Making Our Spirits Bright

7 months ago we were told that our little babe would likely not have any movement or feeling in his feet and legs.

Untitled from Katie on Vimeo.

We believe that THE babe born 2000 years ago is still performing Christmas miracles!

Note:  I apologize for the over-exposure here of our little guy's body.  I hesitated to post it because he kicked off his washcloth, but his happy kicks seemed too good not to share!

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.

Check Up

We are just home from Gabe's 2 month check up with our pediatrician.  Apparently, when we put our little guy on the growth charts it just so happens that he isn't so little after all.  Way to go there in the high 90th percentile for weight Mr. Cheeks!  Gabe's head measurements continue to climb, which is a concern.  He will see his neurosurgeon again tomorrow for a head ultrasound and follow up.  Until we have pictures to compare his growth to, and a consult with the expert, we will sit tight.

This appointment also brought Gabe's first immunizations.  If you're a mom, you know the drill.  Hold down their arms, look in their eyes, and hold your breath while the sympathy tears flow. Except this time was different.  Held my breath, waited for the first pokes, then a big smile.  He felt them.  He knew they poked him and he didn't like it.  And that's a good thing. Now we are cozy together on the couch recovering while the other babes rest and a storm rolls in.

Big Guy

We watch his reactions, 

 study his quirks,

ask questions we never knew we would have,

keep a close eye on the growth charts,

appreciate each movement,

 & celebrate each milestone.

{Gabe Evan 8 Weeks}

We would say we are lucky, but luck has nothing to do with anything.

We are blessed.

We are thankful.

A Letter From Gabe

Hi Friends!

Just checking in.

What? You said you wanted an update?
My momma is behind on this blog?

I know. I keep telling her how upsetting that is.

I don't really understand what the deal is.

She has plenty of time.

Anne Hope feeds me,

Gavin entertains me,

and Gibson snuggles me.

We are all just having a ball!

Anyhoo, I better get back to my most important work.

 

 Sending you a giant hug,

Gabe

Falling 4 You

For 40 weeks

we dreamed of having our fourth little lovey home & healed.

Now he's here for real.

Gabe Evan {4 Weeks}

Spina Bifida Worldwide Day of Prayer

Did you know?

"October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world.


To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are beautiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.

October 20 is Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side." { For more info }

This weekend as we waited for our hospital discharge instructions, I spent time reading through the extensive notes in our file documenting this pregnancy, delivery, and time in the NICU.  I was struck by something specific I read in a note from the high risk specialist to my OB.  Tucked in the middle of a letter full of medical jargon was the following, "Patient was counseled regarding termination and refuses based on religious beliefs.  She attends XYZ church" {of the crazy people who hope in something brighter than doctor diagnosis.} {On that note: What the heck does the name of my church have to do with my decision?  But, that's a whole 'nother soapbox...}

Thinking back I was reminded that even my own doctor threw out the T-word in his first three sentences when explaining our original ultrasound. In fact, I was conditioned to dread my prenatal appointments as they gave repeat opportunity for defending my rationale for carrying my sweet baby to term.  The doctors' tone, during my time in each office, was often that of a dreary funeral procession instead of the joyful ballad of new life.

We are so thankful for our joy in hope, patience in affliction, and trust in a perfect plan for our baby boy.  We recognize that he was knit together just the way he was intended to be.

This little man, "who will likely have breathing problems, endure multiple surgeries, spend extended time in the hospital, need a feeding tube, have cognitive impairments, never walk, have kidney problems, have no control of his bladder and bowels, worst case...worst case...worst case..." is our own little miracle. We will never venture to imagine our lives without Gabe.

He has already brought our family closer together. Introduced us to an amazing new community of love and support. Encouraged us to lean on our faith.  Solidified our relationships with some amazing friends.  Brought hundreds together in prayer.

Because of him, and Him, we will join in prayer again today.

For unborn babies.

For kids with spina bifida.

For all children.

Amsterdam International

The following is re-posted, with permission, from Uncommon Sense. Written by Dana Nieder.  She can be contacted at uncommonfeedback@gmail.com

To fully get this post, please read (or re-read) Welcome to Holland before starting.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.

It skips everything.

While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.

The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this:

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this {gosh darn} unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

Welcome Home Baby Gabe

We may still be on the roller coaster for the extended ride,
but at least the terrifying, upside down, loop de loop part is past us.
Now is the time to raise our hands and shout with glee.

From the message we sent to our extended family last night,

"It's been a busy & EXCITING day - these parents are ready for bed, yet we wanted to be the ones to share our great news.  Gabe was discharged from the hospital today.  For the first time our family is together in our home.  We are so thrilled.

   

This afternoon we strolled out into the fall sunshine with our babe in tow.  {Those of you who have followed Gabe's story from the start might like to venture a guess at which song greeted us as we started up the car to head home.} 

For tonight we are so very glad to be able to hear our babe when he cries in the wee hours, to feed him without a 10 minute walk through the hospital, and to hold him without plastic gloves! 

Thank you so much for all of your continued encouragement and prayers"

A Few of My Favorite Things

Gabe Evan {3 weeks}

Joy Will Come

Before Gabe was born I was told by other moms that the diagnosis and pregnancy part of spina bifida would be the hardest. "It is all so much easier once your baby is born." They explained that after I saw him,  held him, it would not seem as difficult to deal with his likely long term health struggles.

Their advice holds pieces of truth. In that moment when I saw Gabe for the first time I could not help but be joyful for the miracle of birth, his special life, and all that is to come.

Yet, now there is a part of me fighting against each poke and prod instead of kicking peacefully around his warm and cozy spot inside. We are separated by plastic gloves, crunchy gowns, stairs, elevators, scrub in policies, gated doors, and incubators instead of living in one body - like we were just 20 days ago. Anywhere we were our family was together. Gabe was familiar with our voices, noises, and routines. Seemingly the familar sounds and schedules of his siblings have been replaced by his nurses' three hour care times, IV pumps, and monitor beeps.

When we are finally home little Gabe's spina bifida may pale in comparison to having our dear miracle with us, but for now none of this is easier - it is much more difficult than we anticipated.

"Preplanning doesn't make the bumps in the road any less jarring." From the book Chronic Kids, Constant Hope by Hoekstra and Bradford.

Covered

in cozy

in prayers

in love

Two Unexpected Frustrations

Our sweet Gabe has had quite a go of it this week.  After his surgery Gabe required some "big gun" antibiotics to fight off possible infection.  The meds have given him some obnoxious tummy trouble and one miserable rash from his incision, down his bum, and to his knees.  Ick! 

~The silver lining: Gabe is aware - can feel - the sting of the rash.

The antibiotics have proven to be necessary as the microbiologists and infectious disease specialist have determined that our babe also has MRSA - which is a hospital infection that is resistant to most treatment.  At this point Gabe is in complete isolation.  This is a really difficult transition. 

~The silver lining: Gabe finally scored his own private room.

What a way to celebrate your two week birthday little mister! 

Gabe Evan {2 weeks}

Knocked Down, But Not Out

This week has held its share of ups and downs for our family and our little boy wonder.

Gabe's back showed signs of either an infection or a necrosis at the site of his incision. When the Dr. saw him early in the week he ordered antibiotics to help ward off the infection if that was indeed what was the leaking at the incision was fat that had died and was melting away (by the way I'd love to know how to catch some fat necrosis of my own;).

This week also brought elevated bilirubin levels forcing Gabe to stay in his incubator under phototherapy lights all day. He did okay with this, although having his eyes covered and being on his belly made him more vocal than the nurses were used to him being.

Yesterday was a good day as he was taken off the phototherapy routine and his IV was taken out. We held him on our lap and had good visits with his eyes open.

However during the night his incision opened significantly. It has been determined that the tissue in his back died and therefore the stitches had nothing to hold together anymore. Gabe was taken back into surgery to have his back re-repaired. This is quite a setback as it means his healing is now starting over at day #1.

We knew before this all began that we would have ups and downs and that we would be held through them all, but we are still feeling a bit defeated as each day passes and it becomes more difficult to not have our family of 6 together. Yet, another successful surgery is now behind us and it's time to get back up again...

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!

New Associations

In the past I've met with friends where I was defined as teacher, Hope College alumni, mom of a preschooler, Christian woman, city newcomer, and more. These pieces are, and will continue to be, part of me. 

Last night I met with an amazing new group of women, giving me a new association - spina bifida moms.

I will admit that joining these ladies took a lot of courage. I had, and continue to have, so many questions about what life is going to look life for us and for Gabe. Hearing much of what these moms are dealing with, as well as their perspective on day to day life, was inspirational. Yet, it was frightening.

Today my head is bursting with new information, new questions, new to dos, and new hope for our new journey.