Remembering and Living

This is a hard post for me to write.  Six years ago today, we were placing a piece of our heart in the hands of skilled surgeons to provide a life for him he would not have without their skill.  He would have no life at all without grace and mercy.

In the midst of the torn emotions, lack of sleep and the fear that slept right outside the door of my heart and threatened to swallow me up, He whispered into my spirit, "I'm giving you a story to tell, and I'll give you a way to tell it."

His glory story.  We tell it.  We remember it.  We proclaim it from the roof.  His glory.  All for Jesus.

Every needle stick.

Every blood transfusion.

Every catheter.

Every mile driven.

Every sleepless night.

Every close call.

Everything for His glory.

Today, we are remembering.

Something painful.  Something good.  Isn't it funny how good things and pain often go hand in hand? He said it would be that way.

God chose to let him live.  To allow His condition to be found.  He chose to orchestrate his surgeries with the best in the field.  He chose to let Him see, and hear.  To run and play.

Why us?  Why were we blessed this way and others painfully have to let go.

No words.  I don't know.  He chooses.

His way is perfect.  It doesn't have to seem perfect to me to make it perfect.  It's still perfect.

Our journey, not without suffering, is taking joyous turns and leading us to places of blessing.  It is showing His grace and mercy.  His glory.

To bring us from this....


Then again not quite five years later...


To this....


How do you put that into words?

Thanks.  The only way for my soul to breathe is with thanks.

Thanks for the community that supported us through each second of each season.  You will never know what that's meant or how it's changed who we are.

Thanks for each note written.

Thanks for each meal prepared and delivered.

Thanks for each prayer whispered, cried and sobbed.

Thanks for every hug.

Thanks for every Starbucks.

Thanks for every hand held.

Thanks for every blood donation.

Thanks for every hour studied to shape the doctors and nurses into who they are today.

Thanks for every mile driven to encourage.

Thanks for every person who obeyed the Holy Spirit's prompting and went the extra mile for Cullan.

Thanks for one friend making a phone call to another friend who made another phone call to a very busy physician who made another call to a surgeon friend, who said Yes.

Thanks for every caring medical professional who tenderly cared for my child just as I would.

Thanks for sibling play rooms.

Thanks for thinking of the little ones who aren't having surgery but living it out just as if they were.

Thanks for Child Life Specialists.

Thanks for ouchie dolls.

Thanks for a spouse who says, "it's going to be ok" when he's praying with all his heart that it will.

Thanks for a husband who stays when others would have run scared.

Thanks for a husband who puts his arm around me and nudges me forward when I'm paralyzed with emotion.

Thanks for a husband who sleeps in a recliner for six months holding our child upright to reduce swelling and keep him from whacking his head in his sleep so a weary momma can catch a few hours of sleep herself.

Thanks for every good and perfect gift that comes from above.

Thanks for a Heavenly Father who sees, and cares and holds.  Forever.

Who says, I will never leave you or forsake you.  And He never does.

And yes, thanks for a skull that fused prematurely and bones that didn't grow and a condition unheard of to our parent ears to forge our hearts with Yours and blast our lives into sharing Your story written over these broken and diseased hearts redeemed by your grace and love and mercy.

Who knows where we are in the story?  Or how many more chapters there will be?  You do.  And because of that...

We remember and we live.  For You.

To follow our life, visit Rockin' What Ya Got.com.

Surgery 2, December 13th 2011--the recap

We are now at about the six month post op point after Cullan's second surgery.  I purposely haven't blogged in detail about this last surgery yet.  Some of you may wonder why.  I guess the best I can explain is you just need time to soak it in, process, take the time to bake in the blessings God has heaped on your head, and just live it.  So, that is what we've done these last six months, and now we're ready.  Ready to share the journey.  I kept my logs again of each day.  The progress.  And the pictures.  Here goes.

For those of you just jumping into year five of this wild and crazy ride, a short update is in order. In early 2007, our then baby boy was diagnosed with a rare cranial abnormality called metopic craniosynostosis.  Immediate surgery was necessary to prevent ICP (intercranial pressure) on the brain, blindness, deafness and brain damage.  Surgery was successful and much reconstruction was done to fit Cullan with a skull that would grow with him.  And grow they have over these last five years!

God has been so good to our family.  Many people may question that and do question that sometimes.  How do I know, you ask?  Frankly, they have said so many times over.  Sometimes, people we know, many times, perfect strangers.  The answer to "How could you go through that, I know I couldn't!", is always the same...God CAN.  God CAN do exceeding, abundantly above ALL that we ask or think.  And, He does.  He can give the grace, strength, endurance and soundness of mind to experience the "whatevers" you get hit with in this life.  He can and He does.  Do we understand?  Usually not.  But, He is faithful, and we can't expect to have the ability to experience whatever we may have to walk through, before it's time.  I guess that would kind of be like saying, I want to know what its like to fly to the moon, have a baby, be married to one person for fifty years, etc....before you actually do it.  Some things we just don't get to know before we need to.  And that's ok.  I didn't say any of this was easy, but it is ok.

Back in the fall, we did receive the news that Cullan would indeed need a second surgery.  (You can read where we announced it here.) The openings made to allow the growth in his skull that he needed that typically fuses back on its own, did not fuse back in Cullan's case (this happens about 5% of the time with his particular diagnosis).  Once again, we found ourselves in such small odds.  But, God really isn't concerned too much about percentages, or odds as a matter of fact!

Many people had questions about the repeat surgery.  The medical aspect of the hole in Cullan's skull looks like this.  Basically he had no skull covering an area at the top of his head about the size of a fifty cent piece.  For a child climbing trees, playing soccer, having three rambunctious brothers, and just plain being a natural born daredevil....not such a good thing.  Injury to the brain was a high risk.  Cullan was also having ongoing pain in the areas of his forehead where his body had made a lot of scar tissue from the first reconstruction.  Scar tissue and adhesions in those areas under the skin are common things, and very painful.  Especially if you are bumping them on a somewhat regular basis.

For Cullan, our family and our team of surgeons, a few things had changed.  Blood transfusion procedures had changed.  His doctors wanted two adult units/four pediatric units on hand for his surgery.  His first surgery required all of those to be used and were donated by family with compatible blood.  This time, his doctors would only accept blood from parents.  A lot of issues over the last five years with reactions called for stricter standards.  Unfortunately, neither of us have his exact blood type.  Blood from the bank was placed on hold for his use.

This time, since Cullan was a Big Boy, his doctor was concerned about the emotional side of things concerning shaving his head, and preferred to take a strip of hair as opposed to shaving his head like the first time.  It was left up to his discretion as a decision to be made in the OR.

Another change for this surgery, was the actual procedure itself.  Cullan's doctor preferred to use Cullan's own bone as opposed to any kind of synthetic material to cover the hole in the skull.  The thought behind this is lower risks of infection as well as the body tends to accept something that already belongs to it better than anything foreign.  Options for bone harvesting were ribs and hip bone.  These were both options for the surgeon to choose his preference in the OR once he could see what he was working with and what would best fit the needs of the skull.  As with any bone harvesting, especially in the rib area, there are risks.  We were aware of those risks and had prayed for the best for Cullan, whatever that may be.

One change for our family this time around was, our baby wasn't Cullan.  It was Gaven, and he was just 9 weeks old.  Logistically, that made for a lot of changes!  We had Cullan's brothers to think of as well.  It is a lot to process when your brother has to have something as major as this done.

Pretty much, everything else stayed the same.  We did our pre-operative testing the day before.  They took blood to get exact matches and checked his overall health to be sure he was up for surgery.  His hospital stay was expected to be the same a week to ten days depending on his recovery.  During the scheduling process, we ran up against some hair-raising dilemmas with deductibles and doctor's schedules being close to Christmas, but finally settled on being the first case on December 13th.

The day/night before, we spent much time in prayer both with friends and as a family. (You can read about 30 Days of Prayer for Cullan here.)  Since Cullan was five and a half this time around, we had concerns for his concerns.  Anxiety, fear, nightmares, strange behavior, anything that was a sign of his reaction to this procedure were on our radar.  As parents, we decided on telling Cullan a few weeks prior to his surgery so he could think, ask questions and be prepared.  He was able to finish up his sports season,

get to know his new baby brother,

and be in the church Christmas program,

and pretty much everything he wanted to be sure not to miss out on.  Thank you Lord, for being in even the smallest of details where Your timing is concerned.

Surgery morning arrived with no complications.  Nothing to eat or drink after 7 the night before, no teeth brushing the morning of.  We arrived at 5:30 a.m. at our hospital to be checked in and to wait.  We didn't wait alone.  Not only did the Lord send His presence with us, but dear friends and co-laborers in the ministry met us there to wait.  We made friends with the fish in the aquarium, and Cullan named a particularly large orange fish "Muttonhead."  We prayed with Cullan around that little fish tank one last time, before his name was called.  Then, Mom and Dad could go back to his holding area room.  Child life brought toys and a cool car to ride to the OR in.   We briefly met with his doctor for one last overview of the procedure.  Clearly, his doctor was in his zone.  For that we were very grateful.

 Apprehension set in about this time, and his anesthesiologists and nurse ended up carrying him back to his operating room.  By this time, it was 7:15 a.m.

Our first update came at 9:10 a.m.  Everything was going well.  Shortly after 10 a.m., Cullan's doctor came out to meet with us.  I honestly thought something had come up that he couldn't finish.  It was so early.  So much earlier than even he had anticipated.  But, contrary to my first reaction, they were finished!  It went amazingly well the doctor said.  He used the rib to cover the opening.  He also smoothed out the bumps and calcification from the first surgery in his forehead area.  He had not needed any blood during surgery.  None!  Maybe the first night, he may still need a transfusion, but they would watch his levels closely.  He was on iv pain medication and nausea medicine. Instructions for the next few months came like rapid-fire.  No anything for 3 weeks.  No rough-housing for 12 weeks (that's 3 months or an eternity if you are a five year old boy!).  His rib incision could re-open. 
Now, as soon as they called us, we could go back to recovery and see him!  This was also a change from last time.  We didn't see Cullan for several hours after his first surgery.

We saw our sweet Cullan all wrapped up again hooked up to many lines.  His favorite animal was dressed and wrapped to match Cullan snuggled up next to him.  They were resting.  Cullan had no adverse reactions to the anesthesia which was a definite answer to prayer.  Some of the children in the other recovery areas were having those reactions and it was very sad.  We waited in recovery several hours waiting for his room in CCU to open up.

ICU first night noticing his bear blanket complete with matching head dressing

Once he got to his room, he had a good bit of pain in his head and side.  He was able to eat a popsicle and a little bit of chicken noodle soup.  By 6:15 p.m., he was asleep again.  He woke up later, nauseous and was unable to keep his popsicle down.  He was monitored very closely and labs were drawn every few hours.  He had a foley catheter and "no-no's" on both arms and legs.  He was an amazing sport.  He had some discomfort from some of the needles, but we could adjust things slightly to help him be more comfortable.  The only time he cried, was when he had to be moved.  His side hurt the most from the bone harvesting.  I was concerned the foley might freak him out a little, but we explained its job, and he thought it was pretty cool.  He even showed it off to one of his visitors!  That night, very late, Mommy had to leave and go home.  Hospital policy would not allow us to stay in the hospital overnight with our baby.  So, Daddy stayed to take care of Cullan, and Mommy came home for a few hours to take care of the baby and sleep.  We texted every hour, but Cullan really rested very well.  I was back by 6:30 and that remained our routine for every day we were in the hospital.  As a mother, there has never been a feeling of being torn more than we experienced that week.  You want to be everywhere, with each child, but when that is impossible, it is heart-wrenching.  It was a true blessing that Cullan wanted his Daddy to do everything for him.  An amazing Daddy.

The view from Cullan's Window---some ICU Christmas cheer

 

The morning of Day 2, the foley came out, and doctor's said his head dressing would probably come off today.  God gave us a scripture for that day that we treasured over the entire ordeal.
Proverbs 14:30  A tranquil heart gives life to the flesh.  We prayed for peace over every situation and environment that each and every one of us would walk in and out of each day of this week.  And He gave it freely.

He resumed his popsicle cravings and did much better with it.  Our focus was getting the normal bodily functions all up and running again.

Enjoying a visit from big brother

Late that morning, the drain that is placed during surgery to drain fluid and blood from the head incision, was removed.  That was not an easy thing to watch.  For one, it was painful for Cullan, and for another, the tubing went on forever.  We didn't think they would ever get the whole thing out.
After that came out, things settled down.  Cullan's labs looked great and we were set to be moved to a room as soon as they could find one for us.  Later that evening they were able to find a room for us.  We spent just over 24 hours in CCU this time as opposed to four days last time.  Such a blessing!

That evening, we got Cullan adjusted to his new room and nurses (who were amazing, every single one of them!)  He had a great night and only woke up to potty once and get his medicines.

Day 3
Meanwhile, his baby brother was not adjusting to his situation quite as well.  He wanted his Momma, and nothing else was working.  But, just as God would work it out, one of the nurses came to us and let us know that we were on the cancer wing.  No one could be there who was sick or had any contact with sickness in the past two weeks.  She said it was the safest place to have a newborn, and he was welcome to hang out in Cullan's room all day and evening.  We just had to go home overnight.  YES! What a blessing.  So that is what we did.  Everyone was MUCH happier.  Cully, loved having a hunk of his family with him.  Brothers came to visit and were very sweet and encouraging.

Bandages came off of the incision today which was painful.  About thirty minutes later, pain was back under control again.

Day 4
Today, Cullan started having stomach aches.  Complications from anesthesia and pain meds tend to upset the gastrointestinal systems.  This is pretty common with any surgery.  The doctor prescribed Miralax to help.  

Cullan experienced a good bit of itching as well as temperature fluctuations this time.  Side effects of anesthesia.

Day 5
Cullan's meal choices by this point are cracking us up.  Grilled Cheese and Cheeseburgers for breakfast...omelets for dinner.

By this point, everything was looking really good.  Incisions, lines.  Gastro system was still the only thing waiting to kick back in.  This proved to be uncomfortable for Cullan...mostly the administering of the medicines to help.  It is difficult to convince your child whom has experienced so much already that more medicine needs to help him get the rest of the way back to normal. 

Cullan's smile is back!

 Day 6
After much prayer and some medicine, all systems were finally up and functioning.  We would get to go home on Day 6?!?  Awesome.  Awesome God.  Awesome Power.  We are amazed at how good He has been to us and our sweet Cullan.  One exclamation made time and time again each day of our hospital stay was the same, "We just can't believe how well Cullan's doing and how quickly he is bouncing back!"  Thank you Lord for amazing Cullan's doctors, nurses and everyone else in between.  We praise YOU!  All glory belongs to YOU.

Our discharge instructions were to keep all incisions dry until our next visit with the doctor in 10 days.  We had cool no rinse soap to take home for bathing that worked great.  Cullan was a trooper at following all the doctor's instructions. 

Goodbye hospital, HELLO HOME!

Cullan couldn't lay flat for six weeks and since his bed is not adjustable, we got creative with boxes and sturdy things, lots of pillows.  Steven and I would rotate taking turns sleeping with him those six weeks, because he would wake up disoriented every night.

Keeping a five year old from roughhousing with three other brothers has proved to be a challenge, but everyone wants only total healing for Cully, so everyone has put their best effort forward.  He has had few minor mishaps, but God has been very protective over him.

Over the last six months, we have been so blessed with health.  Cullan has had no signs of infection.  His eating habits returned very quickly, his sleep schedule is also back to normal.  Our school year was interrupted and we are doing a bit of backtracking there just to be on the safe side and make sure we have a strong foundation before moving on to first grade.

About four months post op, Cullan had some pain issues around the incision which spans ear to ear.  It turns out some of the interior sutures try to work there way out of the skin and that can cause pain and irritation.  Nerve endings will also cause headaches.  He appears to be handling those much better now.

About six weeks ago, Cullan did develop a CSF leak as a result of the surgery.  It manifested itself as  a huge squishy swollen place on the side of his head that I found while cutting his hair.  His doctor said sometimes a tiny pin-prick hole can allow spinal fluid to leak out and cause those large swollen areas.  Typically, the pressures on the inside and out would equal themselves out and it essentially seals itself off which appears to be what has happened for us.  We did read that caffeine can help seal those off, and we did allow him to indulge for about a week.  During that time was when it disappeared.  So, I am not saying that is definitely a solution for every instance, or if God just worked His healing touch once again or He chose to use a little coffee to fix him up.  Either way, Cully is all good now, and for that we are thankful.

We just had our six month post op visit last week which he passed with flying colors.  We are officially on "maintenance".  Any more CSF issues and we report back, but other than that we are at one year now!!!! Awesome God.  Amazing power.

All of you who have lifted us up in prayer and supported us in so many ways can never know how much that means to our family.  We know it will be a testament of God's faithfulness in Cullan's life for years to come as he grows to understand God's constant hand on his life.  We feel privileged to have been blessed with Cullan and praise God for all the ways He has shown Himself faithful to us time and time again.

At least 30 answers to 30 days of prayer.......

Now unto Him who is able to do exceeding abundantly above all that we ask or think....to HIM BE GLORY......Ephesians 3:20-21
1. We truly believe God is being glorified through this. If through nothing more than your prayers, but we know so much more.
And when he had taken it, the four living creatures and the twenty-four elders fell down before the Lamb. Each one had a harp and they were holding golden bowls full of incense, which are the prayers of God’s people. Revelation 5:8
2. Cullan never seemed anxious over the weeks preceding surgery, he seemed to be filled with a peace that passes all understanding....
3. God kept all of us healthy and well...that is a miracle in itself in a family of 6 with 5 germy boys! :)
4. We could not have asked for Cullan's brothers to have handled the entire situation better than they did....more peace.
5. Our family's witness...You know Lord.
6. Cullan's surgical team said they were amazed how smoothly everything went. Better than expected! Thank You Lord. It's all YOU!
7. Cullan's Doctor-Cullan was his first case...he was in the zone ready to go! Thank you Lord for all the ways you prepared this man for this day. The skills you gave him, his talent, ability and drive to be the best at what he does. It comes from you. Thank you for giving us a skilled surgeon who knows You.
8 & 9. Cullan's nursing staff-AMAZING! He got the best nurses anywhere. All were loving, gentle and kind to our whole family!
10. Infection-this is one we are still believing God and asking Him to answer...so far so good...
11. 12. & 13. Blood transfusions---these were all answered above all that we asked or thought...Cullan never needed blood. Unheard of....he was definitely supposed to have at least 2 pediatric units...He needed blood products for 3 days after his last procedure.
14. His pain tolerance was most certainly a gift from God. The nurses would have him choose on a scale of 1-10 with happy faces or faces with tears. He always picked the second one which was a half smile, showing he only hurt a little bit. Can you imagine? God can.
15. Swelling-We kept waiting and waiting for swelling. He swelled a little, one nurse kept saying by morning his eyes will be swollen shut-never happened! His doctor said he just couldn't believe how quickly he was recovering.....:)
16. Cullan woke from surgery perfectly peaceful, no crazy effects to anesthesia. We were surrounded by children not so peaceful in the recovery room, and Cullan never cried or seemed anxious.
17. The bone harvesting was done from the rib-there were no complications.
18. His rib incision is healing nicely.
19. Cullan's appetite and functions returned quickly. He was ordering grilled cheeses and chocolate milkshakes for breakfast!
20. His gastro system tolerated things well-he was only sick one time.
21. His peace filled our home......
22. O.R.--His team said there were no surprises and things went better than expected. I would say the Holy Spirit was definitely present and powerful there.
23. Thank you Lord for holding Cullan through this.
24. Mom & Dad-we endured. We are still enduring.
25. We sensed God's amazing hedge of protection through this time and made a point to focus on HIM.
26. Anesthesia had no problems getting Cullan's lines or monitoring him.
27. Cullan did awesome with his anesthesia (his strawberry air......).
28. Again, his procedure went amazingly quick-we were prepared to be there all day. He was finished in the minimum time that was expected. Thank you Lord.
29. Cullan was certainly a trooper going back for his procedure. He wanted us to go with him, but he was so brave. God gave him special courage and strength and tenderhearted physicians to scoop him up and carry him where Momma and Daddy could not.
30. Pre-op was a breeze, only a few tears in anticipation of the needle stick, but after that he let us know "It didn't even hurt!".
Days 31 and counting.........God has been faithful to us in so so so many ways, the list could go on and on. We praise Him for doing more than we even knew to ask for, we praise Him for you---the faithful who interceeded for us so many days. We praise Him for Godly friends who lifted us up at all hours, for family who re-arranged their lives and so much more. May all who come behind us, find us faithful to Him.
We love You God. Get glory from us.

30 Days of Prayer

30 Days of Prayer
Things we are believing God for in Cullan's life and for our entire family, friends and church....Join us as we pray for these specific things over the next 30 days.

Day 1 That God alone be glorified....Ephesians 3:20-22
Now to him who is able to do immeasurably more than all we ask or imagine, according
to his power that is at work within us to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Day 2 Perfect peace for Cullan in the days before, during and after

Day 3 Health for Cullan and the entire family during this time

Day 4 Cullan's brothers (Ethan and Hayden) as they process all these events

Day 5 Our family's witness

Day 6 Cullan's surgical team

Day 7 Cullan's Doctor/Surgeon-rest/peace/health/safety/sharpness

Day 8 Cullan's nursing staff during his time in the CCU

Day 9 Cullan's nursing staff on the regular floor

Day 10 No infection! No infection! No infection!

Day 11 No adverse reactions to blood transfusions given

Day 12 No secondary issues from any transfusions either immediate or future

Day 13 Minimal blood loss

Day 14 Cullan to have a tolerance for the pain and that it would be minimal

Day 15 Minimal swelling after surgery

Day 16 Peace and comfort as Cullan wakes up after surgery-No Fear or anxiety!

Day 17 Bone harvesting will go well with no complications

Day 18 Incisions at the site of the bone harvesting will heal without trouble

Day 19 Appetite and all functions will be restored normally and quickly following surgery

Day 20 Gastrointestinal system will tolerate medications with no problem

Day 21 We will have perfect peace in our home throughout this time

Day 22 The atmosphere in Cullan's O.R. will be full of the Holy Spirit with no distractions for his team

Day 23 God will wrap His arms around Cullan and His presence will be evident

Day 24 Endurance for Mom and Dad as we juggle home and hospital

Day 25 Protection from the enemy and focus on Jesus Christ

Day 26 Anesthesia team will have an easy time getting Cullan's iv's and monitoring
him

Day 27 Cullan will do well with anesthesia

Day 28 Procedure will go quickly and smoothly-no surprises for his surgical team

Day 29 No fear as Cullan goes back for surgery- smooth transition from Mom and Dad

Day 30 All pre-op procedures will go smoothly with no surprises

December 13th-Surgery Day That God alone be glorified....Ephesians 3:20-22
Now to him who is able to do immeasurably more than all we ask or imagine,
according to his power that is at work within us to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Monday's results of the ct showed more openings that have not fused on the left side of Cullan's skull as well as the one we were aware of on the top. Thankfully the right side fused very nicely. Surgery is set for December 13th to close over the parts that have not fused. For those of you wanting details on how this procedure is done, we will try to explain to the best of our ability.

Details of Procedure:
Cullan's surgeon goes in through the original incision he had at the previous surgery. Once his surgeon sees the size of the holes, he decides whether to harvest bone from the hip or rib. Bone harvested from the hip usually has less chance of dissolving. The objective is for this bone to fuse with Cullan's existing bone and grow with him as he grows. This bone is held in place by some titanium substances--something that does not have to be removed. Cullan will be given blood during this procedure just like the first--which is common for head surgeries. The neuro-surgeon Cullan had the first time will be on standby for anything that might come up that would involve his expertise. After surgery, we will be in the hospital approximately a week with most of that stay being in the CCU. His doctor has said that Cullan will probably experience some swelling again this time to the point that his eyes most likely swell shut, especially since work has to be done on the side of the skull. Many of you have asked how often this procedure is necessary in cases like Cullan's--2%. Two percent of children having surgery to correct craniosynostosis end up not fusing and having to have additional surgery. Thankfully we serve a God who is still very much God even in the two percent times.

Surgery Day Details
Unless something changes, Monday December 12th Cullan will go in early for pre-op testing. That includes bloodwork and a general check up of all his systems to make sure he is healthy and ready to go for surgery.

Surgery day begins early with his case being the first of the day! Yeah! That is a blessing. His procedure typically can take anywhere from three hours on depending on how everything goes.

We appreciate all the prayer warriors and we will try to begin posting specific prayer requests between now and surgery day for you to have to follow.
Thank you for your faithfulness in prayer. Take heart. Be encouraged. Trust God and pray, pray, pray.