Updates & Setbacks

“When you come to the end of your rope, tie a knot and hang on.” – Franklin D. Roosevelt

If you’ve been following me in facebook, twitter, or flickr you’ve probably seen updates since my last blog post. I realize it’s been several days since my last update and now that I’m home I figured it was time to share another update. The last week has certainly been a whirlwind of emotions and challenges that have yet to slow down.

As I mentioned to prior to Chance’s birth, two of my favorite and most talented photographers in Orlando agreed to join our family at the hospital surrounding the moments of Chance’s birth. I obviously wasn’t able to take photos that day. Jason did take some that I shared previously. Obviously even with him taking photos, it just isn’t the same as having someone else around to help share observations from the day that was full of emotions. Our family is incredibly thankful for their presence on Chance’s special day and thanks to them we have amazing moments to look back on which will remain a constant reminder of just how blessed we feel to have our little man here. I think everyone who see’s their photos will recognize how much of a miracle we realize this little guy is now that he’s here. Here are links to the other photos shared:

2 DAYS OLD: Feb 24, 2011
Every day was filled with news on how our little man was doing. Chance’s neurosurgeon would assess him daily and give us an update. Every day we were able to visit him in the NICU as often as we liked. On day two they removed the bandage that was covering the part of has back that was once open and now has been closed by sutures. Yes, my little one underwent surgery just a few hours old and he’ll have a scar for his entire life. Here’s a close up when he was just two days old. Considering the surgery Jason and I thought it did look to be improving. We’ve been told many times that both Chance and I must have awesome doctors when they’ve seen our sutures. Here it is uncovered so that it could air dry and heal.

Chance's incision

My little guy was expected to lay in the prone position for the first few days of his life so that his back could heal. The biggest concern was injuring the opening in his back and obviously it had to keep perfectly clean. If it got dirty, even by his own poop, it risked getting infected. Obviously until it’s fully healed the biggest infection that is feared is meningitis. It was tough to accept that all we could do was sit and admire him. As a mother, I have to say that going the first several days without holding or nursing him was heartbreaking. Here’s a photo of Chance on day 2 laying in the prone position. The translucent flap near his diaper was used to help prevent poop from going towards his stitches. Anytime it did, it was cleaned and the area was sterilized – a pretty involved process to keep his back protected.

Chance - 2 days old

By the end of day 2 Chance made huge progress. First, he opened his eyes, for the first time that we saw since his birthday. It was the first time I ever saw his eyes open…and definitely left me teary eyed.

Finally his eyes are open!!!

He also had all his IV’s removed. It was the first time I could touch his tiny hand and feel as though I could admire his little hands…without all the medical things going on.

No IV's

It was also the first time we as a family were able to visit Chance. It’s the moment we’ve waited for long before I ever became pregnant and here it was, and despite all the worries, it was so uplifting to see Hope and Jaylen’s excitement. Jaylen ironically just began saying Chances name earlier that day.

Jason & Jaylen admiring Chance

Every night Jason would go home to be with the kids and I’d remain in the hospital recovering. I’d take at least one trip down a night to see Chance. On day two I visited and was shocked to see a nurse feeding him a bottle and seeing him laying on his side. Yes, he made huge progress…it was the first day he ate on his own and proved he had no troubles eating. The nurse fed him most of the time. He was just eating about 1/2 – 1 oz at a feeding. She even allowed me to feed him for a bit with the bottle. It was so uplifting to see him making the progress because I knew it meant he was that much closer to me being able to nurse him for the first time.

bottle feeding

3 DAYS OLD: February 25th, 2011
By day 3 I was growing more anxious to see Chance during the day and praying he was growing stronger each day so that we could both go home in a reasonable time. I had been pumping in my room in hopes that he’d soon be able to nurse. I have to say that was the hardest part for me the first few days. I recall with Hope & Jaylen that those moments were the most memorable and I felt so robbed out of these moments with Chance. But I knew the moments would come eventually so I pumped, and pumped…and every 2 -3 hours I was connected to a pump in hopes I’d build up a supply to feed my little man. By day 3 I was growing more and more frustrated. Sure I was pumping a bit, but maybe a few cc’s, deefinitely nothing to brag about. When Jason finally arrived at the hospital I was in my routine to pump, something I couldn’t break or it’d affect whether or not I’d ever end up building a supply.
So he headed down to the NICU to visit Chance. When he did Chance’s neurosurgeon and neonatologist doctor were in the NICU discussing Chance’s progress and how they’d proceed. Jason couldn’t run back to my room fast enough to tell me that I could finally hold AND nurse Chance. It took me by surprise and left me emotionally overwhelmed but so happy for the moment to finally arrive. We were told to arrive downstairs about 15 minutes before Chance’s next feeding.

Jason called Gian Carlo Brand, who had already planned to stop by the hospital to visit, and he managed to break free to help photograph the moments. I admit I’m one of the most private people when it comes to photographing things like nursing my child, but I knew it was a moment I would never get back. And though I know I could have asked anyone to take pictures, Gian Carlo was one of the only people I truly trusted to capture the moments in a tasteful way that would not prevent me from wanting to look back at the moments or share them. Thanks to him I have a handful of my favorites that certainly help me share just how special of a moment this was for my family.

Getting ready to hold & feed Chance for the 1st time

I still remember holding him for the first time. He cried. I cried.

Holding Chance for the first time

The big reason why I was not only allowed to hold him but I could feed him was because he could now lay on his side when he fed and seemed to be doing well with bottle feeding. The hopes were that introducing him to nursing early would keep him from getting confused and thankful his doctor understood how much I hoped to nurse him. Even with it still being so early there definitely were fears with how well he’d transition. All babies are different and there were no guarantees he’d latch on.

First time feeding Chance

But he did…

First time feeding Chance

In just a few minutes he seemed to be a pro at nursing…
Chance nursing

But the little stinker was hungry. Because I hadn’t been nursing him the first several days and the first two days I was not on a routine, I knew my body was not only not producing enough for him yet, but that it was likely much harder for him and I agreed with the nurse – it was better to give himĀ  a few minutes of the experience and to continue to reintroduce nursing every day as my supply increased. So we paused and she gave me a bottle to feed Chance. As much as I’m an advocate for breast feeding, I knew he needed to eat and my body wasn’t quite ready to produce what he needed. So I gladly fed him formula.

Feeding Chance for the first time

Once he finished, he was so snuggly. Yes, just one more thing I missed experiencing the first few days.

Holding Chance for the 1st time.

I can’t say it totally made up for those first few days, but it helped remind me that in time he and I would be home together.

Holding Chance for the 1st time.

Holding Chance for the 1st time.

Chance did still have his feeding tube in. It helped the nurses monitor how much he was eating. The nurses told me it also helped them remove the gas from his belly to help keep him comfortable.

Holding Chance for the 1st time.

Yes, it was my first time holding him, and I was already day dreaming of being home being able to take his newborn photos. He let me play with positioning his arms and head. He was such a good baby boy.

Holding Chance for the first time.

Gian Carlo took two of my favorite photos that day that have yet to be taken of my baby boy. The first one you’d never think was taken in a hospital.

Chance -

The second, to me is the most iconic picture I have of Chance that represents his beginning as a child having spina bifida. Chance may have spina bifida but in just over 3 days he’s proven that spina bifida won’t define him. Yes, I got to hold and feed him ahead of schedule because he made it very clear he was ready…and that is nothing short of amazing.

Spina bifida will never define my baby

Yes, my baby boy is amazing me a little more every day.

Holding Chance for the first time.

Here he is a day later, again laying in the prone position as we pray for him to continue to heal.


4 DAYS OLD: February 26, 2011
I was discharged from the hospital Saturday morning. It was an odd feeling knowing how happy I was to finally be home, but it’s tough not to be sad thinking of leaving my baby behind. We returned to the hospital later in the day. You know my emotions have gotten the best of me when I have very few photos from the day. What I remember most was Jason holding his baby boy for the first time. Something he was nervous about, came so naturally. He’s so proud of his baby boy.

Jason & Chance

This entire experience has been so tough on both of us. We have moments of feeling so much happiness and at the same time our hearts stop momentarily as we realize each time we visit him now that we must eventually leave to return home to our kids and leave him behind.

admiring Chance

I suppose as much as our heartaches, in the end it’ll make us stronger…or so that’s what we’re continued to be told all these years as we’ve faced adversity.

Daddy's boy

5 DAYS OLD: February 27, 2011

One of the most memorable moments we had with Chance in his first week of life was taking the kids to visit Chance. It was feeding time when we first arrived so I got to pick him right up on my own and feed him again. After a few attempts where he’d make an effort to feed, he also fussed. Only nursing him a few times I began to wonder if he really wanted to eat. He’d fuss. But he also seemed to be pooping so I wondered if maybe he had a belly ache. He was very alert when I let him back away from nursing. So I took it as a sign that he was more interested in looking around because he seemed very curious.

Checking out his family.

While Jason was taking photos, Hope was taking this video that will help you see just how alert he was.

Yes, Chance was not only alert but he sure seems like a happy little fellow.

Yes, he's a happy fellow

I have to thank Jason this week for his willingness to take photos. He took that last photo of Chance that is among my favorites. I admit my hands are often occupied these days with Chance, a pump, or I’m just feeling fatigued both physically and emotionally that he has stepped up to help capture some of these moments with my baby boy.

Last night was also the first night that Jaylen was willing to touch his baby brother and he gave him kisses. Just a quick iPhone photo of the moment.

Jaylen touches his baby brother for the first time

DAY 6: February 28, 2011
We should have expected setbacks. In all that I’ve read of other families who have went through similar journeys, setbacks are inevitable. We greeted the morning happily knowing that we were closer to Chance finally coming home. We were told he was moving to “pod 8″ which is a sign that he’s one step closer to coming home. We knew he had an ultrasound remaining of his head and prayed we’d continue to hear good news. His doctor called just prior to us leaving the house to head to the NICU. Thankfully the ultrasound of his head showed he was stable. However, overnight the nurses reported that his back had showed signs of drainage/leaking fluid. So when we left for the NICU the hopes were to monitor it and hopefully he’d be home by Wednesday. We visited him and then attended a car seat / CPR class required for all NICU parents. On break we stopped by to visit Chance to find him with his doctor. Poor little guy was undergoing having a few more stitches put in his back where the drainage seemed to be coming from.

I know, you’re probably asking, just like me…how did this happen…his back had looked so great. The night prior I recall pointing out the nurse that he had pooped while I was feeding him and I was concerned that it might have reached his back. I’ve had pretty swollen feet the last few days so the nurse suggested to go home to rest and that she’d take good care of him and they would take a closer look at his back. Apparently newborn skin is very thin, and it’s likely that it’s so thin that as it’s healed the small section in the middle just needs extra time healing. So he had a few more stitches put in to help keep his back completely closed.

The great news…his doctor is being very cautious and doesn’t want to take any risks. The bad news…he now had to be in the prone position for at least another 2 days. This means he had to have a feeding tube put back his nose because he can’t eat from a bottle or nurse. He has to lay flat and as still as possible for the next two days. It brought me to tears…again. This means the earliest he’ll be home is Thursday. And I’d love to count down till that day but really we will just have to see how he does. Now all we can do is continue to pray for my baby boy because we’re all so ready to have him home. I’m again thankful Jason took photos for me today, he took this one just before we learned more about his back.


So that’s where we’re at…nearly one week after my baby boy was born, he’ll celebrate his one week birthday in the NICU. Hopefully you all feel a little more connected to just how much of an emotional roller coaster this past week has been for our family. Now we continue to pray and remain hopeful that he will be home soon. Thank you all for your continued prayers, warm wishes, and countless messages – many of which I have not been able to return because of how hectic and emotionally overwhelming this week has been. Regardless of if you’ve head back from me, please know I’ve read every single one and that I’m equally trying to recover from surgery. Hopefully we’ll have another update soon with more uplifting news.

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February 28, 2011 - 10:38 pm

Kim - I know it seems huge now, but it’s just a blip in the big picture, Amanda. Lord be with you all as you journey though this difficult time…

February 28, 2011 - 10:43 pm

Jaime scott - Exactly one year ago, hudson was in the nicu and I remember how hard it was leaving him each day and counting down the days till we got to bring him home. it was an extremely hard month for us, an emotional roller coaster for sure, and we didn’t even have the added concerns of surgery and recovery. I pray that chance will heal quickly and you get to take that sweet boy home very soon.

February 28, 2011 - 10:46 pm

Katie - awwwwwww so precious! he is such a cute little guy! congratulations to you and your family and welcome Chance!!

February 28, 2011 - 11:19 pm

kristy pennino - awesome. i’m amazed by how focused, alert and mesmerized by his daddy chance is! :-)

March 1, 2011 - 12:17 am

Rachel Mayer - *tears* praying for you and that perfect baby!

March 1, 2011 - 1:11 am

Nicole Summers - He is just so beautiful Amanda. I know it’s hard not being together right now but he will be home soon. You have been blessed with this precious little boy. I assure you he will continue to amaze and impress you with all that he will accomplish. His back looks great and I’m confident will heal very nicely. My daughters opening was quite large and she was (is) very tiny and it’s healed beautifully.

We will be praying the Chance continues to heal and that you will all be home as a family as you should be.

March 2, 2011 - 9:56 pm

monica russo - amanda
i have a three year old with sb and i followed your story on babycenter. your little boy is adorable. i feel your pain that this is not how the birth of your child should be. you should not have to think of the nicu, back scars, numerous doctors etc…but this will pass and life will be more normal then you ever thought it would be. it is ok to feel these feelings and i wanted to validate them for you.
however, you are going to experience so much joy over the little things that people take for granted that your little boy will do. it is a joy and a sense of pride that i have never experienced in my entire life. your photos are absolutley incredible. i will continue to pray for your peace of mind and the health of your baby. sincerely, monica

March 4, 2011 - 5:05 pm

Paris Carter - Please, I MUST have that photo that Gian Carlo took-his fatty cutie face so close up. I would love to have it on my iphone as a reminder for strength. Chance is such a fighter!

These photographs are beautiful and you are doing extraordinarily well emotionally Amanda.

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