27 April 2014

The Beauty of Spring

Springtime has arrived in Ohio!

I spent the weekend working outdoors and it was wonderful! We pulled out the deck furniture and after noticing a number of nicks and scratches to the paint of my vintage glider, decided it was time to apply a fresh coat of paint! After it dried, the vibrant cushions were set back in place and wow, it sure did feel good to sit down for a few minutes to rest, relax and enjoy the serenity of nature. Birds chirping. Warm sun shining. A breeze blowing through the trees... rattling our deep, tenor windchime. Mixed with the scent of our freshly mown grass was the smell of smoke from the burn pile wafting through the air, easing the burden and mental clutter of papers collected and ready to be discarded following some intense indoor spring cleaning. And the dirt under my nails.... there isn't much better during early spring than cleaning out the flowerbeds, sitting beside blooming daffodils, making way for the colorful, petite and fragrant blossoms of summer.. impatiens, petunias and snapdragons, watching the ground as some perennials are already beginning to peek out of the soil and reach for the sun... and the earthy smell of fresh black mulch... I just can't imagine there can be a whole lot more inspiring in life than the wonder of mother nature.

Following our recent celebration of Easter, I couldn't help but spend my quiet time in the flowerbeds thinking about the rebirth and inevitable cleansing that comes with the season of spring. Getting rid of the dead, shriveled and brown leaves to make room for the green life of summer. Letting go of mistakes, burdens and wrong-doings, making room in our hearts for forgiveness and love. Choosing to have faith in the good Lord above and thanking Him for the blessings of every day. Today I am thankful for the beauty and purpose of every single living thing in nature!

20 April 2014

Sometimes we all need a gentle reminder of God's Love / Surgery plan update

I haven't written for a while... I've needed some space and have been using much of my free time to think, reflect and to pray.

The last time I wrote, I was feeling anxious about an upcoming conference call with Luke's surgeon.  I felt responsible for making the right decisions and the stress that came with that was a heavy burden.  Shortly after writing here last time, the Lord sent a friend to our home to pray with our family.  During our visit, we read some scripture and he reminded us to trust in the plan that God has for our family.  After our friend left that day, I spent the afternoon reflecting on how we've gotten to this place... how we came to the decision to go to Boston for Luke's repair.  Of the families we'd met throughout the last year who had also traveled from our general geographical vicinity, 11 hours one way, to Boston for open heart surgery.  Those people who came into our lives at different and unexpected times that had brought us their experiences.  Because of their recommendations, we'd been led choosing to go there ourselves.  I truly believe God was guiding our thought process as we learned the complexities of Luke's specific issues and how different facilities were equipped to deal with them in various ways.  Ultimately, I have to give Him credit for leading us to the best place with the surgeon best skilled to make the repair.

With that positive reminder to trust in God's plan, we entered the conference call that evening with our surgeon in good spirits.  He was confident (as you'd expect), yet was still respectful (as you'd certainly hope).  I continue to be amazed at the new things we are still learning each and every time we have a discussion about Luke's heart.  We've talked about many of the same concepts with different people and each time, there seems to be a new twist to how the information is presented.  Considering this was "the guy", "our surgeon", "the man" who will be doing the job, we took his words with high regard and considered them to trump anything else we've heard from other cardio-thorasic surgeons or cardiologists.  Here are the highlights from our discussion:
  •  Currently, the plan will be to use Luke's own pericardium (fatty tissue surrounding the heart) to patch the ASD and VSD holes.  They will shave some of the pericardium off around the heart and because they will be using tissue native to Luke's body, there is no risk of him rejecting a patch made of synthetic material.  Additionally, the risk of him developing an infection from a synthetic is also diminished!!  Finally, because the pericardium is living tissue, it will have the ability to fuse and regenerate, making it a great long term solution for the repair.
  • One of the most severe risks of the surgery is the potential for Luke to need a permanent pacemaker as a result of the operation.  Apparently, there are microscopic or possibly even invisible pathways where the body's natural electricity runs through the heart tissue, creating a natural pacemaker.  Although it can't be seen by the human eye, it generally runs through the same area in every person - as such, the surgeon just avoids making an incision in that general area.  The catch is that it doesn't always run through the normal place and if it's damaged, it's unlikely that it will repair itself.  As a precaution, Luke will have pacemaker wires placed during his surgery.  My understanding is that it could be 24 - 48 hours until we are certain of whether or not his natural pacemaker was damaged.  
  •  The entire operation should take somewhere between 6 and 8 hours although the actual heart procedure will probably only last somewhere between 60 and 90 minutes.  The entire process will include him being fully sedated, the ventilator will be placed and once it's in the airway, Luke will have a small probe inserted down his throat and into his esophagus which they will use to perform an echo cardiogram to take more pictures and video of his heart.  Apparently this will place the probe closer to his heart than a traditional echo and will allow them to get a better idea of what to expect when they enter the heart.  Next his chest will be opened and the lines for the heart lung bypass machine will be inserted into his arteries .  Prior to making any incisions on his heart, the heart will be injected with cardioplegia, a mixture of potassium and nutrients that will cause the heart to stop beating so the surgeon can work in a bloodless environment.  The heart procedure will be completed, his heart will be restarted and they will complete another of the esophageal echos to validate that the repair worked correctly.  Supposing that's the case, they will close him, bring him up from anesthesia and we will finally get to see him!

It's a lot to consider, but we are praying for continued strength to get through the next few weeks!  We have been receiving some wonderful cards of encouragement in the mail over the course of the last week or so and they have been a tremendous help!  I've been putting each of them in a large envelope in our kitchen and have pulled each of them out a few times to read when I've needed encouragement.  I'm also planning to take them along with us on our trip to read in the waiting room and to display in Luke's recovery room!  We've also even received a few gifts for us to use towards and during our trip... we have been so blessed with loving family and friends!  Thank you so much for wrapping us in God's love and helping us during this journey!!

Coloring Easter Eggs

Today is the day that the Lord has risen!  To celebrate, we visited with family today, ate a wonderful meal and colored Easter Eggs! 

13 April 2014

Easter Egg Hunting

Today we spent the day with some of Dustin's family.. one of the highlights for the kids was playing outside and searching for Easter Eggs and then of course, eating the chocolate and candies that were hidden inside!



02 April 2014

36 Days and Counting...

We have 36 days until surgery.  I wish I could stop time. Suspend it in mid air. Freeze today's frame.

Hold my baby and never let go.

I think I've done well managing our stress... my daily anxieties... although I've begun to feel it catching up with me.  I can hardly sit still.  When I have a moment where I am able to relax, I find myself relishing in busy-ness. To-do lists that never end.  Creating lists reminding myself to make other lists.  Half loads of laundry.  Painting my nails.  Switching clothes in the kids closets and dressers up to the next size.  Cleaning spots on the carpet.  Doing things that could otherwise wait, trying to take my mind off our impending trip and that moment when Luke's heart will be injected with medicine to make it stop beating... that moment when the heart-lung bypass machine will start thumping, pumping and oxygenating Luke's blood on his behalf while his heart is cut and sewn by his surgeon. 

As I read the words I'm writing, inwardly I'm torn between wondering if this is all undue drama or just good-old-fashioned healthy motherly concern.  Maybe it's both.  Regardless, I'm terrified and I'm nearly in complete meltdown mode.  Sometimes I think I could breakdown at any moment and other times I feel strong, hardened by the power of knowledge.   I started crying at my desk last week at work as I looked a photo of sweet Luke on my desk.. envisioning him laying naked on that cold, sterile, steel operating table without a heartbeat.  No wonder I feel anxious... I can't stop my brain from wondering.  When I get to this place, I work hard to pull myself back... while this is a big event for us, these people do this as a profession.  They do it every week of every year.  Our surgeon is an expert with Luke's specific type of defect.  This surgery has a high rate of success. 

He will be okay.  In fact he will be better than okay, he will be better off after the repair than he was before. 


Let go, let God.  Keep praying and loving.  While not without our earthly challenges, my life is very blessed... now, where did I put that to-do list?

Special Needs Grants

I stumbled across this resource last evening that outlined specific resources who can assist with obtaining educational support for children (and in some cases, adults) with special needs. Many of the grant programs are available for technology like iPads!

Special Needs Educational Funding