Hopefully those of you reading my blog often aren’t in withdrawals. It’s been just over a week and we’ve managed to stay out of the hospital. Yes, it’s reason to celebrate that a lack of updates is a sign that Chance is doing well. We’ve been spending time at home together. It’s kind of funny how being stuck in a hospital for so long can cause you to celebrate some of the simplest of moments.

This past week marked the trifecta of moments for our family as our 14th anniversary, Jaylen’s 4th birthday, and my birthday passed three days in a row. It was tough for us to hold any big celebrations between just rebounding from the hospital and juggling our crazy work schedules. We’ll likely have a party for Hope & Jaylen together soon seeing how their birthdays fall so close together. Thankfully this sweet little boy of mine isn’t so obsessed with the thoughts of his birthday or parties so instead his special day we spent with just him and helping remind him just how loved he is. This was taken the night before his birthday when we talked about his birthday and asking him how old he’d be. It seems like I’ve blinked and my baby boy is now four. I’m still not so sure how that happened so fast.

The kid’s birthdays are always that milestone that make me pause and reflect on how much they’ve grown. I suppose I’ve been pausing all week knowing I’d write on my blog this week with sweet thoughts about my baby boy, like how:

• He’s the best big brother ever. No, really, he is. He runs to help Chance anytime he cries. He’ll lay next to him trying to “shhhh” him to sleep. He’ll pat his back. He’ll sit and sing patty cake or show off his toys to make his little brother smile.
• He’s the best little brother too. He adores his big sister. When she’s at school or playing with friends he tells us how much he misses her.
• I am totally in love with every time he tells us all that he “lubs” us.
• He’s still reserved in how much he cares to talk, but he’s begun to say much more of what is on his mind these days. I use to be worried about how little he talked…now I’m convinced that he’s just smart enough not to share all this thoughts out loud.
• He still loves to talk in color. You know…saying he wants to go to “red” is target. “red & yellow” is McDonald’s. “red & white” is chick-fil-a. “green” is publix. “green & yellow” is Olive garden. In the last month or so he’s finally started to say some of the names of these places but I’m still fascinated by how he identifies places by color.
• His smile makes my heart melt.
• He would eat ego cinnamon toast waffles every day for every single meal if I let him. And he’d have chocolate milk just as often.
• He’s my gadget kid. He can work my iphone and ipad better than I probably can.
• He’s convinced he’s a superhero. Batman and spiderman are his favorite these days. But really every single superhero he loves. Of course he’s my kid…so being a superhero kind of goes along with being in our family.
• His favorite toy these days are squinkies. He’s obsessed with them, especially the superhero ones. They’re the type of toys that are so small that they get lost easily. I’ve lost track of how many times he’s been devastated after he’s lost his spiderman squinky.

On his birthday I elected not to obsessively take photos of him. Yes, I know…sounds odd, right. By the end of the day I realized I had yet to take his photo and asked him if I could take just one photo and he said yes. He sure knows how to make my day!

Happy 4th birthday baby boy…

A lot of you have been asking me how Chance has been doing since we got home. Thus far he seems to be doing well with his new shunt. It’s inevitable though…I am paranoid. Watching him go through 6 of his 11 surgeries in just over 2 months time leaves me quite nervous. He’s been far more clingy this past week and preferring to be held or cuddling most times. So any time I am able to sit him down and he’s content I am appreciative of.

Being out of the hospital for a week has left me admiring some of the simplest of moments. Like the boys playing superheroes on the iPad.

Aside from facebook going off a couple hundred times with so many sweet birthday wishes the day was rather uneventful. The best sentiment received was given by my baby girl in this little card she had made for me before she left for school. Little does she know it’s the most perfect and special gift I received.

At times this week I began to feel like being home was almost more challenging than being in the hospital. Chance was super fussy and clingy at times and here I began to wonder if he was on the verge of shunt problems, teething, or perhaps…maybe, just maybe…this kid was just too couped up and anxious to get out of the house. Of course…that was it. The few times we went out for brief moments he cheered right up. Saturday we elected to take him to our niece Raven’s special day at the Down Synrome walk in Orlando. He was quite excited to venture out.

We spent a little time yesterday morning spending time with Raven at the walk. We hesitated in the decision to go because Chance has only been out of the hospital a week and his head still has a ways to go before it heals more so we know he’s at a higher risk for infection. I’m sure we’ll have his doctors shaking their heads at us for taking him out but given how well he’s been doing we decided to take a “chance” and support our sweet niece for a brief period of time. When his doctor sees this photo of him and his Uncle Erik hopefully she knows that Chance must have been trying to tell us that he was worried she might not approve of him being out.

Raven turned two this summer and now has such a sweet personality. Here she was in one of my new favorite photos of her as she celebrated at the walk while riding on her daddy’s shoulders. I sure love that smile!

Now I promise, I’ve been trying to take more photos of Hope & Jaylen but they really prefer to have little to do with my camera lately. After the walk yesterday I made an attempt to photograph Hope and it totally captured her mood lately. My baby girl has been so worried about Chance this year. She’s also at the age where she wants to spend every moment with her friends and having fun so she’s sure to be opinionated when she doesn’t get her way. I’m not so sure how much telling her I love her or thanking her for being such a great big sister & daughter will mean in the years ahead but I’ll keep telling her…and pray she never forgets just how incredibly special she is.

The past week Jason and I have resumed our schedules and things certainly so no signs of slowing down. But that’s okay…any and every day that we’re out of the hospital with our baby boy is a reason to celebrate.

I promise there have been many more busy moments beyond what you’ve read & seen in this post. I can’t wait to share all the walk-n-roll stuff I’ve been working on…I promise you’ll hear more about all that soon enough.

What a whirlwind this week has been. Typically this week is one of the busier weeks of the year for me as we’ve approached final exam week at Valencia I’ve been immersed in lots of grading as the semester comes to a close. Add in finishing up some tenure track training, photography, and helping out with the fundraising efforts for the spina bifida walk-n-roll and I must say I never imagined this week would end up like it did. Chance has now had six surgeries and thankfully we’ve finally made it home. It’s kind of scary how quickly life can change. I know we expected to have challenges arise due to his spina bifida…I suppose we were hoping we were past the biggest concerns…but we quickly learned that when we least expect it spina bifida can through unpredictable moments at our baby boy. Though I’m sure I could write forever about the rollercoaster of moments we’ve experienced, I find it easier to share through some of my photography a glimpse at what we’ve watched our baby boy endure. Once again he proved to be a tough little soul who continues to amaze us. Here’s a look back at the last 48 hours since we arrived at the ER through to bringing our baby boy back home…where he belongs.

Yes, finally he’s home…now we’ll keep praying that shunt continues to work well and has no issues. We’ve set up his crib so the mattress is elevated to help prevent swelling and he’s sleeping almost in a “nest”. Thus far it’s working. We return next week to the spina bifida clinic…where we know he’ll get lots of TLC from all the doctors who definitely have grown to love him as much as we do. Thank you all again for all your prayers and wishful thoughts…there’s no doubt how much our baby boy (and our family) is loved.

It’s about time I do another photo session giveaway. It’s time to do something pretty awesome. I sure do love to give when I am able to…especially when it’s towards a cause that’s worthy. This time it’s a cause that has impacted my family heavily and I hope it will be something that you all are interested in helping me with.

A little over five months ago Deputy Brandon Coates lost his life while working protecting our community. It was a night I certainly won’t forget. My husband worked directly with Brandon. They were on the same squad working as a part of a tactical high crime unit. My husband was one of the first on scene after Brandon was shot. He and his squadmates now live with the memory of that night. I still recall receiving his phone call that night when he told me Brandon had been shot. He was shaken and wanted me to know that if I watched the news that he was “okay”. A moment later I learned Brandon had been shot. As I continue to be so thankful that it was not my husband standing in Brandon’s shoes that night, my heart still aches to know that such a good man had to lose his life protecting us all.

Late last month Valencia honored Brandon with a memorial service at its Criminal Justice Institute. Brandon was also a graduate of Valencia’s law enforcement academy. At the memorial it was announced that Valencia has established a memorial scholarship fund in honor of Brandon Coates. An initial donation of $500 was made towards the scholarship by students currently in the program. I was informed by the foundation that a $3,000 minimum is needed to officially establish named scholarships.

As you can see…this scholarship is very valuable and means a lot for us to get started. As a faculty member at Valencia I certainly would love to have a scholarship established that will help our students achieve their career goals, especially those brave souls who wish to enter into a career in law enforcement. It’s so important that we all do everything we can to help support causes like this that will help train law enforcement officers to serve our community.

Something tells me Brandon is up there rooting for you all to help us get this scholarship going. So once again, I’m ready to give and hopefully you might be too. In honor of Brandon Coates I’ll be giving away TWO photo sessions very soon. Check out the details below if you’re interested in helping me. I’m not asking you all to give much to help me and to have a chance at winning a photo session with me. And once you’re done reviewing the details I’ve included a slideshow of the photos I took at Brandon’s memorial services in December. Perhaps if you take a moment to view the moving moments as so many in central Florida gathered to honor such an honorable man it’ll help remind you how important it is to help donate to this scholarship. And even if you’re not out to win a free photo session with me, you can still donate to help out however you can. Every little bit counts. You may enter to win the photo session through June 8th, 2011 at 2pm. June 8th marks the six month anniversary of Brandon’s passing. I’d love to say on that day, or earlier, that we’ve met the scholarship goal of $3,000. With your help I know we can do it.

FREE PHOTO SESSION ELIGIBILITY
Here’s what you have to do for a chance to win a FREE photo session for those who care to participate.

• Go to the Valencia Foundation web site and Make a minimum of a $10 donation to the DFC Brandon Lee Coates Memorial Scholarship. Make sure you select this scholarship as the “designation”.
• Email me proof of your donation to amanda [at] amandakern.com – to do this either take a screenshot of the confirmation page or proof of payment. Only email proof of your donation if you are entering to win a chance at a free photo session.
• When emailing me share with me your name, contact information and the ages and number of people of who you wish to be photographed so that I can get back in touch with you if you are chosen.
• You may only enter to win a photo session once, however, you may donate as many times as you’d like.
• To be eligible for the free photo session you must donate prior to June 8th at 2pm. The names of those who have helped me give will be put in a hat and I will let my little blessings randomly help pick a winner. Entries will ONLY be accepted until 2pm on June 8th, 2011.
  

Below is a screenshot of a donation. You may email me this or the email confirmation as confirmation of your donation. Please ensure you have set the designation for the scholarship to the DFC Brandon Lee Coates Memorial Scholarship.

IF YOU’RE THE WINNER…
If you’re chosen as the winner you will have two options.

OPTION 1: FREE PHOTO SESSION

• A free photo session with me that will last 1-2 hours for you, your family, or someone you wish to give the session to.
• The session will be valid through December 31, 2011.
• You will receive all unedited and edited photos in HIGH DIGITAL RESOLUTION format. Yes, I said FREE. That means I earn NOTHING from giving.
• You will be given permission to print and share online all digital photos for personal use.

*By participating if you win you agree that photos may be used in my portfolio.
**You must be in the immediate Orlando area or willing to travel to Orlando if you win.
***The value of a custom photo session w/high resolution photos is $650.

OPTION 2: PHOTO MENTORING SESSION
I’ve received a lot of requests and inquiries in the last year or so for me to offer “mentoring” sessions. I’ve lost count of how many people have asked me “how” to I do something or if they could just spend an hour or two with me to see how my photography and/or editing approach. If you are chosen as the winner you have the option to select the mentoring session and it will be customized to meet your needs.

• A free photo mentoring session with me that will last 1-2 hours. This includes the opportunity to sit in and participate in a photo session with me.
• The session will be valid through December 31, 2011.
• The mentoring session will be customized to meet your needs and could include tips on photography, editing or a combination of both.

*By participating if you win you agree that photos may be used in my portfolio.
**You must be in the immediate Orlando area or willing to travel to Orlando if you win.
***You are suggested to have a digital slr, photoshop and lightroom. If you don’t a mentoring session can still be offered but it may make more sense if you have access and/or a little previous experience to these things.

Below are photos taken at the memorial services held for Brandon in December.

It seems many of you keeping up with my blog, facebook or twitter have been a bit spoiled by my nearly constant connection to social media. I always laugh if I go a day or two without posting anything to at least one of the three that suddenly I get a handful of messages with people checking in. I’m really not connected 24-7 and this past week I definitely backed away from being so connected as I’ve been finishing up a lot of final preparations for the summer semester. And go figure the wonderful Florida weather left me with a lovely sinus infection just in time for Mother’s day and a brand new semester. It was definitely not the Mother’s day gift I was expecting at all…thankfully I’m starting to feel better. Anyhow, I thought I’d finally I thought I’d share a bit of an update…full of randomness from the last week or so and a few updates.

I suppose I should first wish you all a belated Mother’s day. Chance made sure to say Happy Mother’s day yesterday by sitting for a good 5-10 seconds without any assistance. It’s crazy that he can do that at 2 1/2 months old. Most babies I’ve been around don’t do this until 5-6 months old or later. He’s still wobbly and far from really truly “sitting” – but he did it and we got a few pictures! Yes, he’s one strong little dude…check him out!

It was definitely a team effort. Hope helped hold Chance and I trusted her to let go when he was stable. She did awesome. I promise there was no photoshop trickery done to take the photos above…we had to take a video of him sitting just to make sure everyone believed us.

This kid really has amazed us. Just a few days prior I was trying to take his photo as I noticed he was very alert and content. The little stinker kept trying to rollover, something he’s done since he was 3 1/2 weeks old. He did give good eye contact for this priceless photo.

I can’t say enough great things about Hope lately. She’s been so helpful with Chance which makes it much easier for me to get things done. This past week after he had his bath he was a bit fussy. He loves to cuddle. Thankfully Hope does too, especially with her baby brother. I don’t know who is luckier…Chance or Hope. Really, I feel like the lucky one to have such awesome kids.

Those that have seen the photos I’ve taken of Chance over the last 2+ months have commented how he’s such a great smiley little guy. This past week he’s really started to smile more. Not just in his sleep…now he smiles in response to all the attention he gets. I excited to finally get this one in a photo while he was awake.

Now that he’s no longer “newborn” I love getting to capture more of his personality and just observing what an adorable little guy we’ve been blessed with.

Last week I took a bit of time to visit Hope’s class. Every year I go in a few times during the school year to take pictures. Sadly, this was the first time I have been able to visit her class because the past year has just been too crazy to visit any sooner. It made Hope’s day…she’s been begging me all year to visit her class to take photos. Of course when I got into her classroom with my camera she wasn’t as thrilled that I was taking photos of her. I thought it was adorable to see that expression on her face as though she might have been less than thrilled for me to take her photo. Yes, her and her teacher were saying at the very moment this photo was taken that they though I was a “camera bully”. Just for that I took their photo. Hopefully Hope’s teacher is smiling to see me sharing this photo again…it’s one of my favorites. I’ll be photographing her twin boys in the next month. And you need not worry about Hope…by the time I got home from school she was telling me how much she wanted me to return to take pictures.

Our friend Blue stopped by this past week as well. He brought by the pictures he’s taken for our family before, during and after Chance was born. Yes, Chance will definitely grow up knowing we had such awesome people like Blue surrounding us when he was born.

I wanted to share just a few photos Blue took for us over Easter weekend. As usual, they are amazing and capture how blessed I am to have such an awesome family.

I seem to be bragging a lot about Hope & Chance and maybe some think I’ve forgotten about Jaylen…officially the “middle” child…just like me. Well, he’s amazing too. I thought for sure with his age that he might get jealous once Chance was born. That’s definitely not the case thus far. He absolutely adores his baby brother and has such a nurturing and caring spirit. At times I feel so bad for this sweet little boy of mine because he’s now not the baby…he’s the “middle” child. Of course he’ll always be my baby boy. Hope has since taking a preference for seeming to outwardly love Chance more. She refers to Chance as her little brother and Jaylen is her little “brother”…yes, just like the kids cartoon/book Olivia. She and Jaylen still get along but she has moments where Jaylen and her have become more competitive than prior to Chance’s birth.

Of course I adore this little guy. Every time I return home from work or going out of the house with out the kids I return home to him running to me all smiles and telling me, “Chance missed you!” And then proclaims aftewards, “me too!”

Today the summer semester began at Valencia. Though I taught in the spring prior to Chance’s birth, I only taught online. Today is the first time since December that I physically taught on campus in the classroom since December. It was definitely a welcomed return. Today’s class was electronic imaging where I teach photoshop among many other things. I am known to torture my students by dragging them out of the classroom for a brief period of time to take their photos to help me remember their names and so they then have photos of themselves to use as they begin to learn some basics about photoshop. As much as I enjoy teaching online, it was definitely awesome to be back on campus teaching today.

I’ll be sharing a way you win a free photo session by helping me make the Brandon Coates scholarship possible for Valencia students very soon. Oh, and…our friend Blue & his wife Jaya are getting ready to greet their baby girl any time now…so I can’t wait to share some sweet new baby girl newborn photos of their daughter with you hopefully in the next week or so.

I told Blue back in December that someday I’d blog about him after I took this photo of him.

I took that photo back in December when we got to work together doing photography for the first time participating in Help-Portrait and teaming up to photograph the Bosley Family that same day. It was certainly a memorable day and helped me look forward the months ahead as he and I discussed him helping capture moments with our family as well as moments surrounding Chance’s birth in February. I’ve known Blue since 2001 when I began going to school at Valencia while I was still pregnant with Hope. We’ve taken quite a few courses together and have worked together for several years. Many of you may know him as Gian Carlo Brand, his nickname “Blue” that he went by when we first took classes together still sticks with me all these years. Blue and I have known one another so long that he does seem a lot like a brother to me and I could think of no one better to have helped us in capturing some of the most personal and private moments with our family the last few months. Thanks to him we have some amazing photos to accompany the memories. Our family is so thankful to have such a great friend to share these moments with. He and his wife have been there for our family several times, not just to take photos but to reach out and show their support as we have endured some of the most challenging moments our family has ever faced. There’s no doubt that the adversity our family has faced has only strengthened the connection our families have with one another.

If you’ve been following my blog you may have seen the photos Blue took back at the beginning of February of our family while I was still pregnant with Chance. We planned to take photos again sometime after Chance was born. We’ve both been so busy but finally found time this morning to meet again for photos. I’m sure in time Blue will share his photos from today. I got a chance to take a few photos in between when I was in photos…so I thought it was worth sharing a sneak peak of some moments from the morning which I’m sure will leave you all a little more anxious to see his photos.

It was a beautiful sunny morning here in Florida. When we arrived we all chatted and caught up. Jason held Chance and we all admired how much he has grown since we last saw Blue when Chance was in the NICU.

Yes, watch out…I believe this kid might just be beginning to recognize my camera!

While Blue was getting his gear ready Hope and Chance spent some time together. Chance absolutely adores Hope…it’s so evident in this photo.

Blue spent a bit of time photographing Hope & Jaylen together. It’s always a treat to see how other photographers approach a photoshoot…he was totally immersed in the moment of capturing some adorable moments with these two cute kiddos of mine.

I think Hope might be Blue’s new favorite model after the last couple months. We all joked today that with as many photos as I’ve taken of her over the years that she does have close to 10 years of modeling experience.

He let the kids play and be themselves…yes, they wrestled…WWE style…sure we let them “power bomb” one another for a few photos. It was totally worth seeing the laughter and it certainly helped them open up a bit more.

After we took the majority of our family photos Blue agreed to fill up Jaylen’s water gun. It totally made his day…yes, I think it totally made both of their days.

While we were out we left Jason and Chance behind so that I could take some photos of Blue & his wife who are expecting their little girl next month. When we headed back Blue spotted this moment and quickly grabbed my camera to take this photo because his were all packed away in his bags far away from him. We all looked on and admired the moment of Jason and his baby boy as Blue took a photo of such an unforgettable moment.

Blue primarily specializes in photo journalistic wedding photography but is known to do a lot of other amazing photography of couples and events. It’s worth checking out his blog or facebook page to see some of his most recent work that I’m sure you all would admire.

Yes, Blue has become that much more special to our family the last few months. Taking this photo of him with the kids reminded me of that. He’s certainly someone the kids have gotten quite comfortable with. Jaylen now refers to him as “blue” and after both of the times we’ve had him take photos with our family he’s said “that was fun!” Yes, often times my kids are so tired of photos because I take so many of them on an almost daily basis and they definitely felt that way before we started to take photos today. However, Blue definitely did a great job connecting with them to help us capture more memorable moments…something tells me years from now we’ll look back and have quite a few amazing photos taken by and with this awesome photographer and wonderful friend of ours.

Blue thank you once again for helping us capture moments with our family…and helping create another memorable day.

I was joking this week a few times at work when people stopped me to tell me they had been reading my blog and how much they had enjoyed reading the updates. Until today it’s been more than a week since I’ve shared anything. Don’t go into shock…or withdrawals. Things have been a little busy and crazy lately and well, after this update, perhaps it’ll make sense why I haven’t been online quite as much this week on my blog, facebook or twitter. You can joke…I think we all know I’m the one in withdrawals of social media.

One thing that’s happened this past week is that I’ve been contacted by the International Federation for Spina Bifida & Hydrocephalus. They’ve expressed an interest in sharing a bit about Chance’s story on their web site and hoped to direct parents facing similar challenges with a spina bifida diagnosis to the many things I’ve written during my pregnancy with Chance and after his birth. They were among the many who reached out to me back in the fall when I was so unsure of the decisions we were faced with. I don’t think I realized seven months ago that those thoughts following the diagnosis and all the crazy thoughts I’ve shared since would really make as much of an impact as they have. I’ve had hundreds of people reach out to me – many offering support and advice and others seeking help for themselves as they’ve since been faced with the same tough news. I suppose all this time I’ve felt a little selfish blogging so many personal thoughts assuming people are reading (or should I say “listening”)…I’ve come to learn many are seeking to read my thoughts and that somehow they’re helping and hopefully will continue to help others.

When I was pregnant with Chance and we received his diagnosis I recall thinking that he’d be special and would impact the lives of so many others and felt as though his presence in my life would lead us to finding way to help others somehow. It’s kind of crazy this little guy of mine has helped move so many and that long before he was born he was helping others. Yes, there’s a promise for “hope” and a certainty that good things will come regardless of how many challenges we may be faced with due to his spina bifida.

In recognizing how challenging and moving his journey was to our family and because I know how important it is to hang on to all these thoughts I have begun designing a book this past month. It’ll essentially be a visual and written record of his pregnancy, birth and some moments in the weeks following his birth. I’ve considered doing this throughout the time I was pregnant with him and now that he’s here I know it’s important I do this for him and our family…and yes, for the many others out there that it may help. I’ve already been asked by quite a few people if I was planning to do something with what I’ve written on my blog…and the answer is…yes, of course. It’s far from “done” but here’s a quick glimpse of one spread…I’m sure you’ll hear more once this thing is finished.

The last week has also been busy with meetings at work and getting geared up to teach in the summer…yes, that’s just a few weeks away! I just shared a photoshoot on the blog and though I haven’t done any formal photoshoots with the kids I’ve continued to take tons of candid photos. Now that Jason and I are back at work it’s fun juggling the kids. Between Hope in school, piano lessons and softball practice/games we are learning to find balance. I have to admire this moment with Hope and Chance last week just prior to her piano lessons. I was in the midst of getting things together and getting Jaylen ready and looked over and she was practicing piano with Chance. She’s a little anxious to someday teach him how to play the piano.

This past week we also had family come in town to visit. Jason’s aunt & uncle flew down from Chicago. It’s their second visit since Chance was born and he certainly enjoyed his time with them. I really adore this photo during one of his alert moments with Jason’s aunt. He’s holding his upper body up really well these days.

For those of you who have followed along on my blog since Chance was in the NICU you may recall he had a panda security blanket that we had brought him when he was just a couple days old. When he had to have his first shunt surgery the NICU secured his belonging somewhere and we assumed they were in a safe place. We didn’t even think to ask about it because we assumed he couldn’t have it when he was being monitored so closely after his second and third surgery. We arrived home and realized it that day and contacted the NICU. Unfortunately they have yet to find it but we’ve been told everyone will continue to keep an eye out for it. Though it’s not the same as the original one he was given in the NICU we went ahead and made sure he had another, more for the sentimental memories that come with seeing it. Perhaps they’ll find the original someday, but if not we know just seeing it will bring back special memories with our baby boy.

My older sister also visited us to meet Chance for the first time. It’s the first time we’ve seen her since Jaylen was about Chance’s age. Chance was in love with all the attention he received this weekend.

Hope was quite thrilled to have her cousin Ashley visit. On Saturday they celebrated “caturday”. Yes, that’s what I said…”caturday?!” Apparently Saturday is a good day to get made up like a cat…and if you do I suppose Saturday becomes “caturday”. Okay, sure…whatever they call it they’re pretty funny celebrating the day.

My niece Ashley was here last summer when we learned we were pregnant. I recall feeling so bad during the time she visited and we got to do very little because I was so fatigued and nauseous. Seeing her holding Chance this past weekend reminded me of that week or so and I’m having a tough time believing how fast time has flown by since then. Ashley is the oldest grandchild in my family and Chance is the youngest…nearly 17 years difference. This weekend we were actually shaking our heads more because it seems like just yesterday that she was the itty bitty baby we were all holding.

Yes, balance is an important thing for me these days. When I’m home most things get done when Chance is sleeping or content or when Jason or Hope are helping. I returned from pumping the other day to find Jason and Chance surfing facebook…a totally priceless moment. Hey, whatever it takes for me to be able to get things done…right. Heck, I’m sure it’s only a matter of time before this little guy realizes everyone is talking about him on facebook.

Last night we got to go out grocery shopping as a family. Yes, it’s the little things that are important to me. Usually Jason and I work such differing schedules that it’s tough too coordinate much time together as a family and  usually errands are ran around what we might have going on so it’s rare we all get to go out together and with Chance so little it’s definitely one of the very few moments we’ve had together out and about as a family of five. Before we left I decided to take a quick photo of Chance & I while we waited for the rest of the gang to get ready.

Jaylen ran out beside us and shouted “me too”. He wanted to be in the picture too…which certainly makes me smile. And Jaylen tells me this picture is a “good one” of me and my boys. I agree.

Aside from all these busy moments I suppose I’m still settling into the realization that I’m raising a child with spina bifida. Things seem a lot more “normal” these days but I can’t say it makes things easier. I’d like to compare this challenge of knowing my baby boy has spina bifida like starting over caring for a baby like it’s the “first” baby. I find myself at times just as fearful and worried about the littlest things, though I’m sure things are just fine. I suppose I’m still holding my breath wondering what else could possibly happen. I’m sure reading so much about spina bifida in books, online, and on other families blogs haven’t necessarily helped eliminate all my fears…in fact, I almost feel like I know too much and it makes me a little more fearful. However, I know it’s incredibly important to know what “could” happen in the event we face additional challenges. So as I pause each time I feel a little worried I’ll try to continue to remind myself to enjoy all the moments and pray that his spina bifida doesn’t cause too many more worries as our baby boy continues to grow.

It’s been close to seven weeks and the realization that I now have three children has officially set in. Perhaps it’s in part since Jason and I have resumed work and are once again transitioning into a new sense of normalcy as we both learn to juggle the kids and work. I wouldn’t say it’s any harder…we have just learned to manage our time and priorities a little differently. This little guy has definitely become an important part of our family…and he leaves us all smiling that he’s now here.

So it finally hit me…I now have three kids. I’m really not stressing about that thought…just about trying to take a photo of ALL three. This evening I took the kids out to the park…yes, Hope and Jaylen deserved a bit of fun out for a change after being trapped in the house so long with baby boy. Afterwards I coerced them into allowing me to take a few photos. Their minds were more on playing and running around so I could already sense it was going to be a challenge. Attempt number one…Chance yawns. Then cries on and off after this photo.

Attempt number two…Chance is finally asleep and Jaylen who is totally obsessed with touching Chance these days (…he’s infatuated with his toes, ears, & hair…) decides he wants to fiddle with Chance’s toes. Something tells me my mother will find this hysterical because apparently I’ve been told I use to do nearly the same thing when I was a kid. It’s good to know he picked up this cute (yet frustrating for a photographer and sometimes for a baby) habit from his Momma.

Then finally just one photo of the three. That’s ALL they gave me and insisted on stopping. So yes, no more time to take a few different shots from different angles or zooming in. Just 3 quick split second shots that are a true testament of my life now with three kids. I’m sure I could have tortured them more…but hey, unlike the other families I take photos for who I usually only have an hour or two with – I have my entire life with these amazing kids and they need not worry…there’ll be many more photos of all three. Something tells me they’ll be better…but I’m quite happy with these photos because they’re quite real and memorable of the moments this evening.

A FEW MORE CUTE, FUNNY & NOT SO FUNNY MOMENTS WITH THREE
As the realization of having 3 kids hit me this past week I recall laughing as things happened here at home. I thought it was worth humoring and updating those of you who continue to read my blog.

• The “F” word is super popular in my home these days. Yes, I know…doesn’t sound good at all. But you can blame Chance for the “F” words increase in popularity. I’ve had three children now and have been around hundreds of other babies but I swear this baby boy can fart better than any baby I’ve ever encountered. Yes, he’d make any man proud. Of course the kids think it’s hilarious — many times during the day they can be heard in laughter saying “Chance farted”.
• Jaylen has been potty trained for a couple months now and continues to do super. He gets really excited these days and doesn’t even bother to tell us half the time before he goes. He cracks me up because every time he flushes he has to say “bye bye pee” or “bye bye poop”. Hey, whatever works so he’s 100% potty trained.
• We’ve gathered that Chance at times makes noises like a lamb, horse, and now he growls like a bear sometimes too. All of which are almost always made in his sleep. So yes, even though he’s thankfully going longer than every 2-3 hours to be fed, he makes so many noises that it’s tough to ignore the cute noises in our sleep.
• Hope continues to be an awesome big sister. She rushes home from school to hold him. She loves to carry him around the house…it’s almost like Chance has become her own little baby doll. Or as she told me, it’s almost like she’s a little Momma to Chance. I can’t complain because she’s been a huge help. For a while she would feed him, until she got spit up on. She’s not quite brave enough to change his diapers but I can tell she secretly wants to help with that she’s just scared she might get peed on.
• Because I’m nursing it seems that breastfeeding is a topic that the kids aren’t ashamed or embarrassed to talk about…or should I say joke about. Anytime I’m nursing Chance Jaylen almost always says “Chance eat boo-dees…hahahaha”. Yes, “boo-dees” is his way of saying “boobies” and apparently they’re funny for him to talk about. Every time they joke we have to remind them that they were once fed the same way.
• Now that Hope’s in the 3rd grade she has started to take FCAT’s this week. Yeah, the not so fun standardized test that so many third graders are scared to take. She’s a smart kid so it’s sad to know she was up the night before the first testing day crying because she was so nervous.

Today I decided to put Chance in another panda hat just to take a few candid photos. He was wide awake and alert. He’s been holding his head and upper body so well lately and I wanted to try to get at least a photo of him from his chest up with the hat on. As I noticed his strength I decided to try to trick him into sitting. I know he’s got many months before he really sits well but babies can often sit for a couple seconds before the tip over if they have enough support. So Hope and I tried today for the first time. I let her take the photos as I held onto him.

The end results were all a bit too blurry, even with the blur this one was worth sharing..because he did sit here for about 3 seconds before he tipped over and I caught him. Not bad for nearly 7 weeks old, eh. Something tells me we’ll try this again soon.

Life with three has definitely caused time to speed past me even faster. It’s a little shocking that it’s been nearly seven weeks since I had him and now I’ve begun to focus on the many other commitments. Somehow I’ll undoubtedly find balance. The added time at home was good but I joked today while on campus that returning to work may actually be a bit of a break…of course it also makes coming back home that much more rewarding.

While on campus today just about everyone I crossed paths with made it a point to say something like…”you look great”. I’m beginning to think that’s something everyone is required to say after someone has a baby. Of course a few others made it a point to mention I’ve lost weight and ask if I was exercising or on a diet. I suppose pregnancy this time around has been a great weight loss program for me. Since having Chance I’ve now lost 25 pounds and am just over 15 pounds beneath the weight before I had him. How that happens baffles me because I know so many women say they have so many issues losing the weight after having a child especially after having a few children. Thankfully thus far that’s not the case for me. I can’t say I’m on a diet and I definitely haven’t begun working out because physically I’m still recovering from the c-section. I’d love to say I’m 100%, but I’m not. I’m able to do a lot more physically but it still hurts moving in some of the simplest ways which I’m sure is due to the muscles (or lack there of) healing. Of course I am nursing and pumping and am confident that’s a huge reason why I have lost so much and could possibly continue to lose weight. I bet if I weighed all that milk in the freezer (over half of it is full of milk) that it’d probably weigh close to what I’ve lost. Now if I could just recover enough physically to work out again I might actually feel like I’ve lost that much weight.

Since before Chance was born I knew I wanted to take some photos of Jason holding Chance. Yes, Jason typically despises my camera…though secretly I know he appreciates me taking so many photos even if my camera annoys him sometimes. I really dreamed of the photos of Chance being itty bitty and brand spankin’ new in his hands but when we were in the hospital so long I realized the little guy wasn’t quite the curly newborn I envisioned and instead I plotted out all the newborn photos you’ve seen to date. Then this weekend I photographed another newborn…I’m so close to finishing the photos to share…but in doing the photos I realized Chance wasn’t really that much bigger than a newborn. I suppose he is pretty tiny…he just isn’t too curly like most newborns. So I told Jason he had to cooperate for a few photos. Thankfully Chance only took a few minutes to pose and remained sleeping long enough to get the perfect photo of our little guy. Yes, this guy is definitely a gift from above and this photo certainly helps us remember that.

Just this week Chance has seemed to get a bit more clingy and seems to prefer to be held by me a bit more often than with others. It definitely is an uplifting feeling for a mother, but also an exhausting feeling at times, especially when you have lots to do! That was the case earlier this evening…so Chance sat right beside me and we got some things done together.

Yes, life with three is definitely full of so many moments that I’ve found so memorable…so much so that it’s tough to imagine life now without three kids. As a photographer all too often I hope to capture, and perhaps create moments that end up being memories that others will never forget, and I suppose what I’m beginning to learn more and more every day is that along with that the more important thing to do is appreciate all the moments as they are happening…every one might not be picture perfect…but in my books they’re still perfect memories for me to appreciate.

As many of you have been reading my blog and staying updated through twitter, facebook and flickr then you’re likely aware that I have been readmitted into the hospital. Total bummer, but we suspected it might happen when the medication prescribed Tuesday didn’t seem to be working. Though I began to feel a little better Wednesday by Thursday it all hit me hard and I realized by Friday I would be calling the doctor. I think back to Thursday and it was a day I tried to rest even more. I let Jason visit Chance without me in the morning and preferred to stay home to rest. Thankfully he took a few photos and videos. Like this one…seems like baby boy was feeling my pain.

Chance made great progress overnight through Thursday since his shunt was put in place. He was still on a feeding tube and the doctor’s could tell he wanted to eat. I was told by the doctor and Jason that he nearly chewed through his pacifier, even though he’s been on a feeding tube – it’s just not the same and at just 9 days old he’s smart enough to know that. So they let him feed that morning for the first time – and I’ve continued to pump all this time so he got his fair share of “boob juice” (as Jason calls it).

I decided against going in the morning to the NICU because I preferred to go in the evening with the kids. I admit more than one trip leaves me feeling very fatigued and the pain was just too much for me to do more. I was so happy to go in the evening, though I spent only a few brief moments near Chance because it just hurt to much to stand or move around. But I did get to see Hope feed Chance for the first time. Aside from me & the nurses, she was the first to feed her baby brother – something she’s begged to do since the day we found out I was pregnant. It was evident that Chance recognized her presence. He was alert and began to stare at his big sister.

We returned to the NICU Friday morning to not only visit Chance but to be apart of an interview with Lauren Rowe of Channel 6 news. They were doing a special that is suppose to air on March 15th covering both Arnold & Winnie Palmer hospitals. As we waited, I admired Chance.

Yes, he slept right through his first media appearance. He was such a good boy though. Lauren Rowe & Dr. Alexander discussed the NICU as well as some of what Chance has been fighting since getting admitted into the NICU.

We got to chat with Lauren about our time in the NICU, a lot about Chance, and more about spina bifida and how it has affected him in his first 10 days of life.

Chance was assessed by the neurosurgeons after our interview. It was something they were able to capture video of after the interview. They were checking his back for leaking. In the morning it was still leaking a bit and was expected to continue to leak without intervention. They applied durabond in hopes it would help seal the leak. It was applied a time or two and by the night time it seemed to be working. If his back stops leaking we should get to hold him upright Friday and possibly go home Tuesday. If it doesn’t stop leaking it could lead him to another surgery to rework the stitching now that the fluid should be minimal now that he has a shunt in place. He was a cooperative little guy for the neurosurgeons.

As the neurosurgeons were working, I got to see the scar for the first time along with the remaining stitches. The blue stitch is where the leak seems to be continuing to happen. His wound looks so awesome now aside from the area where they’re still trying to stop the leaking.

By the late morning I was in a lot more pain. So as Chance was ready to be fed Jason jumped at the opportunity to feed him for the first time. He’s such a good daddy and spends time talking to him a lot when he’s awake.

While Jason spent time with Chance I was sent to pump milk for baby boy. Jason stayed and helped the nurse give Chance a bath. He gets pretty fiesty and doesn’t seem to like baths. I’ve heard after wards he enjoys feeling fresh & clean though.

DEJA VUE
Yes, as I sit in the hospital bed writing this latest update, I feel like I’m reliving parts of October 2009. Except so much more complex…I now have a baby boy who needs so much of our love and attention. He requires more of my energy and yes…food…I’m up often making sure I provide what he needs. I never imagined back then I’d feel so blessed, yet still so cursed. Yes, the pain never went away and actually got worse since being discharged. I feel miserable. Seems like  someone has stabbed me on one side of my stomach and the other side cramps. Sitting or standing is a painful ordeal for me. As is getting in and out of bed. I’m fatigued and have slept a lot more. I’ve had a lot more headaches the last couple of days. 11 days post partum I shouldn’t feel this awful. My doctor has been amazing and doesn’t take any risks of me getting worse. He was the same doctor that admitted me back in October 2009 and assured me he’d help me feel all better and I have the confidence that he’ll do the same this time. I’m on a triple dose of heavy antibiotics that we pray get rid of whatever might be going on. All lab work showed no signs of infection, but I was told some organs like the uterus don’t typically show signs of infection until things get really bad.

The only positive thing is that I am closer to Chance. I have to admit I don’t have much energy to get up to visit him though. These antibiotics make me feel more fatigued. They taste and smell awful. I wouldn’t wish them on my worst enemy…yet, I have confidence they’ll work. Last night I had an allergic reaction to one of the antibiotics – Unasyn. I suspect it has sulfa drugs in it but not sure. All I remember was getting hives and my throat feeling swollen. Pretty scary stuff that brings me to tears when it happens. I should be out of the hospital by Monday morning if these antibiotics work. If they don’t I’m scared to know what is next. The on call doctor today said they’d likely do a CT scan to get a better view of things internally.

PRAYER…
The last few months, but more so the last few weeks, I admit I’ve found myself wondering …”how much do I have to pray?” I feel like I’ve been praying non-stop. I’ve kept the “faith”. I’ve tried to remain “optimistic”. I’ve continued to “believe” things will get better. But now I wonder when. I’ve tried not to “doubt” the plans that are in store for us. I admit the plans still don’t make any sense. I’ve heard people tell me “God won’t give you more than you can handle.”  Really, how much more am I expected to endure – I’ve had to go through more in such a short time than most ever go through in their life. Yes, prayer. All the talks of prayer now make me feel more helpless and bring me to tears…I feel like that’s all I’ve done and here I am feeling more weak and helpless…again. Me and my family are completely worn down. I just want to be home…with my baby. With my kids who miss some normalcy. With my love who is feeling just as drained. You guys can do the praying now…and maybe it’ll work. As for me, I shall rest.

Since Chance was born a little over a week ago I have to admit rest is not something that has come easily for me. With each new day comes an added worry, fear, or merely missing my baby boy who I wish were home with us already. I’m pretty sure that this has only complicated my own recovery, not to mention I am up either pumping milk or taking medication necessary to help me recover from my own surgery. Last night, I was up at 2am doing just that. I’ve gotten onto a routine to take medication as necessary and pumping every 3-4 hours. Yes, here’s the 2am dosage that left me eating lucky charms just after 2am to prevent getting nauseous from the medication.

I had a tough time getting back to sleep. I hear mother’s have this “intuition” when something is wrong…and I suppose that’s why I couldn’t rest. I admit it’s tough for me to lay in bed after the day prior feeling as though someone had stabbed me in the stomach so I sat in the comfortable glider in our room and wrote one or two friends who have helped hold me together the last few years. I found myself dozing off and at 530 I jumped up faster than I have since the surgery when the phone rang. Instantly I wondered who could possibly be calling at 530. It was an nurse practitioner with the NICU who called to update me on Chance’s progress overnight. Jason and Hope had left him the night prior doing quite well but in a few short hours he made some concerning progress. The fluid in his back built up more. He began to run a 99.4 fever. To be safe they began an IV antibiotic in his head and took him off all feedings. His head ultrasound performed overnight showed his ventricle measurements had increased again and they had ordered a CT scan to help his doctor see what he was challenged with. The nurse said they were preparing for the possibility of Chance going in for a shunt surgery later in the morning. The initial call was more of an update, but coming at 530 in the morning it left me anxious, emotional, and in tears worried knowing they wouldn’t call if there weren’t concerns.

A few minutes later I hear Jason’s phone going off, which was on vibrate mode, it was Chance’s doctor updating us on her plans for Chance later that morning. She felt is was necessary to intervene after giving his back time to heal the fluid seemed to have no where to go. She feared it could potentially cause two things to happen – either the sutures would continue to be challenged by the build up of fluid or it would begin to put pressure on his brain. She felt it was finally time to intervene and have Chance undergo a surgery to place a shunt to help drain the fluid from his head. It was something we all hoped to avoid, but the odds weren’t in Chance’s favor. About 90% of all spina bifida patients require a shunt in their lifetime. All the praying and optimism in the world didn’t spare him from needing a shunt. Once a shunt is placed it remains in place for lifetime unless an infection or malfunction occurs. About 50% of shunts malfunction at sometime in a patients lifetime. Chance went in for surgery just after 730 in the morning and we waited to hear his surgery went well and that it was now time for his shunt to do it’s job. I’ve been told by many who escape a shunt that leaving a hospital without a shunt can leave sometimes more worries than one being put in place. So we were ready to move past this phase, knowing that it would help him once it began to do it’s job.

We finally got to see Chance a few hours after surgery once he was transported back to the NICU and was stabilized in his new room, the ECMO room in the NICU where nurses would keep a very close eye on him until he recovered fully from surgery. Chance was a little restless, but do you blame the little guy – he had a respirator in place and looked a bit uncomfortable with all the wires. The nurse let me stand beside him and let him hold my finger. He definitely recognizes my voice…it was evident today. He opened his eyes big and wide and calmed down for a short time. All I could do was cry as I watched him look so helpless…again. He looked at me as if he was praying I’d help him take all the wires out.

I was permitted to take photos of Chance in recovery. For most of the morning he rested. I tried to just admire him because any time I touched him he’d grow restless and less comfortable with the respirator.

It was a tough day for Jason and I, and we sat beside Chance majority of the day just admiring him and comforting him when he needed it. As Jason did so I began to notice his shunt more…along with Jason comforting our baby boy. Yes, as he grows he will grow into his shunt…but right now it bulges from his head because he is still so tiny.

Early in the afternoon as I returned from pumping, I was told by the nurses to look at Chance’s face as they smiled. As I did I noticed the respirator was finally taken out.

Most of the rest of the afternoon he rested as the nurses managed his care to ensure he was comfortable. A few times he let us know he wasn’t happy. He got pretty fussy a few times. I took this brief video on my iPhone of him fussing letting us know he wasn’t happy.

I think one of the most amazing things today was realizing how much my baby boy was just comforted by my presence. He would go from fussing to calming down just about any time I spoke to him.

By the end of the day I was exhausted. I could barely stay awake. So I curled up in a chair in the NICU as Jason sat beside Chance the rest of our time there. I’m so thankful he was interested in taking photos. He was beginning to get a bit more comfortable and was all stretched out.

Now we continue to pray that his shunt does it’s job. It was obvious it was working as his head where his soft spots were weren’t so poofy. In the final images Jason took you can see the shunt travels down to his belly which also will be less noticeable as he grows a bit more.

MY RECOVERY
I’m a day into taking the added precaution and I wish I could say I felt better. I am waiting for the anitbiotics to kick in. Until they do their job I am on pain medicine several times a day. I noticed mid day today that one of my pain medications only had 2 doses remaining, I feared I’d run out in the middle of the night and be in pain. I hate taking medication but if I waited more than 1 hour beyond when my dosage was needed, otherwise I’d be in pain making it tough to walk, sit or stand. My feet are still swollen and I’m exhausted. I called my doctor to call in a prescription because I failed to recognize how low my prescription had gotten for pain medication. It still reminds me so much of October 2009 and I’m just praying the antibiotics kick in soon. My doctor typically needs us to pick up the prescription for this type of pain medication to help me through the next few days. Knowing we were at the hospital he instead called the on call doctor and had him meet me in the NICU with the prescription. He reassured me that he prescribed enough to help me through the days ahead and that I should be feeling better soon, but if not to call my doctor back because they wanted to keep a close eye on me if I didn’t begin to improve. I was so exhausted when I got home that once I ate dinner I crashed and slept for several hours…something tough for me to do when I have so many people to update.

Thank you all for your continued prayers. It was overwhelming to hear this news – as much as we hate knowing our little man has a shunt – we are relieved it finally has a job to help Chance and hopefully in the weeks and months ahead he’ll forget all these tough NICU moments.

Today Chance turned one week old. He spent his one week birthday in a new room in pod 8 in the NICU. He’s now in a crib still sleeping on his belly. We arrived this morning to greet my baby boy all cuddled up with his panda and feeding from his feeding tube.

I don’t blame the little guy for fussing, I’m sure he’d much rather cuddle and feed normally too.

He didn’t fuss much though. He’s such a good baby boy and seems to usually only fuss when he’s hungry.

I admired Jason and Chance today.

Everyone who’s been keeping up with all we’ve been going through, especially this past week, usually thinks most of Chance and I and what we’ve been going through medically. I don’t think nearly as many people sense all Jason has had to endure. Sure he may not be going through much medically, but he has had to carry the weight of holding our family together once again. He’s had to juggle making sure the kids are cared for, numerous trips to the hospital to be there for Chance & I. He’s ran errands, picked up prescriptions, made sure everyone’s fed, kept up with housework and laundry. And to think he also feels the same emotional strain of watching our baby boy in the hospital, and now added worries about my own recovery. Yes, observing Jason today it was evident that the effects of the last week are beginning to wear on him. Thankfully he remains strong for all of us.

As tough as things have been, the mornings are when I am in the best spirits. I arrived ready to take photos of my little man. The nurse brought a chair and allowed me to lower the crib so I could photograph him. It’s the little things in life that make me happy.

That allowed me to take some really cute photos of Chance at one week old. As I sat and observed him he smiled several times, opened his eyes, and was just uber cute all around. I had my macro lens on so if he moved too much it didn’t give me time to focus, makes me bummed to know the really awesome smiles I just barely missed. This was the closest one I managed to take.

I adore when he purses his lips together.

When I had the camera focused perfectly to capture his smile I asked Jason to help me try to provoke a smile. It didn’t work, but I still love this photo.

Yes, I love my baby boy’s lips. I think they look more like Hope & Jason’s. Though I’m not so fond of him having the feeding tube in I know it’s what is providing him with the food he needs to grow stronger and is necessary for him to stay in the prone position so his back can continue to heal. I suppose it’s a love/hate relationship and only fitting that it make it’s way into this photo.

Chance is a smart little guy at just one week old. He heard my camera and heard me talking and he opened his eyes.

And smiled…

He seemed curious…

And then looked directly at me. Priceless moment to say the least.

MILK, MILK, AND MORE MILK
Now that Chance is back on the feeding tube I’m pumping more milk for my baby boy. I could be the one trying to take the easy way out and just rely on formula, but I know my milk is best for him. I hear so many say nursing is best for financial reasons – but really when it comes to pumping, bottles and more some may say it’s comparable. But I know after breastfeeding my first two kids that it’s the best for him. Not to mention, I do it also because of the bond it creates. Though I feel a bit cheated out of those moments in the first week of his life, I know his time in the hospital won’t last forever. So I find myself pumping every 3-4 hours. On average pumping 4-6 ounces every time. Today his feeding schedule has changed so he is now fed every 3 hours, 55 cc’s – which I believe is equivalent to about 2 ounces. So I believe I’ve reached the point now that so long as I can keep pumping, he can hopefully stay off of formula. Yes, the photo below was about half a day’s worth of milk pumped for Chance yesterday. Each bottle holds about 2 ounces.

Today Chance seems to be doing well. His back does not seem to be draining any since new sutures were put in. However, fluid did build up in his back around where the back was closed. Today his doctor requested consent to drain his back in hopes that it would prevent his sutures from opening or leaking again. Of course we agreed and continue to trust her advice is to continue to give Chance the best care to help us bring him home sooner. Tomorrow morning he’ll undergo another head ultrasound to see how his head is progressing. We continue to pray for my baby boy and hope he can be spared a shunt. I suppose I pray for once the odds can work in our favor instead of against us.

Hope’s teacher told me yesterday that Hope had written her weekly goal in her planner…for Chance to come home. It nearly made me cry. This morning she ran to me before she left for school to show off her goal, without me asking to see it. She let me take a photo of it.  I suppose the quote below her goal is only fitting for Chance.

THE HARDEST PART
Since learning Chance would be born with spina bifida I’ve had so many people that have went through the same tell me the hardest part was pregnancy. And that there’d be an emotional rollercoaster that followed but they kept saying the pregnancy was the hardest part. Since I’ve been home I have thought about these thoughts shared with me and have left me thinking more and more about it all…

• Sure the pregnancy was hard, but I don’t think it was the hardest part. I had worries and fears but my baby was safe within me. I actually enjoyed most of my pregnancy after I got past the emotional shock of him having spina bifida.
• Many have told me that next to pregnancy the NICU was the hardest part. I can’t quite say I agree with this either. I almost feel more reassured because I know he’s getting the best care in the NICU.
• The hardest part has been coming home and leaving my baby boy behind.
• Nights are the hardest for me. It’s when I reflect the most and miss him the most.
• Yes, it’s at night that things are silent. I find myself trying to rest and just over a week ago when I felt that same silence it was in anticipation of my son arriving. Now that time is spent missing him…being here. But also missing him …it only reminds me how much I miss him being safe within me. I miss the kicks, the hiccups, the times I’d beg for him to settle down and rest so that I might rest for more than an hour at a time.

MY RECOVERY
If you haven’t heard, my recovery has been challenging. It’s an eerie reminder of October 2009 after miscarrying and going through so much medically that month. Yes, one might think I’d begin to feel better since being discharged from the hospital this past Saturday. Unfortunately I’ve taken a turn for the worse. With each day more has been bothersome. My feet have been swollen every day and seems to be worse each day. I continue to feel pain, even under some very strong pain medication. I’ve been told of some discomfort that might continue after I left the hospital so I’ve hesitated overreacting and calling my doctor. Yesterday it was suggested by several people, even medical personnel that I should call my doctor. I thought I’d try to wait until Wednesday when I’m use to my doctor being in the office. And then I woke up this morning. As I tried to get up out of bed I had the most excruciating pain that felt like someone was stabbing me with a knife in my stomach. All I could do was scream and cry. I began to fear if I’d even be able to get out of bed, but thankfully I did. As soon as I got on my feet I called the doctor’s office and hoped one of my doctor’s that I’ve seen regularly would be in. Thankfully they were. I informed them what I had felt and they scheduled an appointment for my doctor to see me earlier this afternoon.

Before we ever arrived at my appointment we ran into my doctor’s nurse at lunch. She already knew I was on my way to see them this afternoon and I again had flashback of October 2009. I’m sure many patients may call with concerns after surgery, but those that know me know that I’m the one who tries to deal with discomfort as best I can and I only call the doctor when I truly feel something is wrong. I think bumping into her and the fact that I’m in more pain a week after surgery was a reminder for not just me, but for them of all I went through back in October 2009. She agreed they didn’t want to take any chances after all I’ve been through.

By the time I got to my appointment the effects of my medicine began to kick in. Even with medicine it hurt so much to walk, sit, and stand. It would leave me feeling as though someone was either stabbing me or I’d feel pretty intense burning, stinging, and a tearing feeling.  At times just sitting there I would continue to feel pain, cramping, and discomfort. I was miserable, even after pain medicine. It was like the only thing the pain medicine really did for me was made me more tired and dizzy. By the time I saw the nurse I felt so fatigued and dizzy and I just wanted to sleep. My doctor examined me and he said my incision from the c-section looked great, however, all around the incision I felt so much pain still. I did leave the hospital with the fear of an external infection around my incision, but now there’s a fear that I may have an infection going on within, possibly an infection of my uterus from surgery. Yes, I again had flashbacks of the surgeries and infection worries in October 2009 after miscarrying. That month of my life was so worrisome and something I fear. To be safe my doctor prescribed me an antibiotic that should help rid my body of any internal infection. Now we pray it works. I fear knowing what would happen if it doesn’t work…so we pray again. It was suggested I take it easy, and all the others I encounter at the NICU see me in pain and discomfort request the same. They all continue to remind me that they’re taking good care of my baby boy and they prefer I rest at night so that I can recover from surgery.

IN JUST ONE WEEK…
In just one short week of his life Chance has touched so many. I have been told it and I sense it. I can sense there are many who are out there silently reading, and perhaps may have been for quite some time. This morning someone from Winnie Palmer’s media relations stopped by when we were visiting Chance. Prior to leaving for the hospital I learned he had begun following me in twitter and I began to wonder what provoked it. I often have businesses and people follow me in twitter and always wonder “why” they care to follow me. So when I finally got the chance to meet him this morning I remembered his name thanks to social media. He informed me that he had been following my blog for several months and that there was a golf tournament coming up for fundraising and to spread the word about Winnie & Arnold Palmer hospitals. Apparently Channel 6 news will be doing an hour long special featuring some families who have been impacted by both hospitals. After following all we’ve been through with Chance’s pregnancy and now since his birth he said he felt our story would be an ideal one to be featured if we cared to share it. Of course here I am blogging…publicly…I see no reason to try to hide now. Perhaps Chance can touch a few more lives and perhaps in the process we can create more awareness about spina bifida. I’m still so shocked at how clueless so many are about what we knew our son would be challenged with so soon in life.

I suppose it’s time to get more rest…hopefully this update has helped you all feel a bit more in tune with what we’ve been faced with. Now we pray that Chance & I get better soon.