The longest day of my life…SURGERY-Part 1

12:45am~I finally managed to fall into bed. After so many tears and doubts, posts, and prayers there was no more I could do. I had managed to get literally everything possible done for my guys. I had run Chase through all of the luggage and my hopeful routine for Chandler so he would know where everything was and what I had hoped for Chandler in the very near days. We knew that I probably would not be able to make decisions or be easily available. I had called everyone who was coming up to let them know that we were on and set. We had gotten the call at 4:30pm on Thursday letting us know that they did have a bed available for Cannon in the PICU (such relief yet dread) and that he was the set for the first surgery of the day! We needed to be at the hospital at 6:00am. Cannon needed to have his last feed of breast milk finished by 3:30am and could have pedialyte until 4:00am. I actually went to bed in my capris that I would be wearing the next day because it was like one more thing I could do before tomorrow. I was so scared. When I had talked to my mom earlier and she said “Goodnight, I love you and I will see you in the morning.” My response was “I don’t think so.” I really truly did not think that I could do it, be there, give my baby to a surgeon to do what he needed to change my baby forever.

2:00am~My alarm went off to go get Cannon’s last bottle of breast milk ready. Cannon has been sleeping through the nights from 9:00pm-6:00am since about May. This was such a change for him that he literally did not even open his eyes for this feed. He probably thought I was crazy but he took the full bottle and we both fell asleep quickly after that only my stomach was so tightly knotted that I really thought I might get sick.

3:45am~Okay….well my alarm went off about 3:15 so I could get Cannon’s pedialyte ready but apparently I had not heard it. I got up fast and attempted to offer him the bottle but he seriously did not even swallow one sip. So then I started stressing thinking GREAT they said it was so important for him to stay hydrated. Now what? Well apparently my little guy for the first time in his life was not going to be a part of what was going on. He just turned his head and slept so soundly.

4:10am~ Well after all the stress of not taking the sugar water, I decided there was no more I could do but get up and get ready. I was already half way dressed yet I felt as though there was so much to do to get ready. In all reality there truly was not, but it was just my way of coping. So I got up washed all the bottles, checked and double checked my luggage that I would take to the hospital, pumped, packed two bottles for later, checked Chandler’s bag just in case he ended up staying with one of the grandparents, got ready, packed my cosmetic bag (toothbrush, face wash, contact case and solution) and had my quiet devotional time.  This is what it said: Encouraging Word of the Day-“But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not grow faint” ~Isaiah 40:31~ AMAZING!!! I looked upward and said “Thank You!” With tears streaming down I knew in that moment I would be okay this whole thing would be okay! Tears and lots of them fell quickly and rapidly but I had more to do.

5:30am~ I woke up my beloved Chandler and Chase. My poor buddy, Chandler, is such a sleeper. He LOVES sleep just like some other people I know. Oh yeah, Chase and I! Anyway, I woke him up to be greeted by I think some dreaming because he mumbled something I could not make sense of and then he got up crawled into a ball on the floor and was out. So it took a little more convincing that it was time to get ready. Chase loaded the car. I felt sick again, it was finally here there was nothing I could do at this point to stop it. I had to be brave. I had to believe. I had to trust.
*** I would not have made it through all of this without all of you. I know that so many of you were praying and believing for me when I could not. Thank you!***

5:50am~We left. As we pulled out, I told Chase to stop for just a second because I might have forgotten something. I needed to go back and check. He just looked at me and promised “It will be okay. It is time. I will come back if I need to.” But didn’t he see, I needed to make sure. He didn’t stop he just kept going. However, on the way we hit every single red light. With each stop I would have thought that I would have come unglued and thought it was a sign to turn around yet instead for some reason I suddenly needed us to just get there. Maybe it was in this fleeting moment that I realized if we could just get there then somehow maybe it would all be okay.

6:06am~ (The only reason I know this exact time is because it is on my security badge that was printed on my way in.) We were there, at Children's Mercy. There was no turning back.  I headed up the elevators just me and Cannon as Chase and Chandler were parking the car.  I was not willling to drive round and round in the parking garage waiting with my thoughts.  I signed in with the receptionist, checked in with the nurse and then sat. Chandler and Chase were right there waiting already. I got Cannon out of his carrier and just held him. He was so interested in what was going on around us, he was so happy, so content. We waited and waited and waited for what seemed like an eternity. Families one by one were called back. I watched others and tried to imagine what they were feeling. Did they know what my baby had to endure today? I wanted to encourage the others with even a smile but I couldn’t. I needed a moment. I needed to overcome my own shock of what we were about to experience. Then we heard our sweet baby's name “Cannon”.

6:45am~We were escorted back to the exam room. Quickly ever so quickly the nurse checked everything necessary. Our incredible surgeon then came in. This is when I lost it. I looked in his eyes and I needed him to be strong. I needed him to have angels guiding him and God’s hands to guide his own. At first the tears were just present not falling. He started talking about it all reviewing the procedure and then the tears fell fast and in a fury. He stopped. He took my hand and said words I will never forget and hold close to my heart forever. He said “Don’t worry, I will treat him as though he was my own son. I know it is hard but I promise.” Talk about tears. He then said those all too familiar words “It will be okay.” I nodded and he just stood there so I could have a minute, a moment. He left with a promise to take care of my baby, my precious, precious Cannon. Then I heard it. Chase too was trying to stop his own dam of tears. We sat there Chandler trying to make sense of it. Cannon sleeping. Our tears falling. Then another nurse entered and told us that we had quite a crowd in the waiting room and that the doctor was really ready so she didn’t want to rush but she wanted to make sure we understood everything, had signed all the necessary papers and we still needed to meet the anesthesiologist and the nurses that would be taking care of our baby in the Operating Room. We met with the anesthesiologist she told us what to expect time line wise and then Cannon’s OR nurses came to talk to us. Everyone was ready. Because of our crowd of parents waiting we walked back through the waiting room so everyone could follow us to the “goodbye” spot, to pour onto Cannon one last time before surgery how dearly loved he was and that we planned on him being a super baby so that we could see him soon. When Chase and I first started dating I was young and silly, but I had said that I never wanted us to say goodbye because it was so final instead we say “See ya!” or “I love you!” and just end our conversation. So to us this spot was not one of goodbyes but one of treasuring that last moment before surgery full of love, hugs and kisses and “See you soon little buddy!”

7:35am~ Reunion Avenue. I think that is what it is called. We did exactly what I mentioned above yet there were many many tears and heavy hearts. I think we all couldn’t hug Cannon enough. To me, it was like one more hug and maybe if I just stood for a moment all else would fade away and Cannon wouldn’t have to go through this. Maybe if I just said one more prayer it wouldn’t be true. It would be a miracle. It could be a miracle. But then it was time. Time to hand my four-month-old angel into the hands of two very kind nurses so that they could take him to where his life would forever be changed.

***Note Surgery Date: June 22, 2012
***Cannon's Age at Surgery: 4 months 6 days

Pre-Op

Our day started so early on Thursday. I wanted to leave at 7:00am as the three hour drive might require stops with a three year old in tow. We were close! We left at 7:30 and then turned around because I had forgotten something necessary for surgery day. We finally left at 7:40 with the car loaded…well actually overloaded, my stomach knotted, my mind full of doubt and tears on the verge of falling yet a prayer in my heart for calm, for peace, for success!

The journey was full of discussions of what was to come. We had talked with Chandler a lot about where we were going and why. This was Chandler’s first trip that he could recall that required a long ride in the car. He was so excited to go to Kansas City and yet he didn’t know what Kansas City was. He would ask when we would be in Kansas City and then ask “why are we going to Kansas City?” We would repeat his question back to him and he would tell us that we were going for “Cangen to have surgery.”

Simple.

Right?

With every mile closer I tried to think of other things but my mind would become consumed with what this trip was to entail. I would try to picture everything, picture how I would feel at each point on surgery day and then I would get emotional. “It will be okay”, Chase would remind me. I would just shake my head in agreement and try to change my thoughts.

When we arrived at Children’s Mercy I felt the weight of the entire situation bearing down. Then in the elevator ride up to preadmission’s office we met a father and his son. My perspective immediately was shifted. I still wanted to cry. But I wanted to cry for him, his lifelong battle and the heart of his father to be a constant and continuous caregiver. Chandler was hard distract but in that moment I wanted to glue my feet to the floor as one step closer meant one step closer to the moment that I would trust someone else to take care of my baby while I could not even be present. As I was holding my precious Cannon I wanted to leave to turn around and go back home and enjoy all the things summer was suppose to be.

Maybe there was still time. Still time to cancel. Still time to walk out. Still time to leave. Still time to reschedule for when I was ready.

I wasn’t ready.

There was no way I could allow my baby’s head to be cut open and a large part of his skull removed for it then to regrow itself. No way!

I felt as though it was too cramped in the office. I felt like I couldn’t breathe. I thought I might get sick and then we heard the sound of Cannon’s name being called. I looked but didn’t move. The nurse said it again. I got up flustered not knowing what to take with us back there. All of it I guess.

We updated the nurse on all of his health history. Quite a bit for such a little guy. But we were here now and he was healthy, had been healthy, he was…ready.

I was not.

Then the neurosurgeon’s nurse came in to visit and to make sure that we were ready. To make sure we were prepared. To make sure we were informed. At one point she asked if we had any more questions because if it were her baby she would have a million, but finally for the first time I didn’t have any more questions. I had called her so much for so many questions prior this day. I had researched online. I had questioned our decision. I had questioned my ability to survive this. I had questioned the doctors. I had questioned God. I had had a million questions but suddenly I only had one more.

He would be okay, right?

Because this was my baby and I needed him to be okay.
I needed him.

There was more talk but none of which I could focus on. The preadmission nurse checked his stats and then came the scary visit. The anesthesiologist. I sat there numb. I listened like this was not what my Cannon would have to endure. He would not have those complications. He would not have those risks. Then the anesthesiologist mentioned that the PICU beds were tight. There were not many extra rooms available so there was a chance that Cannon’s surgery would be postponed if there was not a bed available for recovery. WHAT? No! We had not come this close for that to hold us back. Our family was coming. Everyone was praying. Everyone was prepared.

When would we know?

We would need to wait for the call later that afternoon for an official surgery time, an eating schedule of when to stop his feeds and to verify that there would be a PICU bed available for our Cannon.

Our appointment had been early. Too early, because the early time gave us the entire rest of the day to just focus on what the next day was to bring. We checked in to where we would be staying and all I wanted to do was hold my baby and savor every moment. His smell, his warmth, his smiles, his eyes, his love that he had shared so deeply and entrusted us to care for.

We took pictures, lots of pictures. We recorded the boys being brothers, laughing and playing just so we could remember. When the wait was too long tomorrow we could look at the pictures and watch the boys laughing and know that our Cannon was safe.

Safe in God’s hands.


Big brother Chandler kissing his sweet Cangen!





Night before surgery, trying not to smile for mommy!



We're Home!

I wanted to update and let everyone know that we are home! 

We got home early evening yesterday and have been busy doing laundry, trying to catch up on the extreme amount of lost sleep over the last several days, taking care of our sick Chandler and adjusting to our new routine with Cannon's helmet.  I will be updating hopefully like crazy very soon as I have lots of pictures and details to share but I wanted to let everyone know we made it home and are so glad to be on this side of surgery. 

If you would have asked me last week on this very night if I thought that I could be feeling what I am today I would have never have thought it was possible.  I am calm and at peace and so glad to be where we are, HOME and with surgery behind us! 

Although my updates may not be the easiest to write, as reliving all of what occured is emotionally draining I do want to share for all of those who might someday walk through this journey and also to let all of you who supported us and prayed for us to know how each step of the way we felt so much love, support, encouragement and God's hand of grace lifting us and guidng us!

Update #2

We are home!!!!  Well sort of.  We were discharged today at 12:00pm!  But we are still here in town until we receive his helmet and receive the okay to drive home.

Cannon's night last night was an eventful one but I felt as though it was a true blessing that we were required to stay in the hospital through the night last night.  At Cannon's 2:30am feed he took a full 7 ounces which we all rejoiced about but then unfortunately at 3:30am he threw it all up scaring and stressing mommy almost into a frenzy but it was crazy to me at how calm I was while standing there holding him while he continued to get sick over and over.  The vomiting did stop however and then it was time for labs.  Although Cannon's hemoglobin was not where we would like it to be it still went up a whole 1.2 points!!!  Our wonderful surgeon stopped by at 10:00am and his goal was to see Cannon active and awake as the day previous to he had not.  This time I was holding him while we both were resting and the second he walked in I popped out the paci sat him up and tried to get him active.  He did well.  Cannon is a little camera shy though so the second a camera is in his line of vision he becomes silent and not so smiley so you have to be discreet, secretive or speedy fast.  Well when the doctor pulled out his camera after Cannon had been smiling and cooing and talking to the nurses all fell quiet again.  

Currently, Cannon is on just Tylenol!  Can you believe what a brave strong boy he is?  Here he just had a MAJOR surgery and all he needs is Tylenol like normal!  What a boy!  We have had to majorly reduce his amount of ounces per feed but that is okay.  He doesn't miss any meals.  

I have been so impressed with his awake time today.  I was sharing with our beloved family who has been here with us the whole time, that even prior to surgery Cannon did not have this much awake time, which he still does have rest time but I have just been so impressed and wondering if perhaps the enormity of rest time prior to surgery had anything to do with possible pressure he had been feeling?  Who knows.  All I do know is praise our Heavenly Father that we are now on the other side feeling relief and thankfulness that this part of our journey is behind us!  

Again, we thank you so much for all the prayers!  We are praying for a restful night and uneventful evening and a manageable pain level for Cannon.  He is such a trooper!  Or maybe a superbaby!  

Thank you!

Update #1

I just wanted to write and let everyone know what a super baby we have!  Cannon made it through surgery wonderfully yesterday!  They removed a three inch wide section of his skull from the front of his forehead to the back of his head and also some strips down the sides.  Immediately his brain was relieved of pressure which was so exciting yet hard to hear because we had been informed by the first surgeon that there was no pressure. 

He currently is in PICU.  The goal was to be transferred to a regular room today or possibly be sent home however, Cannon's hemoglobin is a little low so they want to watch it a little closer.  He also is experiencing some pain but that is to be expected after all he endured! : (

The feeling that we have at this time is such relief to have the surgery done and our baby back in our arms.  We know that the recovery road is hard but we are so glad that we made the choices we did and we truly felt God's presence every step of the way. 

Thank you for your prayers each one of them have been felt and treasured!

Surgery

It is here. Well...almost.  Tomorrow at 7:30am our precious Cannon will undergo an endoscopic craniectomy to correct his sagittal fusion. 

We hope for a precious evening of pouring our love onto our little buddy. 

We hope for a smooth morning full of peace and strength. 

We hope for a surgery with no complications. 

We are so hopeful! 

If you could please keep a place in your thoughts and prayers for our little boy we would be so very grateful. 

Thank you! 

I will update as soon as I possibly can.

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." ~Joshua 1:9

Today

Today I cried.

Today I stressed.

Today I was scared.

Today I wanted to hide away.

Today I was sick to my stomach.

Today I wanted everything to just stop.

Today I didn’t want to be alone.

Today I wanted to call and cancel.

Today Cannon laughed not knowing what is to come.

Today Chase and I were touched by so many reaching out and sharing with us that they are praying.

Today my thoughts of asking why and blaming myself returned.

Today we received clearance from our pediatrician.

Today I rejoiced in hearing my little angel was healthy…for surgery.

Today I was truly touched by one of God’s earthly angels, my best friend.

Today I had a new mantra “I trust in you Jesus.”

Today we packed.

Today I didn’t want to pack because packing made it more real so I just sat there forever until I forced myself to do it.

Today my Chandler made me laugh so hard yet cry all at the same time because he is such a blessing.

Today it became more real.

Today I was exhausted.

Today is over.

Tomorrow will come. It will be long, but tomorrow we are one step closer to the day. The day that my baby will be placed into the hands of a surgeon and through God we seek a complete healing. I know we must go through today and tomorrow in order to get to Friday but with each step I so desperately want it all go away.

Then today just on cue this is the song that was playing as I got out of the car.

“He Said” by Group 1 Crew
So your life feels like it don't make sense
And you think to yourself, "I'm a good person,
So why do these things keep happening? "
Why you gotta deal with them
You may be knocked down now, but don't forget
What He said, He said

"I won't give you more
More than you can take
And I might let you bend
But I won't let you break
And know, I'll never, ever let you go"
Don't you forget what He said
Don't you forget what He said, He said

Tomorrow

Tomorrow, Wednesday, we go to our pediatrician to receive clearance for surgery on Friday. I honestly am so overwhelmed with emotion at this time that it is difficult to put it into words. I feel so sick to my stomach continuously and my mind does not stop. The awful pit in my stomach that started when we first heard those dreadful words of “craniosynostosis” has returned.

I just look at my precious Cannon and think of what he will have to endure and I want to cry or maybe scream how unfair it is. Although I don’t understand any of this, because none of it makes sense I know that I am blessed. I am so blessed to have gotten to watch my little boy grow and develop into the happy, cheerful, loving little guy that he is. I look to the time where I do not have to be consumed by the stress and anticipation of the unknown and of what is to come with this craniosynostosis battle.

I am so scared of what the rest of the week holds for my precious family that I feel like I am in a constant state of doubt and worry.

I really am struggling with this feeling of being out there alone. Everyone else's life and world keeps going and I for just a moment want time to stand still. I am so scared because I feel like I need to know that Cannon knows how much we love him. I cannot spend enough cuddle and snuggle time with him right now, pouring kisses onto his sweet head, making him smile and laugh, but even Chase keeps on going like there is nothing to worry about and yet I feel as though it is all consuming. I need it to be over, but then I don't even want Cannon to need surgery so then I feel like I am crazy. I am scared to be left alone with my thoughts because they too are all consuming with anxiety and fear but at the same time all I want is quiet so that I can just sit and pray and talk with God. Then I think of all the times that I have needed Him before and I get upset because nothing quite equates to this. I turn on music to try to get the quiet to go away so I will not be overwhelmed with my thoughts. A song will then come on that I can relate to the words and again I feel my heart breaking, my spirit being crushed and the tears start to flow.

During my quiet devotion time today I was reading from Streams in the Desert(pg238-240) which is a daily devotional book my mom shared with me when I first was put on bed rest. I always look forward to my daily devotion as it seems to always provide me with a verse or saying that I need to hear that day or through all of this. Well, early this morning during Cannon’s first feed I was in need of encouragement or perhaps an unknown verse that could quiet my soul and fill my heart with peace. I opened it to today’s devotion and this is what I read…

“Grain must be ground to make bread.” ~Isaiah 28:28
What? I thought this must be a joke, as this was not what I needed today how can this relate to what I am going through? I needed Him and yet this is what I read. I almost shut the book to turn to my other devotional when I thought maybe I should just keep reading. The following touched my heart so much that I had to share it because I do not want to forget today’s devotion for it is one that I will hold close this week and maybe someone else can be touched by the simple unknown verse that held so much power.

“Many of us cannot be used as food for the world’s hunger, because we have yet to be broken in Christ’s hands. ‘Grain must be ground to make bread,’ and being a blessing of His often requires sorrow on our part. Yet even sorrow is not too high a price to pay for the privilege of touching other lives with Christ’s blessings. The things that are most precious to us today have come to us through tears and pain." J.R. Miller
"Difficulties challenge our energy and our perseverance but bring the strongest qualities of the soul to life. It is the weights on the old grandfather clock that keep it running. And many a sailor has faced a strong head wind yet used it to make it to port. God has chosen opposition as a catalyst to our faith and holy service. The most prominent characters of the Bible were broken, threshed, and ground into bread for the hungry…” (it then goes on to share about Abraham, Jacob, Joseph, David and Paul and all of their trials that they endured)

The coming paragraph is perhaps what held the most comfort to my soul today. I had planned on sharing why should I worry about tomorrow when today holds enough worry of its own but this today was what I needed to share. I hope that you can be touched by His words and the simple verse of Isaiah 28:28.

If it is not too much of a burden I do ask for your prayers tomorrow and in the days very soon yet to come. My baby boy needs every prayer possible, as I know that God is the only One who can truly heal our little Cannon. Thank you for your prayers, you too are in mine as I know what it means to lift up our little boy and endure the heartache of taking on our burdens and worries. Thank you!

“Combat comes before victory. If God has chosen special trials for your to endure, be assured He has kept a very special place in His heart just for you. A badly bruised soul is one who is chosen.”
--Cowman, L.B. (updated by Reimann, Jim). Streams in the Desert. Grand Rapids: Zondervan, 1997

Daddy

Chase was the one who took Cannon to the doctor’s office on that dreadful day.  He was taking him in for a stuffy nose that was it. 

Chase is one who sees the positive in any and all situations.  He also is one who needs minimum information possible to prevent him from getting stressed.  As I would find information and read it aloud many times he would ask me to stop.  It is overwhelming, but I am one who needs to go in as prepared as possible where Chase just needs things to occur so he can go with the flow.  When he called me to tell me what the doctor said.  I could hear in him the stress.  Due to the sound of stress in his voice I knew the seriousness of it all was intense.  When I called with the results of all the testing Chase was speechless.  All he could say was “I’m sorry.”  I know that each person handles grief in his/her own way and Chase’s way of handling it is avoidance.  Avoid talking about it, avoid reading about it, avoid looking at it as though it is real.  But as awful as it is, it is real.  I get frustrated and then he gets frustrated because he has no fear, his ultimate faith and trust is that Cannon is in God’s hands and although I too trust my Father it is a bit more difficult for me to remain calm about it.  But that is just how my Chase is. 

He is calm. 

He is accepting of that fact that this situation is out of our hands, out of our control, he understands there is nothing we can do but accept Cannon’s diagnoses and go on to solve it the best we can.  We are just instruments of God. 

I am opposite.  I ask him a million times, will it be okay?  He ALWAYS says “It will be okay bud.”  I don’t even have to ask him and he will say, “It will be okay bud.”  Never frustrated but just as though it is his job to make sure that all of this will be okay.

I wanted to look back on all of this when it is finished and have Cannon know what his daddy felt because we are so different yet he is still his son.  Cannon is still his boy.  Cannon loves his daddy dearly, when daddy walks into the room Cannon lights up and starts talking so loud and so excited.  His first laugh was at his daddy.  His first conversation was with daddy.  He LOVES his daddy! 

So here is Chase’s letter to Cannon! 

We love you Daddy!

Cannon,

Hey little buddy!  I wanted you to know how much I care about you and love you! 

When I first heard what the doctor was saying about your head I was scared for you.  I didn’t know what was going to happen but I knew that everything was going to be okay because God is faithful.  When the results came back confirming what the doctor said I was scared out of my mind.  I couldn’t picture what all you would have to go through being so small.  Then when we found out that our only option was surgery I needed to know you were going to be okay.  When we heard about the first procedure I was devastated.  We had to find another option.

I trusted God would be with us every day and every moment through this.  As the first surgery date neared, I was so hopeful that there would not be a need to reschedule.  I wanted to take your sickness away so that you could be strong and healthy.  You are so courageous!  You fought through that and now as another surgery date is so close I want you to know that I love you with all of my heart. 

Your mommy, daddy and brother will be there with you.  We know that God will protect you and guard you.  We trust that the surgeon’s hands will become God’s hands touching you with His healing grace and power.  We hope that the procedure will be quick and easy so we can get you home to keep on playing! 

I love you very much! 

Your Best Friend,

Daddy

Then and Now and In Between

I wanted to share some pictures of our precious Cannon!  We ask that you pray for our little love.  We are at nine days to surgery and counting down.  Although we have been that close once before with each passing day I just hold him and struggle with the why.  Why him?  Why my Cannon?  Why us?  Why this?  Why?  I also think of what is to come for our little man.  I had been so looking at surgery as once we got through that then it would be downhill from there, however, in reading through my support site the helmet is perhaps harder than the surgery itself. 

I am still so heartbroken in this moment. 

We pray that Cannon can stay well so that he will be granted the opportunity to have the surgery endoscopically. 

We pray that he will have a guardian angel there comforting him and protecting him during surgery. 

We pray that the surgeon's hands come one with God. 

We pray that Cannon's delicate body and brain will stay safe at the hands of the surgeon. 

We pray that complications are nonexistent. 

We pray that we can be strong for Cannon. 

We pray for a complete healing. 

We pray.

As a mother this is perhaps the hardest part. 

I feel like I can do nothing. 

Yet I can pray. 

"Father, please hear my cry.  Please heal my child.  Please spare him from this.  I will take this on.  I look at my son and I know you created him, you sent him to us from heaven above, and although I do not understand any of this I know that you are strong enough, you are bigger than this, we entrust our precious Cannon to you.  Please be there with him.  Please be here with us.  I ask this of you.  PLEASE hear our cry."

For when I am afraid, I will trust in you. ~Psalm 56:3~

Craniosynostosis

Craniosynostosis affects…

Your joy,

Your hope,

Your mind,

Your faith,

Your trust,

Your peace,

Your marriage,

Your emotions,

Your friendships,

Your outlook on life,

Your ability to think clearly,

Your trust in the medical professionals,

Your ability to see constant imperfections,

Your ability to stand independently,

Your ability to be strong,

Your ability to believe,

Your life.

It consumes my every thought and at times, it is relentless.  Just today, I was watching Cannon play with his daddy and I saw it.  I saw a glimpse of no worries, no stress, no need for surgery, no need for a helmet, no craniosynostosis and then it came punching me in the stomach that is not our reality, that is not our life.

Yet, I lift up my eyes to the mountains—where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip—he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep. The Lord watches over you—the Lord is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The Lord will keep you from all harm—he will watch over your life; the Lord will watch over your coming and going both now and forevermore. ~Psalm 121~

Postponed

Cannon was scheduled for surgery on Monday, June 4th.  Well that day has come and passed and we did not have surgery. 

I have questioned so often why and I do not understand.  I am crushed and heart broken as I had aimed for that date, prayed for that date, others were praying and yet for reasons unknown to us we were not to have surgery on the fourth.

Over Memorial Day weekend Cannon was not feeling well.  As Saturday progressed and Cannon did not get better we decided to head to immediate care, where the doctor diagnosed him with a double ear infection needing to be treated with antibiotics and recommended some probiotics for his tummy troubles.  I asked her if she thought that surgery would still be able to take place and she thought there would be no worries, but recommended that we schedule a follow up with our regular doctor and contact the surgeon’s office on Tuesday just to let them know.  By Saturday evening though Cannon started running a temperature and was sounding very congested. 

I started stressing.  The pit that was in my stomach that brought on a constant nauseated feeling during all of the stress of tests, diagnoses, appointments and decisions returned.  I had begged the scheduler to promise that surgery would not need to be postponed due to the lack of beds or operating room space and yet here we were knowing that because of sickness surgery would be postponed.

Once again though I was hopeful.  So hopeful.

After all, the immediate care doctor thought there should not be an issue but she hadn’t seen Cannon with all the symptoms that became present with his cold.  As the weekend drew to a close, I silently knew in my heart that surgery on June 4th would not happen.

When I called on Tuesday, the surgeon's office informed us that Cannon definitely would not have surgery on the fourth due to his ear infection, his need of an antibiotic, his cold and congestion.  The nurse also informed us that we would need to get clearance from our pediatrician prior to a reschedule.  We have not received clearance because Cannon was still stuffy sounding on June 4th at our follow up, but the surgeon seeing the urgency of the situation has rescheduled for Friday, June 22nd in hopes that Cannon will be healthy and be clear of infection, not need medication and will have not had congestion, coughing or breathing troubles for at minimum two weeks.  We will return to seek clearance from our pediatrician on the 20th. 

We were so hopeful that there would not be a need to reschedule, however, we understand the importance that Cannon MUST be healthy in order to have the most successful surgery, but we beg and plead that Cannon can stay healthy so that we may put surgery behind us.  We so gratefully would appreciate prayers for this to be the case, as our time is running out for the endoscopic surgery to be an option. 

Once again we wait, only being able to pray and hope. 

We will hold onto our hope that Cannon will stay healthy but the undo stress that comes with avoiding all possible group situations, limiting visitors and constantly wondering if one of us comes down with something will he be protected has truly become unnerving.  Unfortunately, waiting also leaves me to stress and worry more, research and rethink more about things that I thought I was done thinking about.

In some ways now that the 22nd draws closer, I am grateful.  I am grateful for more snuggle time, I am grateful for more smothering kisses on Cannon’s head, I am grateful that I have gotten to have more time pre-surgery.  However, in many ways I am anxious.  I am anxious about another postponement, I am anxious that maybe this isn’t the choice we are to make, I am anxious that we cannot protect Cannon enough prior to surgery from illness or sickness.  I also get saddened by the thoughts that at this point we could have had the operation, started and been a week into helmet therapy.  I also get sad when people comment on what a cutie Cannon is and I wonder in a month how people will react?  Will they just stare?  Will they take pity?  Will they ask?  Will they wonder?  Will they know what we have gone through? 

Chandler

When I first found out I was pregnant I worried about Chandler adjusting to being a brother.  He was the first grandbaby on both sides of the family and he was treated like a prince (as he should be).  I loved that Chandler had gotten to experience the sole role of being an only child.  I had always planned on having three little loves running around but then with Chandler’s early birth and complications from being premature I had convinced myself that maybe we should just have one precious little one.  Then we found out I was expecting and I cried.  Surely Chandler would be okay right?  When I verbalized these thoughts, my mom ever so gently reminded me that I had survived my childhood and it did include my little brother!

I know it was all unreal to Chandler as to how his world would change and what was happening inside of mommy but we were shocked when we took him to our first ultrasound and he immediately responded by stating that there was a baby inside of mommy’s tummy and identified all the parts all the while knowing that it was mommy’s new baby. We also immediately began discussing the possibility of names.  We wanted him to be a part of it all hoping that the bonding could start early so that he would “survive” being a brother.  I bought books and we watched movies about new babies joining families and we constantly talked about the new baby as if he/she was a present part of our lives. 



Chandler kissing my belly!



The first time Chandler felt our little one kick, Chandler laughed and laughed and then he wanted to feel it again and again and again.  Then one day as I was sitting on the floor he put his feet on my belly.  I asked what he was doing and he told me he was kicking the baby back!  He loved his new baby and they had yet to even meet.  He would constantly kiss my belly, talk to my belly and put his hands on my belly waiting for the baby to kick and when he would feel the kicks and punches his eyes would light up and he would then ask me to “feel his baby”.  He would move his tummy in and out as fast as he could imitating the feeling of the baby kicking! 

As we prepared the nursery and would pull things out we made such a big deal about how this once belonged to him or how he once used this as a baby.  He would get so very excited to help us clean things and would pick out toys that he could share with the baby.

Two days prior to Cannon's arrival

When I went on bed rest Chandler was my strong hold.  Although he still had to attend daycare, as I was not allowed to care for him full time, he would bring stacks of books for us to read together when he got home.  He became my encouragement.  I lived for the times that we would nap together. I treasured all of the times when it was just the two of us because I knew that when the new baby came it would be new and different.  One evening, I went to read Chandler his new Valentine’s book on the couch when suddenly my water broke and Chandler’s life would forever be changed.  When Cannon was in the NICU Chandler was not allowed to see his brother but he was already protective, informing people that his brother’s name was indeed not Cannon but Cooper (Cooper was our other name choice). 

Boy did that take some convincing!



First time seeing Cannon!  Chandler was SO excited!







   



 

Finally when we were moved to the Special Care Unit Chandler was able to see his brother for the first time.  It was the sweetest moment, one that I will always treasure!  Chandler was a big brother and he was immediately in love with his new brother!   

 




Our first day home!

 Chandler did not get to revisit us while in the special care unit because he came down with a bad cough.  But every night we would call to talk to him and he was ready to come home and he was ready to see his brother, Cannon (pronounced Can-g-en according to Chandler).  The day we were finally released Chandler could not stop jumping he was just bursting with excitement for us all to be together. 



He wanted to be a part of EVERYTHING!

 

Once home, Chandler would constantly ask, "Can I hold baby Cangen?" Too sweet!



Nothing was problematic.  Cannon spit up, “Oops, momma Cannon spit up.  We need a burp rag”.  “Oops momma, Cannon poo-pooed.  We need a diaper.”  When Cannon would make a mess, spit up or get frustrated Chandler would ever so gently remind me “Don’t worry momma that is just what babies do!”  HA!  What a baby pro he had become!

Chandler also was so very proud that Cannon would wear his clothes, he would say “Look momma, Cannon looks so cute!  I wore that when I was a baby!”  Whether or not he did we would always agree! 

Chandler also ALWAYS wanted us to take a picture of Cannon and himself because “Look at us momma!  Aren’t we cute?  Hurry and take our picture!”  I would then have to proceed to take multiple pictures of them and then show Chandler and he would be so proud! 

Being silly and having fun~just being brothers!

 



Chandler was taught very early on that we cannot touch Cannon’s hands so he touches and plays with his feet, he constantly is kissing them or kissing his head because he LOVES him so much.  Chandler nightly is so adamant that he must take a bath with Cannon and he reminds you constantly.  He also will get so upset if someone else tries to “talk” with Cannon when Chandler is talking to him.  He loves to make Cannon smile and makes it his job to inform me when Cannon is crying and why!  Chandler takes his job so seriously!  It is absolutely precious!  I will treasure all of this forever (and of course remind him of how much he loves his brother when he doesn’t feel all the love)!

Kissing and hugging Cannon. Notice the matching outfits!

Chandler was and is a changed little guy.  He is protective.  He is loving.  He is a big brother and he loves it!  I look at my two boys while they sleep and I think of how truly blessed I am.  My boys are beautiful.  My boys are wonderful.  My boys are perfect! 



Chandler has become my constant source of hope during this craniosynostosis trial.  I hold him forever and just thank God!  He has seen me cry, he has seen me stressed, he has seen me worried but all throughout it he will remind me “Momma put on a happy face”, “Momma dance with me!”, “Momma, but I love you.”, “Momma can I have a kiss and hug?”.  It is like he senses it.  He knows that something is not right and yet God gave us our precious Chandler to be our source of comedic relief during this situation, to give us a precious reason to keep on going, to realize there is more to life than just this situation, more than my grief, more than my sorrow, there is the love of a three year old and how I wish everyone could get to experience that because there is nothing more beautiful.  I have gotten to see Chandler grow tremendously while caring for Cannon.  He treats being a brother as though it is a privilege and I love him so dearly for that. 



Bath time with my buddy!

I finally sat down with Chandler and talked with him about Cannon’s situation he listened so intently.  His eyes held mine and my heart broke.  I explained in a way that I knew Chandler would understand.  Once I finished talking about it, all I could say was, okay buddy?  And he so seriously said “But momma, I just want Cannon to be healed.” “Me too buddy, me too.”  My heart broke.  How desperately that had been my cry.  “But momma can he just be healed?”  “Yes, buddy that’s why Cannon has to go to the doctor the doctor is going to help heal Cannon.”  “No momma not with the doctor, just healed.”  Again, my cry.  We talked more about it then he hopped down and went to kiss Cannon’s feet as if maybe that would help.  Tears ran down my cheeks.



We love you big brother!