in my arms, but he was breathing.

My neighbor called Nate and minutes later we were both in the emergency room -my emergency room- once again.

They began to run some tests, and took the oxygen off to get a swab of his nose.

This time Nate was holding him when he stopped breathing, and once again, started to turn blue.

The Dr. watched him.
And watched.
And watched.

Finally I asked him if he would maybe like for me to give my baby some rescue breaths.

"I want to see what he does," was his reply.

He turned blue, and went limp.

They called a code on my baby.

People came running.
Nurses, respiratory therapists, pharmacists....
My co-workers.
My friends.

They worked on my baby until he was intubated and stable.
They hugged me and gave me tissues.
They stood next to me while everything was happening.
Comforting me, saying just the right things.
(Not like the 911 lady.)

After a few hours, and things had settled down a little, and we were in the pediatric ICU, we tried to get a grasp on what was happening.

The intensivest told us there are 3 main things that cause a baby to stop breathing.
1. Brain
2. Heart
3. Infection

Obviously we are worried most about brain, because he had a shunt placed last week.
His heart has been strong throughout everything, and every lab that has come back so far testing for infection has been negative.

Calvin had a CT and an MRI checking his brain and his shunt.
His neurosurgeon has been out of town for a few days and was flying back today.
She came straight to our hospital room when she landed.

She told us the CT looked good, the shunt is working well.
The MRI is another story.
She had difficulty getting a good view of the back of his brain, where his herniation is.
She said that was either a good thing, or a very, very bad thing.

By the time she got here it was too late to do another MRI, so he is having another one in the morning so she can get a better look.

Right now he is sedated with a breathing tube.
We will know more tomorrow.
Please pray for our sweet little boy.
I just want to take him home and hold him close.
Love, Nate and Cami



Friday, March 28, 2014

Our New Normal

I feel like I'm finally coming out of a daze.
Since December 3, when we found out about Calvin's diagnosis, everything has kind of been a blur for me.

Calvin does this thing where he will put his hand right in front of his face and then look at it with total shock, like,
"HOW DID THIS GET HERE!?"

That's kind of how I was for almost 4 months.
I would look around me and think,
"what the heck IS this, what am I doing here, HOW DID THIS HAPPEN!?"
It didn't seem real.
It still doesn't.
I know I was there...there is photo evidence.
And I have a really cute scar and no feeling between my belly button and my hips.

But besides that, it seems like the last 4 months didn't happen.
Oh, besides now I have a baby and all.

We came home last week to our Christmas decorations - the ones we put up right before we had our ultrasound. 
The ice cream we bought right before leaving was still in our freezer.
(sadly, it was no longer edible.)
My shampoo was in my shower, and my bed was made.
It was almost as if nothing had ever happened.
It was almost as if we had just stayed pregnant until Calvin came, then we brought home a perfect little boy.

Because that's what he is - a perfect, sweet, awesome, adorable little boy.

I often look at him in awe, and I have to remind myself of his surgery, and diagnosis. 
I check his scar, because it doesn't seem real - he is too perfect. 
His scar is the only evidence that anything was ever not perfect.

He does everything all the other babies do.

He eats until he passes out...


He is weirded out by his sling...


He wears us out...



He loves bath time...


Sometimes he's perfectly content...


And seconds later he's soooo hungry he could eat his own hand!...


He likes going for car rides and walks...


...and riding on a fake kangaroo in his real Mama Roo....


He looks adorable in all his baby clothes...
(and he's ALMOST graduated out of preemie clothes and into newborn clothes!)


...just like all the other babies.

So I was pretty surprised when a woman I know congratulated me on our new bundle of joy, and then asked me, 

"so did he come out normal?"

I know she meant well.
I know we have asked for and been the recipients of many prayers for Calvin.
I know it shouldn't have hurt.

But it did. 

I was so surprised, stung, and taken aback, and I didn't know what to say.

I mumbled something like,
"well, we won't know the extent of his motor function until he's older,"
or something like that.

Because to me, our baby is the most wonderful human being ever.
He's not normal - he's very, very special - he's been through a LOT, and he's AMAZING. 
But that wasn't what she meant.

I guess we do some things that aren't completely "normal" to other people.

We take him to more Dr.s appointments than some babies.
We rejoice when he kicks his little legs, and wiggles his little toes.
We straight cath him every 8 hours, as a precaution until he gets his kidney and bladder tests.
And we are so happy when he pees on his own, even if it's all over himself or us. 
We do physical therapy on his foot and hips, and hope he doesn't mind too much.
We measure his head every night, and memorize every detail about him so we will know if anything ever changes.
We stare at him for hours, amazed and sad that 80% of the babies with his same diagnosis are never born.
We care for his scar, and show it off to all who are curious, proud of all our little man has accomplished so far in his life (and his pre-life).

We don't know anything else.
And neither does Calvin.
So it's normal for us.

And perfect.


We love our new life together.
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