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,


  1. Stef & Dave...this is such GOOD news! It's fixable...and the right medical team is in your back yard. Praise God! Yes, it hurts so much to know Tucker will have to go thru the surgery, but as you said, many parents would be so thankful if they could get an answer like this. We CONTINUE our prayers...for Tucker, for both of you, for Dekker, for the grandparents, and for the medical team. Please, please keep us posted. We are Tucker's Great-Grandparents and our hearts hurt for you. But we know God's got His plan and His plans are good, whatever they might be. Let us know if there's any other way we can be of help. Love you bunches and bunches, LaoLao & PaoPao

  2. Hi Stef, I'm so glad to hear so many of your prayers have been answered. You all have been so on my heart and mind these last few days. I pray you will continue to have the strength you need to get thru this. I know it's not much, but I would love to bring a meal over for your family sometime either when Tucker is in the hospital recovering or after he's home and you just need a little breather. Let me know what and when would work and I'll make it happen. Best wishes and continued prayers,
    Sarah Jo (Frazier) Tegtmeier

  3. Hi Stef I am so sorry to hear about your news, but so grateful that you have so many "thanks" on your list. You are such a faithful family and I am humbled to hear about your journey so far. Thanks so much for sharing. Best wishes and heartfelt prayers to you all.
    Angie Haase

  4. Stef, I am praying for all of you. Isn't it wonderful how God uses everything in our lives to draw us to him, but hardships do that more than any blessing?! God is so amazing.
    Sandy Kafka

  5. I am praying for you Stef.
    Kelly Wilson

  6. I am praying for you, your family and the medical team.
    Brenda Wood

  7. I just want you to know that even though it's not on your list, that I'm so THANKFUL that God made YOU and DAVE Tucker's parents. Because this is part of Tucker's journey and now part of your journey and I can't think of better or more loving parents to have a sweet baby who is going through this, go through it with YOU as his parents is a huge blessing. Love you all and as always, praying and thinking of all of you constantly. This is all going to work out to glorify our God who loves Tucker more than even YOU, even though that's hard to imagine. HIs plan is perfect and this will work out for His Glory.