One

One Week Ago

One Precious Gift

One Day at a Time

One Miracle After Another

{Gabe Evan - 1 week}

From Gabe

Hi everyone!
Thanks for all of your prayers. I gotta tell you, healing is a big job, but I'm working hard at it.

My owie.

(Momma says the Drs. are worried that I may have an infection in my incision, so I just got a new IV and more antibiotics. I have to stay on my tummy most of the day...again...But, I've figured out that if I act crazy hungry they will take me out to hold me)

My tanning glasses.

(a.k.a. protection from phototherapy - I guess these silly doctors didn't like that I was glowing orange)

My lounging table.

 (I will look forward to the day I don't have to hang out here, but for now everyone does their best to keep me comfy)

Hugs,

Gabe

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

Perhaps Neurosurgeons Are People Too?

After waiting much longer than we expected, Kevin and I were finally able to meet with the pediatric neurosurgeon last week. We came prepared with many questions, yet a bit intimidated to ask someone so smart and skilled.

We had heard plenty of warnings about what to expect when talking to this scientific specialist: worst case scenarios, confusing vocabulary, goofy doctor-isms, and inflated self esteem. We were so pleasantly surprised by how the visit actually progressed.

Our doctor was incredibly honest with us about what to expect. However, he explained so many things to us in language that we were finally able to understand and statistics that we were able to hold on to. He has professional opinions on whether or not to proceed with a shunt surgery right away, as well as whether to use programable or non-programmable shunts {a confusing sentence if you're not a SB insider...sorry}. Yet, he is willing to listen to our concerns about each of these issues and involve us in the decision making process. 

There is peace in knowing what to expect from this specialist in the weeks {and years} to come. At this point it is high on our prayer list that this neurosurgeon will be assigned to us after our baby's birth. At this point it is the plan, however his {the Drs.} family is dealing with a personal medical uncertainty of their own which may change his schedule. For those of you who have willingly joined us in prayer for the days and weeks to come, we ask that you will add this concern to your list. Thanks!