Tuesday, April 29, 2014

Smiling and Swallowing

Why is Calvin so happy?


Because he (finally) passed his swallow test and now we can get that awful tube out of his nose!


And go home soon!!!


"WHAT?! This isn't my home???"

I can see why you would be confused, dear Calvin.
You have lived here in the PICU longer than you've lived in your home.
You have also spent more time in the NICU than you have in your home.
In your 9 weeks of life, nearly 7 have been in a hospital crib instead of your own crib.

BUT, that should be over soon!
We hope to be discharged tomorrow or the next day.
As soon as it is clear Calvin is gaining weight, and the neurologist signs off, we are good to go!

We wont miss the hospital, but we will desperately miss this:

(proof in numbers that Calvin is breathing, alive and well.)
(We stare at it all day and all night.)

Supposedly you're supposed to stay away from commercial products that claim to 
"reduce the risk of SIDS."
Like the Angel Monitor, Snuza, etc.
(All the baby apps say so.)

So we just decided to go with what they use in the ICU.
 We found one just like this on eBay.
It should be arriving soon.

Just so Calvin can feel at home, you know?
(It would be way too dark and quiet without the soft glow and constant beeping and alarms.)

Monday, April 28, 2014

Waiting

 Waiting for Calvin to eat and grow is tiring.


At least we can snuggle with him on our couch/bed!
That's the best.


We have fun too, while we wait.
And dress him in clothes again! YAY!


His swallowing seems to be getting better each day!
We are so glad, because some kids never learn how to swallow again, and end up with a feeding tube straight into their stomach.

He does seems to have some post-traumatic stress disorder.
He gets all panicked and looks terrified when we finish feeding him.
He cries HARD.
I try to explain that we aren't going to starve him or drug him anymore, but it might be a little while before he believes it.

Hopefully just a few more days here until we can go home!

Saturday, April 26, 2014

Answered Prayers

This week has been one full of answered prayers.



Calvin seems to be pretty much done withdrawing from the sedatives -finally!
It was heart breaking seeing him go through it again, but this time was so much better.
He didn't have his breathing tube in, so we could hold him whenever we wanted!
When he cried, we could hear it, and comfort him.
And with each cry, his lungs got clearer and stronger.
So we just rocked him and felt so, so blessed as he cried and cried.


We probably looked freakish to anyone walking by our room -
rocking our screaming baby for hours, while grinning from ear to ear!


Each day we slowly weaned him from the high flow oxygen and yesterday we turned it off completely! 
It was pretty nerve-wracking to hold him without any breathing stimulation at all, and just wait and watch.
But he did so great, and now it's been almost 24 hours without any assistance at all.
He's had a few desats but recovered quickly with no intervention.


We are still feeding him through his feeding tube because he has failed a few swallow screens.
The part of the brain that tells you to breathe is also the part that tells you how to swallow, so he's been struggling with that.
He is SO hungry all the time and wants to eat so bad!
He has actually lost weight since we got here almost 3 weeks ago.
He was almost 7 lbs and is now a little over 6.5 lbs.
We are working with him constantly on remembering how to swallow.
It is just taking time,
We are doing pretty much exactly what we did in the NICU 2 months ago - working on feeding and growing.
It sort of feels like we are starting all over again.


It is taking a lot of patience, but we can do that! 
If there is one thing we have learned, it's how to be patient with our little man.
And it's so much easier now that we can play with him and hold him and walk around with him.
It's the best!
We are so happy Calvin decided to stick around and feel so blessed and grateful for every second we have with him!

Thursday, April 24, 2014

Battle Wounds

Our little warrior's battle wounds:


Here you can see the scar on his back from the fetal surgery, his neck from the decompression, and the shunt which is behind his right ear.


He is SOOO tough.
Someday the girls are going to think his scars are hot.

Wednesday, April 23, 2014

Our Rock

Our rock - in the rocking chair.


The other day some well wishers came by to visit.
It was about half an hour after Calvin had had his major desat and totally stopped breathing on his own.
I was a basket of nerves, holding onto Calvin and staring at the monitor.
The last thing I wanted to do was make small talk with visitors.

But Nate smiled and laughed and chatted with our friends.
While I shot fire darts at them with my eyes and didn't say a word.

He has been calm, cool, and collected every step of the way.
When the Dr.s come to talk and explain, and I'm overwhelmed by the situation and tune out, he listens.
When I can't handle Calvin getting poked and prodded one more time and run out, he stays and watches, and holds Calvin's hand.
When I'm exhausted from helping Calvin withdraw from the medications, he stays up and gently rocks him all night long, so I can sleep.
When I don't have the energy to answer my phone, he talks to all our friends and family and provides updates.
He makes hard decisions, consults with the Dr.s, and yells at nurses who are being too rough with our little guy.
He makes sure I eat and sleep, and constantly puts my needs before his.
He runs - literally, runs - to and from the parking lot when he goes home to shower and change so he doesn't leave us alone a second longer than he has to.
He finds ways to make me laugh and holds me when I cry.

I could not have done this without him.
I really think I would have crawled into a hole and hid until it was over.
He makes up for every thing that I lack - which is a LOT.
I'm so glad Calvin has him for a dad.
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