Friday, April 20, 2012

Quick FIve

This is going to be a truly "Quick" five.  Happy Friday, friends!

1.  My day started off wonderfully well when I got on facebook and learned that my friends Tim and Mindy got approved to bring their baby boy, Silas, home.  It is just amazing and they have been on a difficult, but faith filled journey that has been so close to my heart-- the type that you just can't get out of your mind and think about and pray for all the time.  Read about their adoption here.

2.  Another answered prayer-- God has provided a tremendous resource for our family.  Through a friend of a friend of a friend (and thanks to this blog) we have met a local mom whose son had the EXACT same surgery as Tucker, with the same surgical groups, at the same hospital, with the same insurance.  Her son has the exact same condition as Tucker and she has already provided us with a wealth of helpful information and even some pictures of their journey.  I can't wait to meet her and we plan to do lunch or supper sometime soon.  Thank you to everyone who has helped us search.  We have met several other "answered prayers" through all of you, and we are loving creating a community of people who know about his procedure, have had it before, know about it medically, etc.  Katy, my new friend, suggested I check out CranioCareBears.  If you want to know more about this condition or care to check it out you can here.

3.  Love seeing these two boys interact.  My heart truly does overflow with gladness, they are so stinkin awesome.  Tucker will not be contained much longer-- he is really rolling around and it is so fun. Dekker likes to have him sit in the Bumbo and be on his level. 

4.  We are still reeling from the great birthday extravaganza around here.  I was pretty laid back and pretty simple about the party last weekend at the park, purposefully so.  But I wanted Dekker to have a wonderful party and to have a special time just for him.  I am so worried that he is going to feel slighted through all this with Tucker.  Which he won't.  But I'm paying special care to make sure that he gets moments to feel special and that big things, like his birthday for goodness sake, don't get overlooked!  Here he is, a few days after the party, still loving his hat at the breakfast table!  More pictures to come.

5.  Next week is Week of Ministry at Nebraska Christian College.  I am on the "Omaha Team" and we are working with Rebuilding Together Omaha to make some repairs to a home in north Omaha.  I am thrilled for the chance to work with the homeowner, this quality organization, my "mentor" from Rebuilding Together, my co-worker Leslie, and the students from NCC.  We have a great team of 30 students and have big plans for the week.  It will be a week of full time working motherhood, and I am grateful for flexible grandparents and daycare friends and a supportive husband to help bridge the gap from our "usual".

Have a great weekend, everybody!

On the journey,

Thursday, April 12, 2012

"God Is Working Upstream"

This week has been precious.  I was off for Spring Break last week-- or I worked from home anyway.  In the meantime, several of my colleagues here at Nebraska Christian got the prayer request for Tucker.  Yesterday my office was buzzing with people stopping in to offer encouragement, to let me know they were praying for us, and even to stop and pray right then and there.  I appreciated this so much, and one of the prayers really stuck out to me-- when my colleague prayed that God would be working "upstream" on our behalf.  In other words, we are praying that God is taking care of details and has "gone ahead" of us.  It will be exciting to see how that plays out.

Today we heard from Dr. Treves, our neurosurgeon's, secretary.  She told me that the PA and Dr discussed our May 8th appointment with the Cranial Facial Surgeon and that they believe it is absolutely fine and that there is no need to rush that appointment and/or rush the surgery.  They are very comfortable with this timetable.  After the appointment on May 8th we will schedule the surgery, and possibly have a few appointments in-between.

Today we give thanks that God is working "upstream" in our life:
* We are thankful that we are not in a position to RUSH into anything, and that the doctors are comfortable that his present condition will not worsen while we wait, or make surgery more complicated.
* We are thankful that I will be able to make it through the semester without taking an absence.
* We are thankful that I have the summer OFF to help Tucker recover, without the stress of trying to balance my responsibilities at work.  (God was already working upstream and knew this would be the case when I took this job last year!)
* We are thankful that I will be able to preach at our church, Stonebridge, on Mother's Day.  This is the second time I have done this, I am so excited!
 * We continue to be thankful for Dave's job-- for his understanding co-workers and work from home capabilities.
* We are thankful for your prayers!  We feel confident, less anxious and grateful in ways we would otherwise not be able to.  We aren't thrilled to wait, but we know that sometimes God does His best work "while we wait" and we have faith that His timing will be perfect.  I am thankful for a period of "wait" to practice giving my anxiety over to Him, trusting Him more, and not "stewing".

Finally, I just have to post this picture.  His onesie is especially true today!  I stopped in front of a mirror about half an hour ago and I decided that I now officially look like I only got 3 hours of sleep last night (despite my best attempts with coffee, make-up, and Diet Coke)-- which is true thanks to this sweet, cuddly thing who is already getting his third tooth and was up all. night. long :)

The onesie says "My Mommy Is Exhausted!"

On the journey,

Monday, April 9, 2012

No News Is Good News

As the saying goes, "No News Is Good News."  At least that is what we are hoping.  We are in the middle of playing phone tag with the Cranial Facial Surgeon and the Neurosurgeon.  Apparently, the Cranial Facial guy can't get us in until early May.  Which is fine by us, as long as that is okay with the Neurosurgeon (whose staff made the appointment...).  There is a bit of a time stamp on this surgery, because after 6 months (May 16th for Tucker) the skull and its bones start to become more and more dense and therefore more difficult to reshape.  After 9 months the surgery is much more complex.

So this is our prayer request today-- that the surgeons would communicate and that Tuckers best interest would be in mind.  If it's okay to wait, we will wait.  If not, we would like an opening with Dr. Miller sooner so we can move forward.  By the way, your prayers are fantastic.  Every time I get totally overwhelmed, and afraid, and the anxiety comes over me with the weight of an elephant-- I think about how many people are praying for Tucker and I am almost instantly comforted.  It is weird but wonderful to actually feel prayers.  Thank you seems too weak for such an occasion... but sincerely, thank you.

In other news, we had a great weekend.  We went to Aurora where my folks were way too good to us.  They showered us with love and encouragement, yummy food, took the "night duty" with the baby, spoiled the boys, and we even took a nap on Saturday.  It was great!  Dekker's birthday was Saturday, and it was so fun because he "gets it."  We told him it was his birthday and then he said we ought to sing "Happy Birthday To You..." and eat cake and open presents.  So we did all three.  He loved having that song sang to him so much that I think we sang it four times... it was requested in-between "Twinkle Twinkle" and "Jesus Loves Me" at nap and at bedtime.  He is such a special, wonderful boy.  My heart almost explodes just thinking about him and I am reminded that Jesus, my heavenly father, looks at me and loves me (and you and Dekker and Tucker and _________) even more.  I can't imagine that, but that is the kind of love Jesus has for us.

Nana and Grandpa got Dekker a bike.  He is not nearly
old enough for this (ahem!) but he is sure good at it already!

Sunday was a great Easter, complete with ironing and ties and church and an Easter Egg Hunt and Easter baskets.  Seriously, present overload for the three year old by the end of the weekend.  But, we have had a blast playing with all the new stuff today.  I'm so thankful for the message of Easter every single day-- that our Redeemer Lives, has conquered the grave, and that we have hope for ETERNITY because of his sacrifice.

That's right, I had Dekker in a tie and a polo.  Thanks to my
sweet friend Jenny for helping me shop at the last minute--
nothing was too "matchy matchy" but it all coordinated.

Baby's First Easter Egg Hunt.

I am only adding this picture so that you all know I did indeed throw caution
to the wind and wear pink pants on Easter.  They were stylish and appropriate
and somehow this is the only picture I have where you can see them! 
And as the other saying goes... "I should be grading papers!"

On the journey,

Wednesday, April 4, 2012

This Just In

Welllllll............. actually I got the call around 5:45 tonight.  And when I answered and it was the neurosurgeon himself, on a personal cell phone, I already knew the answer.  Tucker's Sagittal Suture is completely closed.  The only way to fix this malformation is surgery, which the doctor thought would be a total Cranial Vault Reconstruction.  We have so many questions, which simply could not be answered tonight, but many questions were also answered with that call.  Our next step is an appointment with the pediatric Cranial Facial Surgeon, Dr. Miller.  The neurosurgery office will make this appointment for us, send our scans and information over, and talk to him personally before our appointment.  I assume we will meet with him in the next 14 days, but I am honestly pulling that out of thin air.  (I have no clue.)  We will get the call regarding when that appointment is by the end of business Friday.

Tonight, Dave and I are giving THANKS.  We are praising God that:
* The doctors continue to believe this is a "stand alone" case, and not associated with an underlying syndrome.
* That our prayer was answered that the scans were clear and the diagnoses was definitive.
* That the other two "sutures" (think: joints) in Tucker's skull are open.  (His soft spots are not.)  This is great news, as the growing brain has somewhere to go and is not pushing on a rock hard skull.  This greatly (greatly, greatly) lowers the risk of inter-cranial pressure, seizure, hearing loss, etc.
* We give THANKS that our pediatrician caught this at our "well baby" appointment.  It is quite rare, but she was on top of it.  The doctor today said between 3-6 months is optimal time for surgery as the baby is old enough to handle anesthesia, has a lowered risk of blood loss, and yet the skull bones are still malleable. We are so glad we caught this in this window, and we will likely have surgery pretty close to that six month mark.
* And I say again, that we have Children's Hospital literally down the street, who actually does this procedure... regularly.  The pediatric neurosurgeon/pediatric cranial facial surgeon combo is apparently fairly rare.
* We are so thankful for health insurance.
* That we are surrounded by our incredible family, friends, church and small group.  We can't say enough how glad we are that we don't walk this road alone!
* For Dr. Treves.  He is our neurosurgeon and he has been nothing but confident, calm and otherwise wonderful.  I thanked him tonight for calling me after-hours, personally, and he said that he is a dad and he knows what it's like to wait on information about your kids.  Dave and I both feel a real peace that he is the right guy for Tucker.  
* For the power of prayer.  It is a humbling experience, but we feel your prayers.  We have peace and joy.  (We might be in denial and shock still, but we'll cross that bridge later :)
* That Tucker appears to be otherwise very healthy.  It is hard to be too upset about this when we know that there are Mom's and Dad's out there who got much worse news than us today.  At this time, we believe Tucker's condition is 100% correctable with a prognosis of being a healthy, "normal" kid.  We know that many Mom's and Dad's would give anything to have one surgery, even one major surgery, "correct" their child.

In addition to your continued prayers, I do have one request.  We would like to meet another family who has an infant who has been treated for Craniosynostosis at Omaha's Children's Hospital with this surgical team.  It would be really helpful to talk with another Mom and Dad, to learn more about the procedure, recovery, what type of help we should line up, what to expect post-op, etc.  I know that the doctors can help us with this... a lot... but I think another family who has recently gone through it would be a big help, too.  If you know of someone, would you send them our way?  My email is:

Finally, here are a few adorable pictures from the last few days around our house:

This is Dekker reading a book to Tucker, who is in the bouncy seat.

Enjoying this gorgeous weather!

 On the journey,

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,