Photos of Chance + an update

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.

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March 13, 2011 - 9:31 am

Shanna - Amanda,
The pictures are beautiful, and the one with the scar is my favorite! He is still perfect in my eyes as he has inherited your strong fortitude. I also love the smiling ones he is smiling cause you are his momma! I love you!

Miss Shanna

March 13, 2011 - 11:45 am

Kim - The pictures are wonderful, Amanda, and his scar really looks good compared to some I’ve seen. It will get so much better as he grows. You have a beautiful family, I hope you can just enjoy them all for a while. It’s hard with the stresses of the unknowns and worrying about shunts, etc. But as you have a few normal days under your belt, you’ll relax and not worry so much. Hang in there!

March 13, 2011 - 2:12 pm

Terri Sierra - I love seeing that smile! The picutres are great and I agree, Chance is perfect just the way he is. I just know that you, Jason and the kids are all blessed to have one another. I hope you all have time to relax and enjoy being home. Love you all.

March 14, 2011 - 2:21 pm

Regina Files - I know what you are going through and how tough it is. My son, Patrick, was born with spina bifida 17 years ago. I am not going to tell you it is easy because that would be a lie. His level is much higher than your son’s. His defect is in the thorasic area. He was given three hours to live at birth. He had club feet and hydrocephlus also. After four shut revisions, three sets of rods that was rejected by his body, multiple bladder surgeries,he is looking forward to graduating in May 2012 from high school, only one year behind his age group. He intends on being a 911 dispatcher or a missionary.

March 18, 2011 - 2:10 am

Pam A - Amanda, you’re pictures bring tears. Baby whisperer, indeed. I have to admit, the very first thought I had when I saw the picture showing the incision was, “Beautiful scar.” Our little one has a few beautiful scars and it’s just part of who she is. Just last week she gained a new one through a long-awaited kyphectomy (rods to correct a serious curve right where her original myelomenigocele repair was, T10). It’s amazing how quickly the scars go away, and sometimes I’ll go months without really looking at them. When I do, I’m amazed at the body’s God-given ability to heal.

Glad you’re both home. Praying for smooth days with lots of cuddling!

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