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!

Strength Renewed

When we go to a restaurant I spend way too much time deciding what to order.  I ask everyone else at the table what they think sounds good.  After much internal debate, and a request for the server to come back to me after going around the table, I order.  Seconds after the server walks away I have orderer's remorse.  Super trivial, I know. 

Making decisions isn't my thing.

I do much better with decisions that are completely out of my control.  Learning to roll with it and make the best of it, that's more my thing.

Even more difficult than making decisions for myself is making decisions that will impact my children and their lives forever.  Names? Ahhh!  Where to send them to school?  Ahhh!  

The last five weeks have been some of the most difficult for me.  Not only did Kevin and I have a big decision to make for our sweet Gabe, there wasn't a good option.  So, with two not so good options, we put them to the test.  We weighed the risks, the facts, and the opinions.  We met new doctors and therapists (mostly in search of someone who would validate my fears and agree with my plan to protect our babe from any more surgeries EVER).  We started new routines and medicine plans in hopes of a temporary solution.  With everything on the scales we needed to make a choice between two unfortunate options.  We struggled. More than just asking around the table (although we did a whole lot of that) we begged God for wisdom. Then, when it seemed our answer was as clear as it was going to be we prayed for peace.  

Writing about it here, sharing Gabe's story over the phone, calling in "our GEMS" via email and facebook, telling our neighbors we would be gone...

...I couldn't bring myself to do it.  Not this time.  It seemed a little too much like making my order and I wasn't ready to just be okay with what came out on the plate.

Today as we adjust to a new normal here at home it is time to accept what is and trust this prayerful decision was best for our babe.   

 

{post op, 3.13}

Last week Gabe had a lumbar laminectomy with a spinal cord detethering.  The surgery went smoothly.  While the symptoms he was experiencing will likely not reverse, the best potential outcome is to stop the deterioration of bladder and kidney function, and to provide relief from the pain in Gabe's feet and legs.  The risk of the surgery was loss of movement.  We are five days into recovery and Gabe is strong and courageous, and willing to admit what his momma couldn't "I'm afraid."   We hope for the best, trusting this is part of His plan for Gabe's future.

{post op day one, 3.14}

 

 {post op day two, 3.15}

At this point Gabe's pain is well managed with medicine.  His entertainment is well managed with fun new toys, great balloons, and cheerful siblings. He has found the strength to push up on his arms, move from laying to sitting, and to rock on all fours.  It may be days{maybe months}, but we are praying he finds the strength to weight bear on his legs again. We have always been aware of what a gift his mobility was, how hard he worked to get where he was, and how quickly all  that could change on this SB journey.  

{post op day four, 3.17}

We will praise Him in the recovery, knowing that no matter what our Gabe will soar on wings like eagles (...but, oh boy!, are we hoping he will learn again to bounce and not grow weary).

{crazy bounce 3.12}

Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Isaiah 40:31

In the News

Did you catch this on the news last week? This report gives a peek at the MOMS study we were invited to participate in after we learned of Gabe's diagnosis in utero.

Visit msnbc.com for breaking news, world news, and news about the economy

While the results are positive, we still feel confident about the decisions we made not to participate in this study based on our family situation, the randomization, and the information we were presented with at the time. However, I am anxiously looking forward to following the stories of children who were able to benefit from the in utero study.  I also appreciate the attention that this study has, and will, bring to the issues Gabe will face throughout his life because of Spina Bifida.

If you are a scientifically minded, or maybe a bit geeky like me, you may enjoy reading the abstract.

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...

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