Monday, May 28, 2012

Surgery Day

  Surgery day was the day I had been dreading for a month.  I spent the day and night before spending as much time as possible with Connor - caressing and kissing his head and trying to memorize every nuance of it.  I planned and packed and got myself and the family as prepared as I could for surgery and then a possible week with me in the hospital.

Connor had to sense the stress.  Before surgery he could eat for the last time at 2am.  I, the eternal procrastinator, got finished prepping and in bed after 11pm.  I tossed and turned a bit but finally dozed off to have Connor wake up at 1am to eat.  After getting back in bed I debated if I should keep my alarm set to feed him again in 45 minutes to make sure he got as much as he could or just let him sleep.  I decided on the latter only to have Connor back awake at ~2:15.  And he was crankyyy!  Because I couldn't just nurse him back to sleep - and didn't want him to spend the night before surgery crying in his bed, I rocked and soothed and consoled, all to no avail.  He had to have felt my stress and was stressed out himself.  All I kept thinking as he cried in my ear was that I was already exhausted, and had a huge day ahead of us, and could not imagine how I would make it through it all successfully if I truly got no sleep.

Glenn and I took turns trying to get him settled and finally got him back to sleep and back in bed just after 4am.   Our alarm went off around 4:30am so that we could get ready and be at the hospital by 6.  Glenn must not have been feeling it because he promptly turned the alarm off.  I rolled over and opened my eyes thinking that it seemed a bit lighter out than I expected and found that it was 5:34 - about 20 minutes later than we had planned on leaving.   Thankfully I was ready to go and with no traffic on 64, Glenn made it to UVA in record time.  Though the drive seemed like an eternity.  Leaving the house in such a rush only added to my anxiety.  I couldn't help but think that I forgot something and was so worried that the way things were going was some sort of sign of how the rest of the day was going to go.    

It was such an emotional ride.  As we exited the interstate I lost it.  I just did not want to do this.  Part of me wanted them to tell us we couldn't have surgery that day because we were too late.  It was all so overwhelming.  They took us right up the the pre-op staging area where they took the last of the info we needed and each team - anesthesiology, plastic surgery & neurosurgery - came in to go over everything and answer any final questions.  I didn't want Connor to feel how upset I was, but I was so aware that this was the last time I would see my boy this way.  That the blonde hair I loved to stroke was getting ready to be shaved off.  That these were the last moments that I would see him in his original state.  And there was the part I didn't even acknowledge - that this was a huge surgery, and that there was always the risk that this would be the last time I saw him at all.  I had to hand him over and trust that these strangers really were going to take care of him like he was their own.  Even writing about it now makes me cry.  I was able to pull it together and get through all the questions and then I had to hand him over.  I tried to be as happy as I could be - making silly faces and saying a million I love yous - but seeing him carried away felt like my heart being ripped from my chest.  A feeling I hope I don't have to experience again.  

The waiting was agonizing.  They had prepared me that they would put him to sleep first and then do all the prep including his IV's and central line, and that it would take some time before surgery would actually start.  They called the waiting room around 9am to let me know that they had begun the actual surgery.  It was like reopening a wound - and my worry flared up again.  Thankfully we had great friends and family to keep us company.  And there was a board showing all the surgeries by number and operating room, color coded to show where they were - pre-op, in surgery, in recovery, etc.  It at least gave me something to focus on.  But the time seemed to drag on.  

As a nursing mom, I also had to find somewhere to pump.  So they let me go to the pediatric intensive care unit (PICU) to the room he would be in, to pump.  While I was in there, Dr. Jane, the neurosurgeon - who has to be one of the nicest doctors I've worked with for either of my boys - called my cell phone to update me and let me know that his part of the surgery (the removal) had gone well and that the plastic surgeons were working their magic.  He has such a calming demeanor, and reassured me that Connor was doing great, and I could feel myself relax a little.  He also told me he thought they'd be done around noon - almost 3 hours sooner than he had previously predicted.  That was the boost I needed.   

We anxiously watched the board and a little over an hour later saw his color change and got the call that he was out of surgery and we could go see him in the PICU.   It took everything I had not to run right up there.  I just wanted to get my hands on my boy.  When we got to see him he was starting to swell and already looked different - his head was noticeably rounder and he had blood still on his face and what looked like blood tears coming from his eyes.  He had monitors on his chest, an IV in his foot and hand and a central line in his neck.  In that moment Glenn and I switched roles.  He had been so calm and reassuring every time I cried this last month, but then lost it as soon as he saw him.  Really everyone did.   He was so pitiful looking but for me he was okay and I could kiss him and rub him and all my fears went away.  We had finally made it to the other side.

Wednesday, May 23, 2012

This time....

This time last year.  This time next week.  

It's a game I've played with myself for a long time.  I am a planner and a reminiscer, so I'm always thinking in those terms.  I count down to big events - this time next month I'll be married.  This time next week I'll be a mom.  And I like to think back on milestones.  I still hold Cadence on every birthday, if I can at his birth time, and think about where I was and  what I was doing this time last year, 4 years ago, etc..  Aside from looking forward and counting down the days until I'm no longer pregnant (because at some point I always went from counting down the days until the baby was here to just not wanting to be pregnant anymore!) I haven't really looked forward in time with my kids.  I've already learned how quickly the time goes by and I am conscious of not wanting to wish anything away.

But I have been counting down until tomorrow.  I'm not sure I've counted down an event I have dreaded more.  From the moment we had a surgery date, I have thought of that date every single day.  I've been wanting it to hurry up and get here, while at the same time just hoping it never comes.  I know he'll be okay, and we have no choice really about having to have this surgery, so I know in the end all will be well, but it's been like a cloud that just hangs over me.  Being on this side of it - looking at what we have ahead of us - has just plain sucked.  But I know once we're on the other side of it, I'll be okay.  I just have to get to the other side.  (As a side note - this is something I've been telling friends since we had our date - "can't wait to be on the other side".  As it turns out - a lot of cranio parents refer to it in that way.  Who knew I would finally be hip and on a trend, not 10 years behind!)

So this time tomorrow, my sweet, drooly, open-mouthed smiling baby boy will be in surgery.  I can hardly believe it.  We had our pre-op appointment on Monday and got the low down on pretty much everything.  And I was reminded of how all the little details of it are what really bothers me.  Today is the last day I will nuzzle his baby hair, because tomorrow they shave it all off.  Starting tomorrow, his head will forever bear the scar of what he's had to go through.  Tomorrow I will have to somehow find the strength to hand over my sweetheart to what are essentially strangers.  This is probably the moment I have feared the most.  But I know I will get through it.  And this time next week we will be home.  And my smiley boy will be back, though with a rounder head, and this will just be something I look back on a month, a year, 10 years from now.

Monday, May 21, 2012


This past weekend was Relay for Life in Augusta County.  Participating in Relay is something that I had thought about here and there throughout the years, but had never gotten the nudge or real desire to go out of my way to do it. Then a few months ago I had someone come through our neighborhood asking for donations.  It was one of the moments in my life that I can clearly say God intervened.   I won't go into the whole story, but suffice it to say she was the exact right person who showed up at the exact right moment and said the exact right things.  When I closed the door after she left I knew that God had sent her to our door and I knew that we had to participate in Relay.

I was so excited about participating that within minutes of her leaving I had recruited family members to participate and was planning our event.  But a few weeks later Connor would get his preliminary diagnosis and my focus shifted.  Instead of focusing my excitement on fundraising and all the fun things we could do at the event, I was fully engulfed in the cranio world and preparing for surgery.

I knew as it got closer that this year was going to be our test year.  My goal was to get Glenn there so that he could be around other survivors and celebrate the fact that he did in fact survive and to feel it all out.  I couldn't split my focus so we were just going to go and see what it was all about.  

So Saturday was our Relay.  A big shout out to my sister in law, who thankfully took charge and made plans when I didn't.  Thanks to her we had a campsite (who knew we even needed one) and tents and she even made a basket to raffle off to raise more money!  

The first thing that happens at Relay (at least ours did - I'm clearly not an expert) was the survivor lap.  I can't tell you what it felt like to watch my hubby circle the track in his survivor shirt with all the other survivors.  I could see it meant a lot to him too.  Cadence found his daddy in the sea of purple and was so excited to cheer for him and finished the lap with him.  There was also a survivors' dinner where we found Sharon, the lady who knocked on our door.  I was so excited to have Glenn meet her.   I knew he would like her and hoped she could be someone he could lean on and talk to about all the things only someone who's fought through cancer can understand.

It was really an awesome evening.  There were definitely a lot of tears shed - the luminary ceremony was SO powerful - and how do you not lose it when they end that with a bagpiper playing Amazing Grace and then a lap in silence.  But it wasn't all doom and gloom - it really was a celebration of life.  And it was so good for my husband.  He and Sharon have exchanged numbers so that they can stay in touch and he's already planning our event next year!  It was such a great way to get in some really great family time in this weekend!  

I can't wait to relay next year!

Monday, May 14, 2012


In hind sight, I probably should have known after planning to be induced, and then being bumped for 2 days, that life with Connor was never going to go as planned.  When that didn't do it for me, having him flip over while I was in labor to end up breech and requiring a C-section should definitely have done it.

I, like I imagine most 2nd time mom's do, had wondered most of my pregnancy how I was possibly going to love another boy as much as I love Cadence.  I had always wanted to be a mom and when Cadence came along, I realized that my desire was far outmatched by my intense love for my boy.  And having to face seizures and tests and hospital stays only intensified that love.  We have spent far more alone time together than we probably would have in a different situation, and having to pay much closer attention to all the nuances of him, I think I have a much deeper connection to him than I may have had otherwise.  I have a love for that boy that I could never describe and feared I would not experience with Connor.  Oh but life is funny sometimes.

On that sunny November day, when we finally were induced, and I heard the cry I'd been waiting for, I learned what so many moms before me had tried to explain - your heart just grows.  Instantly I knew I would die for that little fella and that I absolutely loved him intensely.

But Connor came into a different life than his big brother.  The C-section was certainly not the peaceful birth that Cadence had.  Cadence was placed right on my chest and we cuddled for hours, but I had to wait 5 very long hours before I could really have any quality time with Connor.  And then I was recovering from major surgery.  Connor came home a day before Glenn left for a week long trip with a new job that required frequent, lengthy trips out of town.  Maternity leave with a newborn and an almost 4 year old (mostly by yourself) is nothing like it was with an only child.

So I've spent the last 5 months or so feeling like poor Connor has gotten the shaft.  He's such a happy, good baby, but I've often felt like he's been getting the left-overs, while other parts of life are getting first dibs.  And now he's facing surgery.  It just doesn't seem fair.  But - since I must always find the positive lest I burst - I'm feeling like I'm almost getting a do-over on maternity leave.  Glenn no longer has to travel (thank God!) and though I hate the reason for it, I will get another opportunity to spend some quality time at home with Connor while he recovers.  That little joker and I have some serious snuggle time in our future!!

Wednesday, May 9, 2012

Breech head?

"Oh look at his breech head"

This is something we heard countless times when we were in the hospital after Connor was born..  I never quite got it.  Never quite knew what everyone was talking about.  After all, as far as I knew he was only breech once we tried to get him out of there.  He was head down at all my doctor's appointments and when they started the induction.  It's only when the heat was on that he seemed to decide to flip over and try to stay awhile.  And aside from being a little larger (which he comes by honestly, unfortunately), I didn't really think there was anything that remarkable about his head.

At his 1st real doctor's appointment I asked my pediatrician about it.  She explained that his forehead was a little more prominent and that it was a little elongated in the back, but that that was from being breech - that he was probably breech more than we realized -and that it would round out.  I always had my doubts about that whole theory.  His head shape really didn't bother me, but I always found it hard to imagine that he was breech often enough to change the shape of his head, but would flip and coincidentally be head down for every doctor's appointment.  I should have known not to doubt my mother's intuition - in my opinion the greatest sense God has bestowed on this Earth!  Glenn on the other hand - his head shape bothered him!  He was always worried about it and wondered if he needed a helmet to round his head out.

On April 9th, 2012,  I took Connor for his 4 month appointment and Cadence for his 4 year appointment.  I had a list of questions about Cadence - we had an EEG scheduled, we'd changed Neurologists, I had behavior questions.  The whole appointment was really focused on Cadence and Connor's check-up, other than worrying about the shots and how much he'd grown, was never given a second thought.  So when my pediatrician told me she couldn't feel his soft spot I literally just laughed.  It also dawned on me for the first time that I could not remember the last time I'd noticed his soft spot - or really if I'd EVER noticed it.  So we were being referred to a neurosurgeon.  

I remember the day we got our appointment reminders from UVA - the same day we got our neurology reminder for Cadence and the neurosurgery reminder for Connor.  It was depressing and surreal all in one.  Not exactly what I pictured when I imagined being a mom.  

So on April 23rd, 2012, we took Connor to UVA.  I had done some research by now and was not surprised, though not at all happy, when he was diagnosed, pretty much at first glance, with craniosynostosis.  As my pediatrician suspected, his sagittal suture had closed forcing his head to grow front to back and not allowing it to grow side to side.  It results in a head that looks like this:

It was a whirlwind afternoon.  When the neurosurgeon came in he went right into explaining the surgery that was needed to correct the condition and the ultimate risks involved (you should never have to discuss things that could result in the death of your baby!).  We went from the neurosurgeon's office to the plastic surgeon's office and left with a surgery date - May 24th, 2012.  Everyone was so fantastic - and we are SO lucky that Glenn's niece actually works for the plastic surgeon, so I feel like we've totally got someone on the inside.  But I lost count of the number of times I cried that day.  Or of the times I've cried since.  

This being a parent thing is no joke!!  But I am oh so aware that this could be so much worse.  I'm so glad this was caught so soon, will be corrected so quickly, and that hopefully there will be nothing long term that we'll have to worry about.  So many parent's face things so much more catastrophic than this.  But I'm good if we're done with doctors and hospitals for a while after this!

Tuesday, May 1, 2012

I have a blog!!

I have a blog?!? Doesn't everyone?

It's actually something that I've been toying with in my head for a while. I've been a consumer of blogs - mostly other mommy blogs - for a few years. Despite having been told that Glenn and I should be followed by reality TV cameras, I never thought I had much to share with the world wide web. Then Cadence came along, and his seizures started. After learning so much, and sharing so much, with other moms who do have blogs (and kids facing challenges), I thought maybe I can contribute? But nothing ever came of it.

But now I've decided I'm ready to share. I'd like to have a way to update family and friends on the family, and as we approach Connor's surgery, his progress. But I also think it will be therapeutic for me. I have made no secret of my love of therapy. For me, it is a necessity to sit down and get stuff out. I have had to handle a lot, but I would have been committed a long time ago had I not sought out and found a great counselor where I can unload. But I can't stop by every day, and we've got a big month ahead of us, so for now you all (or you mom - perhaps the only person who will really be interested :) are my therapy.