The "other side" of craniosynostosis surgery looks like this:

I belong to a support group of parents whose children have craniosynostosis.  Most of the parents post with glee, "We are on the other side!" after their child has survived surgery to fix cranio.  I understand the joy and relief of knowing that your child has made it through a major surgery, but I guess I wasn't fully prepared for what "the other side" truly means.  To me the other side meant Oliver would be free from his birth defect, have a normal, round head, and I would only have to think about craniosynostosis once a year at his check ups.  I have realized over the past four months that cranio is treatable, but not curable.  Oliver's skull is like the Earth's crust: constantly changing.  Ridges develop and then blend in while small bumps appear and recede.  One day his skull will look round and another day I will be worried about elongation.  I constantly analyze his head.  I keep thinking about the day my doctor finally mentioned Oliver could have craniosynostosis last November.  Oliver, Pearl and I walked to the park, and I called Glenn and my mom crying.  I watched Oliver playing with other children and noticed for the first time how unusual he looked.  In one way I think I was lucky.  For four years I looked at Oliver and saw nothing but perfection.  Had he been diagnosed at birth, I may have never known how that feels.

What does one do while she is waiting around to see if her son needs another major surgery?  Get involved!  Craniosynostosis has become my new favorite past time, a hobby even.  Ask me anything about cranio:  types of cranio, surgical techniques, risks or outcomes.  I think I could answer more than your average pediatrician at this point.  And instead of becoming victims of this birth defect, we are making every effort to make Oliver feel like he is a cranio warrior.  We are heading to San Diego in October to walk with Oliver and Shamu in support of kids with craniosynostosis.  Oliver keeps saying, "Aren't we so lucky that I have craniosynostosis because now we get to go to SeaWorld and I get to hold a sign?!"

Shamu and You Family Walk

It hasn't all been sunshine and roses with Oliver accepting his head.  His incision got infected and we had to shave his head.  People are now able to see his bumps and ridges and scar more easily and ask questions (which I welcome).  Oliver, on the other hand, is sick of talking about his surgery.  He doesn't even want to throw lightning bolts from his scar anymore.  He wanted to know why we didn't ask Dr. Fearon to make his incision wavy so he could spray water at people instead.  I made up a story about choppy water and we are cool again.   

Because Oliver is small and has an different head shape, we worry about bullying when he gets older.  Glenn and I were both small kids and dealt with occasional bullying.  Oliver has been interested in martial arts so we signed him up for a Brazilian Jiu Jitsu class.  The great thing about BJJ is that size does not matter.  A smaller opponent can take down a larger based on skill alone.  Oliver loved his first class!  

We found out that Oliver can fall gracefully:

And he knows how to avoid a pile-up.  Oliver is the joyful child in white near the end of the line.

So, that's where we stand with craniosynostosis.  I'll be back to post about farm life again soon!  Meanwhile, Oliver will probably be hiding under his favorite hat, and Pearl with either be eating or sleeping or doing both at the same time.  

No matter how long the winter, spring is sure to follow.

It has been a dark winter here on the farm, but with the burgeoning sprouts of the daffodils, the light has crept back in.  Our journey started three months ago with Oliver’s diagnosis of craniosynostosis and so began the “winter of gloom.”  Appointments with specialists, CT scans, research, insurance battles and travel planning consumed all of our time.  We celebrated Christmas with as much joy as we could muster for Oliver and Pearl.  All of our thoughts were focused on one date: February 16, 2011. 

The day before and morning of surgery were the most difficult.  In the name of informed consent, I was told to sign a sheet describing all of the horrible things Oliver could face during his surgery and recovery.  The hospital had to make me aware that Oliver could become paralyzed, have a hemorrhage (then catch HIV from a blood transfusion), or die during his surgery.  Then, during our appointment with Oliver’s surgeon, we were informed there was a 1 in 500 to 1000 chance of dying during a cranial vault remodeling procedure.  Dr. Fearon assured us he had not yet lost a child during surgery.  The night before surgery, I began doing the math.  If Dr. Fearon has done this surgery on 2000 kids, he is way overdue for a death.  Then I spent an hour thinking about how we could get out of the surgery.  I have since read this kind of sick thinking is normal at three in the morning before surgery of one’s child. 

The morning of surgery, I kept giving him one last kiss, one last touch and wanting to hear his sweet voice one last time.  I was not sure if we would ever see our Oliver again.  In order to let the nurses take Oliver away, I had to turn off my natural fight response.  Go ahead, take my child, and cut open his skull.  It is not an easy thing to do.  I thought I would be sobbing, or wailing or something, but instead, I turned off.  At one point during the operation, Glenn and I went down to the cafeteria because Glenn thought he was hungry.  We walked the cafeteria for 15 minutes before Glenn realized he was just empty. 

After surgery, I could feel my heart in my head as Glenn and I walked down the hall to visit Oliver in his PICU bed.  I felt a small rush of relief when I saw he was alive, but wanted to make sure he was actually going to wake up before I let my guard down.  Finally, Oliver opened his eyes and whimpered, “I just want to be held.”  At that moment, the joy started creeping back into my life.  Finally, I had some control over the situation; I could be his mommy.  Never have I been happier changing bloody sheets or trying to catch vomit in a basin.  

Because Oliver was so brave and has such a great attitude, I will always remember his time in the hospital as a happy time.   

When we arrived home, we discovered spring was sneaking up on us.  We finally spent some time with our goats and Oliver and I enjoyed feeling Leche’s pregnant belly.  Glenn also recalled that he had ordered heritage chicks for his new chicken-breeding venture.  Glenn and I had a lot to do to prepare for all of babies that would be arriving.

Last Wednesday a small, loudly-cheeping box arrived at the post office.   Oliver wants to create little houses for the chicks (I did indulge his four-year-old fantasies for about thirty seconds) and Pearl wants to use them as teethers.  We are enjoying the chicks with close supervision. 

The next day, Leche’s screams led us out to the front pasture. She pushed for 45 minutes and gave birth to a handsome boy, Patrick (in honor of St. Patrick’s Day).  Because she is a first-time mom, it took her a couple of days to warm up to her baby.  Now the baby is nursing and cuddling happily with his mom (and, yes, of course I’m including the birth shots!). 

We can see hooves!

                                                   The head is born.

Leche was done pushing once the head and half the body were born.  Finally, I helped during a contraction to free the baby.  

Leche is nursing her baby for the first time.  Good job Leche!

Life is officially back to normal.  This spring we are a little more grateful for our kids and our good health, we are a little closer as a family, and have the benefit of knowing just how wonderful and supportive our family and friends are in a time of need.  We consider ourselves to be very lucky. 

Oliver Update

This blog has been neglected recently due to my new obsession: craniosynostosis. I will be so happy when this seven-syllable word takes backstage to our normal lives. For those of you who want to keep updated on Oliver, we have started a CaringBridge page. Here is the link:

Oliver's Page

Surgery is scheduled for February 16 in Dallas, Texas. We are flying to Dallas for surgery because one of the best craniofacial teams in the United States is located there.

Oliver doesn't yet know he will be having surgery. We have been hiding our worries and tears (just mine; Glenn is going to get ulcers if he doesn't cry soon) and spelling out any suspicious words. We are going to tell him three days before surgery, so he has enough time to process the event. Glenn had surgery at the age of four as well and he keeps telling Oliver about his good hospital memories (such as his dad reading to him).

Here is Oliver on New Year's Eve, being silly as usual. Pearl is smiling at her funny brother.

Nature Therapy

I looked up the seven stages of grief because I am sure I have experienced all of them over the past week. Sure enough, it was clear that I went through disbelief, denial and bargaining right in the doctor's office when Oliver's pediatrician said, "It looks like Oliver has craniosynostosis, we should order a CT scan." What?! His head is like that because he was a preemie! I don't think we need to do anything. I'm sure he will grow out of it, he just needs more time.

Next, after Oliver had a nervous breakdown when he saw the CT scanner, dodging technicians as he ran the halls of San Luis Diagnostics, I felt depression and anger set in.

Then, because I had the whole weekend to do research, I oscillated between guilt, depression and anger. How did I not notice this when Oli was a baby!? Why did his pediatrician think he was fine, too? What will we do if our baby needs surgery?

One support group and two specialists later, we have some preliminary answers. Oliver does most likely have craniosynostosis. He does not need a CT scan (I'm so happy he ran from that room) and according to the top craniofacial doctor in Dallas, he probably will need treatment to relieve the pressure on his brain (separation and removal of a fused suture in his skull: a craniectomy).

So, how have we been coping? The only way I know how: nature therapy! We have spent the week splashing in big puddles, going on hikes, and boating and fishing for leaves in the "river" near the road.

Oliver, the paleontologist, acting like a T-Rex.

Sleep Hiking


Pearl worked up an appetite from all of her strenuous sleep hiking.

Oliver's pirate ship trailing my party boat.

This leaf fish tasted delicious with a little lemon and olive oil.

Finally, yesterday, as Pearl and I watched the boys bake a pumpkin pie,
I felt some acceptance start to creep in. Stage seven arrived with a wave of peace and relief. I have so much to be thankful for this year. Pearl was born easily, on time and has been the picture of good health. And I'm thankful for Oliver for putting a smile on the face of nearly every person he meets. Each challenge he has presented to our lives has made us better parents and more thoughtful people.

Either way this thing goes, I know Oliver will be fine. He's got the personality to pull of a slightly different head shape and gumption to make it through a difficult surgery. After all, how many four-year-olds can dress a baby AND bring sexy back? See for yourself!