The tide has come

Good afternoon warriors,

Dan stayed over with Isaac last night and Isaac got some good sleep.  Gabe, Micah and I headed over around 6:00 and Isaac was still sleeping when we got there. 

Isaac was such a brave boy this morning. He was nervous about surgery but went in with his game face on. His brother Gabe sent him text meme’s (which are funny picture clips) which kept his mind off of things in pre op prep. I was able to go back with him into the OR while they put him to sleep. He giggled at the images and then quickly fell asleep. 

Dan gave him a great pep talk which helped calm his nerves and Gabe was a great support. 

Everything began around 7:30. We will receive calls every two hours or so from his nurse. The actual surgery began around 9:00 after they had intubated him and placed a picc line.

Surgery days are hard.  There is a range of emotions.  You don't want your child to go through surgery, and you wish you could take his place.  Now that he is older and I can see the fear in his eyes, breaks my heart.  He understands what is happening and that is hard.  But on the other hand, we have great hope for the outcome that this surgery will bring.  We know with this change for him, his life can be easier.  It's all a part of his birth defect; making decisions about his medical health to help him have the best quality of life and make things work for him.

Surgery does not define him, nor us as his parents, but it does impact it.  

I was sitting thinking about this journey .  An ocean wave comes to mind.  I feel like God is the ocean, controlling the tide as it rolls in and out.  Its fluid and changing and we can not control it.  But, we are all given a boat to steer on our journey in the ocean.  No boat is the same, no ride is the same.  We are given the keys to our children's boats until they are fully ready to drive their own boat.  We still aren't in control, but we can use the knowledge in our minds and love in our hearts to be our compasses. The boats we are on ebb and flow as the tide rolls in and out.  Sometimes we need extra oars to get through the rough tides. 

I had to hand over my steering today to Dr. Gearhart.  I want to be in control and know exactly what is going on, but we all know that just is not possible.  I have to hand him over and trust that Dr. G and his team will ride this big wave and control the boat so that Isaac can eventually take over the wheel with more ease.  

And, I also need to hand out oars.  And that is where you all come in.  All you prayer warriors.  All of you out there thinking of Isaac.  Each time you pray, or hope or send a wish for Isaac, you are taking a oar and helping push his boat along.  You are riding this tide with him.  All because of love.    

This surgery is all a part of his life, a tide in his journey.  Thank you for filling his boat with love.  

Baltimore

Wow, as I look through the blog, I see that it has been 5 years since I have written on here.  It's not that I have not wanted to, but life has been busy and in many ways, Isaac's life has been one of a typical kid.  He has his own activities he is involved in and his medical needs have been minimal.  Life is good!  Isaac just finished first grade and has grown and matured in so many ways this year.

If you know us or have followed since that time, you know that the resurgence of my writing on here comes as we enter a journey of surgery.  It has been 6.5 years since Isaac has had major surgery.  And tomorrow, he faces a big urological surgery.

We knew that at some point this would be a surgery would be one that would likely be important for him as he grows physically and emotionally.  It will ultimately give him more independence and he has expressed the importance of that for himself, as well as we have observed in him.

Making medical decisions does not come lightly for us, so we thought long and hard and prayed about the best place to do this surgery for him. We decided on coming to Johns Hopkins Hospital in Baltimore, MD.  We have had so much support from family and friends; everyone has given support in their own way and we couldn't be more grateful.  Friends have showered Isaac with love by throwing a send off neighborhood party, teachers, friends and family and sent him activities and games to play while we are here, my parents have babysat for us so that we could prepare for this big trip (and get our house ready, because in the midst of being in Baltimore we are having our basement finished)  and Dan's parents are coming out with us and renting a home so we can have all our children together as Isaac recovers, to which we are so thankful that we can stay together and Isaac can recover as "normally" as possible.  Please know we are blessed and thankful for everyone's love and support and selfless giving.  And that without a doubt this includes all of the prayers and positive energy that everyone is sending.  If you've read any of my writings in the past, you know that I 100% believe in the power of God's love through prayer and positive thinking.  Isaac has always had such a wonderful team of warriors carrying him through these hard times.  THANK YOU ALL!

So, for all the updates, we drove out to Baltimore with Gabe, Isaac and baby Micah yesterday.  The girls are staying with Grammie and Papa and they will drive out Saturday when the get keys to the house.  We were admitted today to do bowel prep for Isaac.  He has been such a trooper.  The best part of his day is playing Xbox all afternoon.  He, dad and Gabe are all working on conquering Spidawick! The worst part he will hands down say is the NG tube which is getting the "Go Lytely" medicine to clean out his bowels.

Surgery will be early and they will likely take him down to surgery prep at 7:00 am.

Thank you again for your support and love and prayers.  Here are so pictures from our trip out, our night last night at the Children's House and some hospital time today.

So many wonderful gifts for all the kids!  They will not be bored!

This hospital is huge!

Game time last night at the children's house.

The children's house is so fun!

Isaac is soaking up some xbox time in the hospital.  Micah is cheering him on. (or maybe just trying to chew the controller!)

The girls are having a blast with Grammie and Papa.