Wait for it...

Just days from now Gabe will be 2!  We can hardly believe it.

I remember meeting with his neurosurgeon before he was born.  At the time he explained to us our baby would likely need a shunt to help manage his hydrocephalus.  When Gabe was born they decided to hold off on the shunt when doing his initial back closure.  There were many tense days in the hospital where they monitored his head circumference.  Measurements were taken at each feeding to see if there was a significant risk and reason to proceed with the shunt surgery.  After a month in the hospital we were sent home with a tape measure and our adorable little “mega mind” for more monitoring. 

When he saw him for the first time, our thorough pediatrician wrote a pop up note on our electronic file that he would personally like to measure his head each time Gabe was in the office for any reason.  A shunt seemed inevitable. 

We returned to HDV often for ultrasound, CT, and MRI scans of Gabe’s brain to carefully measure the percentage of fluid versus brain growth.  We held our breath.  We prayed for miracles.  With each visit to neuro our Dr. would weigh the pros and cons.  He seemed to wrestle with himself, and the options, just below his breath, in the octave where we could sense the hesitation in his thought process even if we didn’t hear it in his statements.

 “let’s wait just 3 more weeks to decide”

“repeat”

“hmmm…3 more weeks”

“well, I guess I want to revisit this in another month”

 “let’s check him again in 2 months”

“the next appointment will be critical.  If there is ventricle growth in his CT scan we will proceed with a shunt.” {note: This is when we took him to Boston for a 2^nd opinion and a discussion about proceeding with ETV/CPC instead}

 “if he makes it safely to 1 year he will likely be okay without a shunt” 

"see you in 3 months"

“well, if he doesn’t need intervention by the time he is 2 the chance he will ever need a shunt is about 0%!”

"schedule a 6 month check up"

We recognize the amazing medical advances in shunts allowing doctors to save the lives of children with Spina Bifida.  Along the way we somewhat accepted the idea that Gabe might eventually need intervention. But, this week we are relieved, thankful, and thrilled to finally say...

We have a SHUNT FREE 2 year old!  

A Piece of Our Love Story

While working on a project for my grad class I experimented with the Windows tool called PhotoStory3.  I enjoyed putting an article I recently wrote for Anat's site into video form to share with you here.  The sound and timing aren't perfect, but we think Gabe is! ;)

Kids Beyond Limits

Anat Baniel is the founder behind the method of therapy we have gone out on a limb on to commit to with Gabe.  It is outside the norms and while it has been researched extensively, we are among the first to use it for a child with Spina Bifida.  We have been so fortunate to find a passionate and kind practitioner close to home.

On March 27th Anat's newest book, Kid's Beyond Limits will be released.  We are looking forward to reading it in whole and sharing it with others that may benefit from learning more about the method.  In anticipation of the book's launch Anat is sharing pieces of her philosophy on the Huffington Post.  I especially appreciated this article,  

Children With Special Needs: A Revolutionary Approach Gives New Hope.

Here's a couple of my favorite quotes if you aren't into reading the whole article.

"...if the arm of an infant is not doing the typical  because of an injury to the nerves  the brain will not be able to get information it requires to learn to control that arm well, if at all." 

(in our case consider the statement to include an injury to the nerves in the legs, feet, and toes).

"...Will moving her arm in that passive way, that is, by physically taking it in our hands and exercising it, result in her brain getting the information it requires to move that arm well on her own? Will trying to get her to do what she cannot do provide her brain with the missing information?"

 (ex. being propped in sitting before he is ready,  standing with extensive bracing, walking with any type of ambulatory device) 

"As counter intuitive as it may appear, the answer in most cases is that it won't. It is way too limited! The healthy infant does thousands upon thousands of small, highly varied movements that are not the final skill... It is this flood of seemingly irrelevant information that the child with special challenges also needs."

"{ABM} provides tools... to wake up the child's brain and flood it with information it has to have for that child to be able to successfully move from the impossible to the possible. This is not some kind of magic or esoteric system but is founded on scientific principles that have been demonstrated over and over again by leading researchers the world over. Science has shown how the brain possesses a remarkable ability to create alternative solutions to physical and mental disabilities when given the information to work with. Through the spontaneous process of differentiation (discerning increasingly finer differences), the brain creates billions upon billions of new neural connections; these are the very connections that every child's brain needs to figure out how to stand, walk, talk, think, and do everything he or she will ever learn to do"

Now, THAT is this kind of thinking that hooked me when I attended Anat's conference a year ago this March. Since then we have seen Gabe work beyond the limits of his diagnosis.  We are certain ABM has been part of our miracle.

A Happier Holiday

Sometimes it isn't until the big sigh of relief that I realize I have been holding my breath.

We live in this place of expecting the best, but preparing for the worst.  This time the "worst" was an impending brain surgery.  At our last neuro appointment we were given the impression that we had met up with decision time on whether or not Gabe needed a shunt.  Based on his steady ventricle growth we were "teetering on the fence."  Since Thanksgiving it has been on our minds that it might have to happen between our appointment on the 16th and the Dr.'s holiday vacation schedule.

Kevin traveled to the appointments with me yesterday where we got the sweet, sweet news that Gabe was safe to grow - shunt free - for another month! 

Another answer to our prayers. 

Breathing more easily for sure. 

In fact I think I might finally consider some gift wrapping and baking, just in time for a celebration.

Gaby Babe

Our week has gone far better than we ever imagined.  For the last 16 weeks we have anticipated our babe's arrival with excitement, love, and trepidation.  As Gabe's birth week has unfolded we have consistently been blessed by his progress and the news we receive.  All better than we expected, yet I realize - just as we prayed for.

We were told that Gabe would need to be flat on his belly for about 2 weeks while his incision healed properly.  This meant that all feedings would be by bottle, in the incubator, with a cricked neck. We are now able to hold him to eat on his tummy or his side.



Side lie also means that I can see his whole sweet face when his daddy holds him:) Amazing progress! 

We were also interested to hear from the surgeon about where Gabe's defect seemed to be located on his spinal column.  There are no specific indicators of what his leg function will be based on the location, but there is some thought that the lower it is the better.  Based on our ultrasounds they suspected Gabe's lesion to be mid-lumbar.  His neurosurgeon has determined it to be a sacral defect.  Lower than we expected.  Another huge praise!

Gabe is moving his leg and continues to feel sensation in his feet - especially during those 6 hour lab work ups.  He has had plenty of wet and dirty diapers (that they have us changing).  All good things!

Typically, after the surgery to repair the back the fluid levels in a baby's brain will increase because it no longer has a place from the spinal cord to drain.  In the day after surgery Gabe's head measured a bit bigger and the nurses speculated that he would indeed need a shunt placed before he went home.  However, in the two days since then his head has measured the same as it did at birth.  Seriously, more amazing stuff!

At this point our little guy is totally IV free, eating on a schedule, and resting comfortably on his belly between feedings. We are encouraged by all of this.  Right now Kevin and I are transitioning to a nearby hospitality house to stay while Gabe continues his NICU journey.  

Thank you for your continued prayers. 

They ARE working. 

Miracles abound.

"All glory to God, who is able, through his mighty power at work within {Gabe}, to accomplish infinitely more than we might ask or think." Ephesians 3:20

Surgery Update

Kevin and I were just sitting bedside with our baby boy, who is super sleepy as he slowly works the anethesia out of his system, amazed at the peace we felt in the midst of great uncertainty today. It is obvious that your love, thoughts, and prayers are with us and pulling us all through.

We got the call at 7:30 AM that Gabe's surgery would be between 8-8:30. After spending a bit of time next to his bed we headed to pre-op to meet with the neurosurgeon (who was not the one we originally met with and were expecting to see) and anesthesiologist (who happened to know our extended family and was the Dr. for a surgery Gavin had in '08). On the way down, in his incubator, our sweet babe opened his trusting little eyes for the first time and watched us as we rolled down the hall next to him.

Just before the surgeon took our little love away I said, "We're trusting you here."  He smiled at me (for the first time) and said,"You need to look a bit higher than me."  Well, yes we do and we will.

The surgery to tuck his exposed neural cord back into his body lasted about 2 1/2 hours and the surgeon declared in a success. In his post op call he explained to us that Gabe had minimal blood loss and they were able to repair his back without plastic surgery and/or skin grafts. (For those of you who are not familiar with Spina Bifida, this surgery is mostly cosmetic and intended to protect his body from infection at the site of the lesion. The surgery does not fix the damage done by the inutero defect.) They were also pleased that they were able to use a "straight, mid line" incision. We are learning that this is a positive thing. Our strong fighter proved himself again as he was able to return to the NICU without the ventilator (which they originally warned he might need throughout the day today)!

We will have more questions for the specialist tomorrow, such as: where specifically was the defect located on the spinal column and how will the fluid on Gabe's brain be monitored and treated in days to come (it is possible he will still need a brain shunt placed after recovering from this initial surgery).

We are praising God that the surgery went smoothly, that the NICU is very encouraged by the small size of Gabe's defect, and that he is still exhibiting some sensation and movement in both of his legs.

We are praying specifically for a few requests tonight:
~Yesterday Gabe was showing signs of both bowel and bladder function with wet and dirty diapers. Since surgery today he has yet to have any function - this could be related to surgery, however there is also a possibility that further damage occurred during surgery limiting these functions and making is necessary to use a catheter to protect his kidneys.
~Even though we are not able to physically display our affection by holding him yet, we are praying that Gabe would feel the love and comfort from all of us and that he will be able to appropriately bond.

Thank you so very much for your continued love and support!

"Be joyful in hope, patient in affliction, and faithful in prayer..." Romans 12:12

He Is Beautiful

Introducing...

Gabe Evan

7 lbs. 13 oz.

20 inches long

We are completely in love with this beautiful baby boy and amazed at the way God has already displayed his power in knitting together our precious son.   Many miracles to share in time, but tonight we ask for prayers in directing our neurosurgeon's hands and decisions tomorrow morning.

"Praying that you have the heart to fight

Cuz you are more than what is hurting you tonight

You're beautiful, You're beautiful

You are made for so much more than all of this

You're beautiful, You're beautiful

You are treasured, you are sacred, you are His

You're beautiful"

~Mercy Me