Amanda Kern

This morning as Chance and I were taking photos, I prayed he would be home all day. Instead, he had other plans. His shunt began to leak again and we found ourselves rushing around and heading back to the hospital for him to undergo another surgery. His shunt required a revision to shorten the catheter tube and to insert a smaller shunt that is not programmable.

Just a few photos from today:

We’re now at Arnold Palmer Hospital. Chance made it through surgery well! He definitely seems to prefer his new shunt better. He returned from surgery starving and has since begun nursing again. He’s resting well amongst the non-stop medical beeping and monitor alerts. Hopefully we’ll be home tomorrow.

Let no feeling of discouragement prey upon you, and in the end you are sure to succeed. ~ Abraham Lincoln

Yesterday was Chance’s first full day home. I suppose we can add an asterisk to that sentence and include that we took a 4+ hour trip to the ER in the middle of the day. Around mid morning we noticed Chance’s head where the shunt was inserted was a bit more swollen and began leaking fluid. Instantly we became the nervous paranoid parents calling Chance’s doctor. She was on call for the weekend so we met with her at Arnold Palmer Hospital where Chance underwent a few x-ray’s and MRI’s to ensure his shunt was still properly in place. He seems to hate x-rays but was as cozy as could be in the MRI. Everything went well and his doctor came in shortly after to drain fluid from the area surrounding his shunt. After wards his shunt was recalibrated to ensure it was draining the proper amount of fluid, apparently MRI’s set off the calibration. Thankfully we got to go right back home, with a nice hefty ER co-pay…and a much happier Chance.

Yesterday was the first day I spent taking newborn photos of Chance. In the morning we took a few and when we returned home from the hospital I took more. I have to admit I’m still so drained all around and have very little energy. My physical recovery from the C-section has not been easy at all. So I’m taking it in small strides and spent more time working with Chance and getting him comfortable than trying to take a gazillion photos. I think it paid off when you see the photos. I’ve had a lot of people call me the “baby whisperer” since beginning to do newborn photos, but I have to admit it’s so much more challenging to conquer the challenge with your own little one…even more so when you know they’ve been through so much. So every little squirm and cry made me nervous and more attentive to his needs.

We agreed in the morning as I took his photos that he had a lot to smile about…and then he smiled for me.

Though this photo won’t be added to my portfolio, it is worthy of sharing…it breaks my heart to see but it is the image that will never escape my mind. Chance’s scar will soon heal. It will transform. It will grow with him. It will never ever go away. It is now a part of who he is. As much as I love to photoshop photos and make little babies look so much more perfect, his scar will never be erased from photos taken from him. It will be a constant reminder of how much he’s had to endure in the first few weeks of his life. His shunt can be seen in the back side of his head. It’s rather large in comparison to his tiny little head, but we’ve been assured that he’ll grow into his shunt eventually. Yes, he’s perfectly imperfect.

Yes, you need not feel sorry for my little man…he’s smiling because he’s happy to be home where he belongs.

The first day and a half has been challenging. We’ve found ourselves coping with the divide of Jason and I between three children. Thankfully Hope has been a huge helper. She’s been a great big sister to both her brothers. She loves to hold and feed Chance any opportunity she gets. Jaylen has been a little more whiney at times, but I don’t blame him…he’s use to being the baby boy. He’s a proud big brother who likes to point out when Chance has his eyes open or is crying. Last night Jaylen came to cuddle beside me as Jason cared for Chance and I admit I was the one missing him being the baby boy. It didn’t take long and he got up and ran off to play. Chance has come to protest nursing. It’s been incredibly hard for me because it does make feeding time more challenging. So for now the milk factory keeps pumping and hopefully if we don’t give up he’ll transition away from the laziness the NICU brought him in his bottle feeding.

“Above the storm, the smallest prayer will still be heard.” -Dolly

We’ve waited what has seemed like an eternity to finally bring him home. This afternoon Chance escaped the NICU and is now home. He enjoyed a bit of the Florida sunshine on the way home.

Jason and I spent time trying to see who was fastest at sharing some of the first moments home with our little man.

I’m a little anxious to do some newborn photos soon. Today we took just a few photos until we get into a routine. Chance definitely wasn’t too thrilled with the idea of taking photos this afternoon.

In a few short hours at home we’ve discovered our little man is squirmy, loves to cuddle, and is fiesty when he’s hungry or has a dirty diaper. In about two weeks he has a ton of medical appointments, but until then we hope to be spared too many trips back to the doctor or hospital.