Monday, April 2, 2012

(Crane -- ee--oh--sin--oh---stow--sis)

A few weeks ago I had never, and I mean honestly never, heard the term Craniosynostosis.  After putting off making the appointment, I finally got around to making Tucker's 4 month well baby check.  (Note to self: GO TO those appointments-- vaccines or no vaccines.)  We were so nonchalant about it that we scheduled it over lunch and took Dekker.  At the end of the appointment, with both boys tired and hungry and climbing the walls, our pediatrician told us that she thinks Tucker looks wonderful, developmentally appropriate, BUT that he has an unusual skull formation.  She started using big words like Craniosynostosis, Dr. Puccoini, Children's Hospital Craniofacial Clinic, and used the term Pediatric Neurosurgery.  Kid you not I wanted to do the ugly cry, kick her, and run out.  She suggested we get some X-Rays.  Dave and I went to the car in total shock.  Soon, we started using the coping skills we are accustomed to-- which for Dave means joking (calling our doctor "Panic Pants") and for me means awful anxiety and immediately jumping right to the worse case scenario.  Let me tell you that when things get tense in our marriage, times get interesting.  That appointment was on Friday, and we went for X-Rays the following Monday morning.

Wednesday morning I was driving to the Children's Museum (finallllllllllllly got there and it was awesome) when the doctor called me on her personal cell phone.  She asked me to pull the car over so we could talk.  My heart sank.  She told me that the preliminary report came back that Tucker likely did have Craniosynostosis and that she would like us to see a specialist (aka Neurosurgeon) as soon as they could get us in.  I called Dave, then my mom.  Oddly enough, I handled that news with a strange peace, but it very much upset Dave.  Since then, God has continued to give one of us strength when the other is frail, thank goodness.  And, if you know us, I am typically the one on the frail end!  Several times I have felt the crushing weight of fear and anxiety.  I continue to ask for prayers that I would not be ruled (not now, not ever) by anxiety and fear, and that the Holy Spirit would instead fill me with joy everlasting and a peace that transcends my understanding.

By Thursday we had an appointment for today (Monday).  I tried not to make a script in my head that they saw the XRays and "rushed" us in because it was "very, very bad."  I tried not to spend the weekend soaking up every smile with the Devil in my ear telling me to "enjoy it while you can."  I am telling you what, this may be about Tucker's skull, but God is doing a work on my anxiety in the process.  We spent considerable time on the internet researching the condition, talked to a few medical professional friends, called in an army of prayer warriors, went to the Home Show and zoo because life just goes on, sent Dekker to spend Sunday night with Aunt Becky, and went to the ritzy building this morning.  We both woke up in a pool of sweat this morning with the covers on the ground from literally tossing and turning.

I will tell you that our appointment today was favorable.  But to understand why I will tell you a little about Craniosynostosis.  Craniosynostosis is the premature closing of an infants "soft spots".  What we have learned is that babies have more than just soft spots, but they have actual soft "sutures" that run the length and width of the head.  This helps the baby's head to be flexible enough to fit through the birth canal, among other things.  This is why a baby can have a "cone shaped" head.  The head needs to be flexible and malleable, and gradually over the first 18months-2years of life all those soft spots and sutures close up and the head is the shape it will be.  Sometimes babies get flat spots because of the way they position their head, etc.  Then, they wear a helmet.  As the flexible skull continues to grow, the helmet helps make sure it grows into the correct shape.  Craniosynostosis is different.  With this condition, the head is misshapen because the brain is pushing on the skull, but there isn't enough room for proper growth.  It occurs sporadically in about 1 in every 2,000 births.

Here is a picture of the top of an infants skull.  You can see each of the "soft sutures" and the two "soft spots" that you have probably heard about.  In Tucker's case, the large soft spot is too small, and we assume that his Sagittal Suture is closing prematurely, or is already totally closed.  Tucker has a prominent forehead and an elongated head.  His head looks more like a football instead of a basketball.
The very scary part of this diagnosis, and what has kept me on my knees this week, is that this condition can present itself, in about 20% of the cases, as a symptom of a much bigger syndrome.  We have been praying that Tucker's case would be "non-syndrome".  Some very scary, life altering and life threatening syndromes can present in this way.  To increase my already high anxiety is that Tucker was born with a sacral dimple on his lower spine.  I was concerned that the combination of the skull and spine was not looking good for "non-syndrome", even though the dimple had checked out on ultrasound as totally normal. 

Our doctor today stated that he feels Tucker does not have an underlying syndrome.  This was a welcomed relief!!  He also said that his other sutures were, from what he could tell on the XRays, open.  That, too, is great news!!  He ordered a CT Scan to get a better picture of the Sagittal Suture and to rule out any other possible problems that could cause a malformation of the skull.  Assuming everything else looks totally normal (please Lord), we will have three possible outcomes: suture is totally closed-- surgery required; suture is totally open and he just has a misshapen head-- helmet required; suture is partially closed-- we will talk with the Craniofacial Team and go from there.  The surgery ranges from endoscopic surgery to a complete Cranial Vault Reconstruction.  Both types of surgery have pros and cons and both are preformed by a neurosurgeon and a plastic surgeon at the same time.  It helps me to remember that this is actually a bone problem, not a brain problem and that a neurosurgeon is involved because of the very close proximity to the brain.  We have learned that we are fortunate to have at least three surgeons (that we know of) here in Omaha and connected with Children's Hospital for this procedure should we need it. At the end of our appointment today I asked the surgeon if he had a hunch, off the record, and he said that he suspects Tucker has a closing of the Sagittal Suture, he's just not sure if it's completely closed or partially closed.

Because we were in the Hilton of Neurosurgery (is there any other type?), they happened to have a CT machine down one floor.  So we could get it done immediately and we should get results in the next three days or earlier.  I feel some relief that if he does have something life threatening going on, like inter-cranial pressure, fluid on the brain, etc that the doctors will be notified immediately and we can get Tucker the help he needs.  David is reminding me that there are no signs of this in Tucker, and that this is my anxiety getting the best of me!  Anyway, it will be good to "rule it out."  Logistically, it was great, too.  

Dave and Tucker just before the Scan.  You can see a bit of the misshape of his head
in this picture, particularly toward the forehead.
May I never see one of my children in this state ever again.
 Did I mention how nice the office was?  Dave said that he felt like his wallet was lighter just walking in (there's that humor as coping again).  He even took this picture, which even I found very funny.  This is the desk calendar at the appointment desk and it is sponsored by a collection agency.  Yowzers.

We are asking for an army of prayer warriors and here are our prayer requests, at this moment, off the top of my head:
* We pray for no surprises from the CT Scan, specifically that there is no pressure or fluid on the brain and that no "red flags" are raised for one of the 108 known syndromes associated with this malformation.
* I say again, please pray that this is a stand alone case, associated with no underlying syndrome.
* We pray that the results from the CT scan will be definitive and we will know our next step.  We pray things won't be "up in the air" for long.  We pray for a short wait for those results.
* We pray for strength to receive bad news if that is God's will.
* We pray for wisdom for the doctors and surgeons who are reviewing our case.
* We pray for peace and joy and against anxiety and fear.
* Please pray that Dave and I would turn toward one another and lean into God during our moments of stress and that we would surrender ALL to Him who is incredibly capable and loves us and Tucker more than we can imagine.
* Please pray for Dekker, that this would go on without a major disruption to his life and that he would see Dave and I live out the faith we profess.
* We give THANKS for our friends and family (you!) who are praying along side us.  We feel your prayers, appreciate your texts and calls, and have wondered several times how people ever think they can do life alone?  Humbly, we ask that you do not stop.  We got great news today, but the prospect of surgery is scary. (But God is bigger, thank you Lord!)
* We give THANKS that God gave us Tucker.  We give THANKS for our pediatrician, for the staff at Midwest Neurosurgery, for access to incredible medical services and technology, for access to Children's Hospital, for health insurance and for our work.  

That is all for today, but I will post updates as we get them.  Dekker is still partying it up with his cousins in Lincoln and Tucker is just waking up.  I am totally emotionally exhausted.  I am reminded that God will never give us extra energy to worry.  When I ask God for just a little more energy so that I can sit around and worry I know that he says no every. single. time.  When I ask God to increase my faith and trust Him more I know that he says yes every. single. time.  I could go on and on, and I hope I will soon, but I want to say thank you again to those of you who have been praying for us, sending encouraging texts, notes and voice-mail.  It is humbling, but incredible, to feel your prayers.  I will never say "I'll pray for you" in a casual manner again after this experience.  Prayer is SO powerful.

This isn't a journey that we signed up for, but we walk it with hope.  Thank you for walking with us.

On the journey,


  1. Praying for your sweet boy and for your very precious family. Thankfully, "His strength is perfect........"

    Judy Gillen

  2. Oh my goodness, Stef & Dave...had we known, we'd have been praying as well! You must be totally emotionally exhausted for sure. We know first hand how difficult it is to TRUST, 'cause we went thru so much concern with Diana who had to have a trach-tube put in when she was 45 MINUTES old! She was in Intensive Care 3 months, I couldn't hold her until we got her home, just touch her thru the port-holes of the unit. She weighed 7 lbs. Please, please let us help you with prayer. God is Good and he'll help you get thru this! Love you all bunches and bunches, Lao & Pao

  3. Steph,
    I will add you all to my prayer list. Your honesty and faith and hope beyond this circumstance is so evident and encouraging. I won't spend time sharing a tough situation we went through with our son before he was born but I will take time to say that the POWER of prayer is undeniable! God hears the prayers of the faithful and I promise to be faithful in praying for you guys. Having walked through a tough trial myself with our son, there is nothing like feeling the power of prayer when traveling the journey. I am reminded of a phrase from a song that encouraged me so much when we traveled our rocky road. It states "All of my days, in every season, I have a reason, I have a reason to worship". May the Holy Spirit remind of a new reason every day to worship our worthy Father and Savior. And may your grow deeper in your trust of Him with each passing moment.
    In His Love,

  4. I'll be praying for you and your beautiful baby and family Stef! Praying especially that your burden of anxiety will be lifted with some of the answers you need this week. Love you!

  5. Sincere, heartfelt, and continued prayers are being lifted up for little Tucker, you and your family.

  6. I'm just crying and praying for you all right now. So sorry you are going through this journey with Tucker. Love you so much and just constantly praying praying praying!!!!!!!