It’s 3:11am and I’m been awake since 1:00am. This is a normal occurrence. I’m pretty sure I’m not alone in my 59 year old body, with sleeping being a major issue in my life. It’s stupid and while I lie here angry at my body for not resting. I’ll update this space on Benjamin.
Benjamin had open heart surgery yesterday at Shands Pediatric Hospital in Gainesville Florida. How lucky are we to have a leading Children’s Hospital in our back door?

The day began early. Justin and I left home at 6am since we were told they could come as early as 7:30am to take Ben for surgery. Steve stayed home with the three big boys so that I could go to the hospital for the day.

I hadn’t seen Ben or Courtney in 12 days except through FaceTime. We are constant companions in normal circumstances so our lives have been different and I seriously miss her presence.

Upon arrival to the hospital, Ben and Courtney had been moved to the pre-op surgical floor. Little Ben gifted me with a smile when I opened the door to the room and I melted just a little. Today was going to be a big day.

I wasn’t sure I would even be allowed to see him let alone hold him and my wish was granted.

Around 9:15am, I saw a familiar figure standing outside our room. My sweet friend Wendy had come to the hospital and was praying with her hands against the wall outside our room.

“What are you doing here?” I asked after hugging her.

“I came to take care of you today” she said. “Courtney and Justin have each other and I’m here all day.” I cry as I type. I would never have asked anyone to come. Women are so prideful and we think we can do it all, give all we have and never ask for anything in return. We are WRONG and Wendy’s presence yesterday was a gift.

Bens surgery was supposed to take 6 hours give or take. The surgeons Nurse Practitioner Michelle kept us informed of the progress throughout the day and around 3:00, Ben was off of the heart by-pass machine and his little heart was repaired and beating on its own.

Relief is such an understatement but we knew that Ben would remain in the hospital for another 3 weeks as he healed from the surgery.

Two hours later we move up to the ICU floor waiting room. We would wait for Ben to come out of the surgical floor and be moved to the ICU.

Would we see him?

I was hopeful but skeptical. What would he look like? He turned 6 months old this week but he is still the size of a newborn. He has been sick his whole little life and while this day is a new start to Bens life, what will we see? The surgeon warned of swelling. Lots of babies retain fluid and they can look full and unlike themselves.

The baby bed pulls up to the door and we see Ben. He is covered with a sheet and is attached to many machines. There are five grown adults walking beside his bed. I look directly to the anesthesiologist, who we had spoken to earlier in the morning, and his response was, “He did great!”

I cried in relief.

The anesthesiologist said they would be taking Benny to his room and tucking him in. It would be another hour or so but Dr. Bleiweis would be by shortly to speak to us.

Two hours later. Dr. Bleiweis, Bens surgeon and world renowned Pediatric heart surgeon came through the door. He is smiling and so kind.

We look for news in his eyes and while he said Ben is doing great, he also said that the hole in Bens heart was HUGE. He had two holes in his walnut shaped heart separated by a strip of muscle that together made a very large hole. His words were “I’m not sure how Ben held on as long as he did.” While we knew Ben was sick, thoughts of him “not hanging on” was never a blip in my mind. Ben now has a patch covering the giant hole in his heart. The hope is that as his heart grows, the patch remains and no further surgeries will be required. His aortic arch coarctation was also repaired and it is hopeful that it will also not need any further surgeries.

Dr. Bleiweis drew me a picture of Bens aortic arch coarctation. The top is “before” and the bottom is “after.”

How someone can fix baby hearts is a mystery to me.

Bens recovery will be intense for a few days. He will have to go back to surgery in the next couple of days for a small procedure. Everyone, especially his Mommy is struggling with exhaustion.

Continue to pray for us? While the surgery day is behind us, the upcoming days will be difficult.

I will end this update with a song that has been swirling since my 1am wake up call.

https://youtu.be/Z32HiCoFzlU?si=mL5IHO4uAXJi2KM4

Holy, there is no one like You
There is none beside You
Open up my eyes in wonder
And show me who You are
And fill me with Your heart
And lead me in Your love to those around me

Father God,

What a good God you are. Thank you for the gift of Benjamin. Thank you for his little life and for allowing us to be his family. You created him and knew him before he was even born. We praise you for him. I pray tonight/this morning for his parents. I pray you give them strength in the coming days. I pray you touch their bodies in miraculous ways. Allow people to see your love through Courtney and Justin as they care for Ben and interact with others. I pray for Bens Doctors and for the other caregivers that will be in his presence. I pray for the community that surrounds this family. The hundreds of people that have prayed for us the past months and who will continue to pray to you on our behalf in the days ahead. As Steve and I stand in the gap caring for little men; give us strength. Give us patience and an extra abundance of love as they miss the normalcy of their parents. I pray for rest. I asked that you fill us with whatever it takes for the coming weeks. We will continue to praise you in this storm and are eternally grateful for the love you show us everyday.

Thank you in advance for your love and the guidance we receive daily.

In Jesus Holy name.

Amen