Patient Interview

How are you feeling tonight Gabe?

Good

Why are you in the hospital?
They're making me itchy

Why are you here mom?

I'm taking care of you Gabe.

Well, I have Jenny (current nurse)

Who else is taking care of you?

Grandma

How is Grandma taking care of you today?

With slushies, and jelly beans, and my blankie.

What did you do today? 

I got stuck in a bed.

What food do you like at the hospital?

I like mashed potatoes.

Anything else?

SYRUP!

um, and Pink Icecream!  I love it.

Is there anything fun to look at here?

No

What do you watch?

Easter bunny (Hop)

Do you have any friends in your bed with you?

Where'd my baby go?  I want to color with my baby.  I want to watch my baby.  I want to fix my baby.  I want to play my baby. I have Mr. Woof too and Bandit and his house.

What do you want to do tomorrow?

I wanna play with you

When should we go home?

I don't want to go home.  I want to stay here in the hospital.  Because, see.

Hmmm, Gabe!  We will see ...

Isolated

Last time I checked in here our family was home together recovery from surgery and thankful for it!  However, Gabe's little body wasn't as ready to be at home as his doctor originally thought it was. An infection in his incision sent him to the ER and landed him back in the hospital for awhile to really rest and heal.   Knowing what a fighter he is, I settled in with him ready to appreciate the 1-on-1 snuggle time again.  With two days of antibiotics under his belt he seemed to be perking up.  A visit from Gibson even got him out of bed and encouraged him to successfully try out legs a bit.  

 

{best buddy snuggles, good for the soul}

It came as a frightful surprise when he woke up in the middle of night #2 with a significant cerebral spinal fluid leak.  Any of you who have ever experienced a post epidural spinal headache will sympathize with our brave little guy's pain after 8 hours with a very active leak.  Our neurosurgeon's PA scheduled Gabe for a procedure to re-sew his back.  Stressful story short, by the time he woke from the procedure's anesthesia his back was already leaking again.  Our surgeon scheduled a Friday evening emergency surgery to re-open the many layers in his back to find the leak in his dura and repair it.  They found the leak, inserted a lumbar drain, and sent Gabe to the PICU intubated for the night to wait for a PICC line procedure.  

{friday night in the o.r. waiting room}

We have been in the PICU for several days now.  Gabe's incision seems to be healing much better than before.  He patiently endures hour after hour flat on his back while his spinal drain and neurological function are carefully monitored.  We are thankful for the big antibiotics heading through his central line to help fight the big infections that seem to have made their way into his spinal fluid during his original surgery and the other nasty infection that ate its' way through his skin to create the fluid leak.  Gabe's lab work continues to show improvements as well.

Today's encouragement included toddler scribbles in a coloring book, silliness with the nurses, sparkle in his eyes, a normal pediatric diet, and an increased desire to wiggle out of position to be more involved with what is going on around him.  

{paging dr.doggie}

Intensive care and isolation wear on us a bit, but we are reminded that God purposefully lead Hispeople into a place of isolation to develop their confidence in Him as their God. (Deuteronomy 8:2-3)

A friend of Kevin's put some of our thoughts into words, "I know some have been giving God a ration of sh*&! about this "small child suffering thing." (God) seems to be taking it well, something about Big picture, Resurrection, unfathomable life everlasting... 

Holy week in mind, we know God understands more suffering than all the little ones on this unit know.  He can handle our questions and frustrations.  He "gets" isolation. He knows the Big picture.

P.S: Sunday is coming!

Renucci Hospitality House

While Gabe was hospitalized in September and October '10 our family was blessed to be able to stay close to him in the Renucci Hospitality House. Although it wasn't easy, and it wasn't home, the staff and volunteers there did everything they could to help us to feel comfortable and cared for.  Several church and community groups would bring in meals for the guests of the house at least once each week.  During our stay Kevin and I thought often about what we might do someday to give back to this philanthropic effort, which we hope to continue to do in the years to come. 

If you are interested in a unique way to give to others who are dealing with a sick or premature baby (and live in or near Grand Rapids, MI) perhaps you would like to consider donating items from the list below directly to the Renucci House.  This list has been prepared by those working directly with the families.

Urgent Needs:

Supermarket gift cards (Meijer, Family Fare, Wal-Mart)

Cereal

Liquid laundry soap (Tide, Arm & Hammer or Dreft)

Fruit juices (orange, apple, grape, etc.)

Canned Kool-Aid, punch or lemonade mixes

Fresh fruit (oranges, apples, grapes, etc.)

Cascade Automatic Dishwasher Detergent

Various Items:

Combs and brushes

Shampoo (sample size)

Magazine subscriptions

$5.00 taxi vouchers

Restaurant gift certificates (restaurants within walking distance are ideal)

Supermarket gift cards

Foil, plastic wrap and baggies

Pens/pencils/small note pads

Non-stick frying pans

Toothbrushes

Food Pantry Items:

Snack bars/granola bars/cookies

Baked goods “for immediate use”

Chips, crackers

If you have questions about items listed on the Wish List or other ways to help support the Renucci Hospitality House, please feel free to contact Kirk Bart at (616) 391-1787.

What THE What?

I think we are trapped! Mr. Gabe is much more himself. His lungs are clear today and his oxygen has been discontinued. He's playing happily between naps and eating well (I thought!) when he wakes. He is suffering from a nasty diaper rash, but that is typical for him when he is on antibiotics and wearing disposable diapers for an extended period of time. We were quite certain he'd be cleared for take off as soon as we saw the Dr. today.

The doctor stopped in briefly this AM and was encouraging about Gabe's progress and rather casually suggested he'd like to see him eat 2-3 more times before he left. Here we are four hours later and he just popped back in to check on Gabe's feedings. It would not be normal for him at home to eat 2-3 more times in that short period! Plus, he's a honkin' 21 lb. four month old. He doesn't need to eat that often. Anyway, he has decided that his feedings are not "impressive" enough and he needs to stay until he is eating more. In addition he wants him back on IV fluids.  The bummer of that is they had already taken out his IV lock and now they are putting in a new one.  Here we go again...

What the WHAT???

2.17

{still}

2.16

Not The Plan for Tonight

When he woke up yesterday our sweet babe seemed healthy and happy.
Today he started out with a nasty nose. 
Tonight he will be sleeping in the hospital. 

Unfortunately, it appears that he has RSV (which to an older child would be no thang).  For a young baby it presents itself with very labored breathing requiring oxygen until the gunk passes.  They have also discovered an infected ear and what appears to be viral pneumonia. Poor buddy!

While it was not the kind of quiet I was hoping for this evening, it is very quiet.  So, I'm going to make the best of it by enjoying some one-on-one snuggle time with my baby boy.

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"

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.

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...

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

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!