Okay, shunt…you’ve got a job to do.

“That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude.” –Elder Joseph B. Wirthlin

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.

meds *ugh*

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.

The first time I saw Chance after surgery

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.

Shunt recovery

Shunt recovery

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.

Getting some love from Daddy

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.

Look Ma...I can breathe on my own again!

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.

Look Ma...I can breathe on my own again!

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.

Look Ma...I can breathe on my own again!

Look Ma...I can breathe on my own again!

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.

all sprawled out

all sprawled 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.

One week old

“In the book of life, the answers aren’t in the back.” ~ Charlie Brown

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.

Chance @ 1 week old

Chance @ 1 week old

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

Chance @ 1 week old

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

Chance @ 1 week old

I admired Jason and Chance today.

03012011-jason2

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.

03012011-jason4

03012011-jason3

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.

Photographing Chance

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.

Chance @ 1 week old

I adore when he purses his lips together.

Chance @ 1 week old

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.

Chance @ 1 week old

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 @ 1 week old

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

Chance @ 1 week old

And smiled…

Chance @ 1 week old

He seemed curious…

Chance @ 1 week old

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

Chance @ 1 week old

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.

a little over a half a day worth of milk for Chance

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.

Hope's weekly goal

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.

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.

PHOTOS FROM CHANCE’S BIRTHDAY
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 him  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.

Chance

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.

Chance

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.

My little fighter

What a long day today has been. We started the day with some great news. The neurosurgeon stopped by and informed us that Chance is doing really well since his surgery yesterday. She said he looks good since the surgery was done to close his back. She was impressed to hear that overnight he chose to let the NICU know that he no longer wanted the ventilator in place that was being used to help him breathe after surgery. It’s common when babies, especially newborns, are in surgery that they forget to do normal things like breathing and eating. Because he rejected his ventilator they monitored him closely and it was pretty obvious that he was strong enough to breathe on his own unassisted. The neurosurgeon was very optimistic that he was going to recover well and said he may possibly be home in less than a week if he continues to make such good progress with his recovery.

Today I got to visit Chance in the NICU. Yesterday I was on total bedrest and wasn’t allowed to get up all day so I was more than anxious to see my baby boy. This morning was my first time up and about after the surgery but as tough as it was to move around at first it was totally worth getting to visit Chance. He was resting comfortably and just like his big brother, he seems to love his pacifier. Jason and I visited for a while, spending most of our time admiring him. You all might enjoy the photos from today in the slide show below.

Chance continues to make great progress. He’s breathing on his own. Eating on his own. He’s even smiling on his own. In the brief times I’ve seen him I’ve caught him smiling four times. And not only is he peeing but as of today he’s pooping on his own. Yes, I never thought I’d get teary eyed over baby pee and poop but hearing that he was able to do both on his own definitely left me emotional knowing that one of the hurdles that those with spina bifida have is the inability to use their bladder/bowels without assistance. Yes, my baby boy is going pee and poop on his own. Jason and I couldn’t be happier to hear that news. Tomorrow Chance will undergo an ultrasound to check the ventricles in his head and determine whether or not hydrocephalus is developing. We’re keeping our fingers crossed that he won’t require a shunt, but only time will tell for sure.

CHANCE’S NAME
I know you all have begged and pleaded throughout the pregnancy to know the names we had chosen. We’ve always held off sharing the names because we really didn’t care to hear how much others might dislike our name choices. There’s a lot of thought that went into choosing Chance Matthew’s name. After going through the miscarriage in October 2009 and all the worries that we might never be able to conceive again we were relieved when we heard everything was okay. I have to admit that month long struggle to get past that miscarriage and all the uncertainties made us very fearful to try to have another child. Despite all the medical concerns and heartache we experienced we elected to take a “chance” and try again as soon as the doctor said we could. Yes, rather than giving up on the third child we came to dream of, we took a chance. And when we learned he had spina bifida we also took a huge “chance” as we had to make the tough decision of whether or not to continue with the pregnancy.

Chance’s middle name, Matthew, we considered initially because of it’s biblical context. Jason’s mother always did this with all of her children. Matthew was not only my favorite from the list that went with Chance but reading the definition makes the name that much more meaningful. Yes, Matthew means “Gift from God”. I instantly thought it was the perfect name at that moment. Hope & Jaylen’s middle name just happened to have the same definition when I recall us selecting their names. Beyond his middle name having so much meaning it is just a bit more special because his middle name happens to be the same as my doctor’s first name. That wasn’t the plan, but once we discovered all the meaning it held we also recognized the significance my doctor had in ensuring our little one made it hear safely. He was there amidst the chaotic moments surrounding the miscarriage. He was the one who performed the medical procedure over a year ago that verified I was okay to conceive again after the very trying medical challenges that accompanied the miscarriage. And he was there every step of the way through this pregnancy as I feared miscarrying again and once we discovered Chance had spina bifida. Yes, every step of the way my doctor helped give me the reassurance I needed to finally have Chance here with us.

I know quite a few of you who know Jason’s family have made remarks about Matthew being Jason’s brother Erik’s middle name. Normally I’m against naming my children after any friend or family. However, after the explanation above I had my mind made up and felt it was the best name if we were to have a boy. I definitely did think a bit more about Erik once we realized how much we admired the name Matthew. I have to admit that of all Jason’s brother’s Erik has had a very special connection to our family. Not that his other brother’s were ever any less important to us, but for many years I have thought of Erik as one of our own children as we helped him so much when he moved to Florida. We’ve went through many ups and downs over the years with him and as we did Erik has definitely grown to hold a special place within our family. He has a special connection with our kids that has brought us all so much happiness. So though the intent of Chance’s middle name was not to be a tribute to Erik, knowing that Chance’s middle name is the same as Erik’s will certainly help remind us of his Uncle Erik who definitely a special part of our family.

MY RECOVERY
I think many of you must be shaking your heads as you have seen me online since the c-section. In fact, I was in recovery only a matter of minutes before I was handed my phone so that I could tweet and update others in facebook. I haven’t quite been connected 24/7 to my iPhone or laptop, but it has been a great way to pass time as I’ve definitely been hit hard physically from the surgery. The recovery is definitely a lot tougher than a normal birth but I’m coping with the discomfort and learning to adjust to the new limitations I have as I try to recuperate. This time around has definitely been much more different but in the last day I’ve been able to get up and move around and it certainly has helped remind me that all the discomfort will gradually fade and before I know it I’ll be back to my old self.

Jason has been going home at night to be with the kids so I find myself spending the nights getting rest, getting on a pumping schedule, and at times up wide awake. Seeing how I can get up finally, I can think of no better way to spend a bit of my time tonight to take a trip to the NICU for the first time on my own to see my baby boy.

Chance Matthew is here!

Chance Matthew was born this morning at 8:18am weighing 6lbs 7oz and 18 inches long. It was confirmed that Chance does have an opening in his back about 3cm’s in size. Chance underwent his surgery this afternoon and is doing well. He is still on a ventilator to assist him in breathing until the anesthesia wears off. We were told he’s expected to be in the NICU for about a week if he doesn’t have any other problems after his surgery. I posted a few photos in flickr for you all to see in the slide show below.

Despite how heart breaking it is to see my baby boy with all the wires connected, we do have a lot of good optimistic news to share in regards to his spina bifida. Chance is moving his feet and legs, both are good signs in regards to his mobility. He also peed quickly in the first few minutes after birth, yes, all over the doctor. He has also peed on his own since, which is a great sign in regards to his bladder/bowel functions which are a common issue with spina bifida.

Thank you again for all the prayers and reassurance. It’s been a tough, uplifting, yet emotionally and physically draining day for me. I hope you all enjoy the brief update, I wish I could go into more detail, but I admit I’m super exhausted and must get some rest.

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