surgery – Ben For The Win

Two little letters, vowels, that quite honestly have changed me. I have debated for a long time about how detailed I would get in sharing Ben’s medical journey. Partly for his privacy, partly because it gets pretty technical and hard to explain, but mostly it was just because it was something I was hoping to wipe away as part of Ben’s past and pretend like it never happened.

I found myself last December trying to ask for detailed prayer requests, hoping that the puzzle piece clues I was sharing would be enough. That somehow I could be vague in my prayer as well, asking the Lord to take away this difficultly without my family really having to go through it. But through it, we went.

01/17/19 dawned in with the usual mundane routine that I would have to go to my doctor’s office for the umteeth time, sit for 30 minutes on monitors checking for my contractions and watching Ben’s heart. Ever since we discovered Ben had a heart defect when I was 19 weeks pregnant, this was my routine 3 days a week. NSTs (Non-stress Test) and a once weekly BPP (Biophysical Profile) became my routine. I was looking though the archive feature on Instagram and saw that I even posted a picture commenting sarcastically on how beautiful the carpet was in my doctor’s office on this day. The first several tests were nerve-wracking, but after more than 30 of these tests, I began to think they were useless. However, at 36 weeks 4 days, my BPP showed that the amniotic fluid was all but gone, we would need to go for an emergency c-section. (Don’t ask me where it went, I still don’t know that answer. haha)

Cody and I hurried home and got our bags and met the doctor at the hospital. Anxious, but excited, we were so glad to still be in Amarillo, after doctors in Fort Worth gave us the all clear that Ben would not need to have surgery for the first several months of life. After a successful procedure I heard Ben cry and I cried, I got to kiss his sweet cheek and I sent Cody after him as he went to the NICU for testing. As any c-section mama knows, that time on the table after the baby and husband are gone can be so hard, traumatizing I have even heard, because you are just wanting to be with your baby. However, I was radiating. I had done it – I delivered Ben, in Amarillo and was awake to hear his cry. This was especially exciting for me, because I had to be put under general anesthesia with my daughter Genevieve due to a complication with the regular spinal block, so Ben, as my second child, was the first that I heard take his first breath. A special moment I will always treasure.

Mom and Ben in the operating room — Meeting for the first time.

On cloud nine, partially because of the aforementioned euphoria, partially because I was quite drugged up, I was wheeled to the recovery room where I saw Cody standing waiting for me. Confused but glad to see him I remember just saying, “We did it!” He smiled and held my hand. The anesthesiologist came in and explained some of the things to expect recovering from the procedure. Cody waited until he left the room and turned to me. I could see something was wrong and I caught my breath. Cody explained, “Ben has another congenital defect. The neonatologist is coming in to explain it. It is called Imperforate Anus (IA).” Eyes swimming, we listened as the doctor explained that Ben did not have an opening on his bottom. He explained that he was talking with the pediatric surgeons in Amarillo, but it was highly likely that Ben would need to be transferred immediately to a Children’s hospital to preform the procedure. Ben would not be allowed to eat until he had surgery.

My cloud nine euphoric balloon deflated immediately. Cody walked next to my hospital bed as I was wheeled back to a regular room where our family waited. He explained the circumstances and the neonatologist came back in to let us know that Ben would indeed be flown to Fort Worth Cook Children’s hospital to receive surgery. The nurses graciously worked with me and against protocol to get me out of bed so I could go to the NICU and see Ben. I got to hold that sweet little baby for 45 minutes before he was loaded up in what looked like an incubator being launched into space.

Mama holding Ben for the first time, before Ben flies to Fort Worth.

Ben in the flight incubator. — Ben ready to fly.

Cody and his parents set out in a car chasing the jet. Ben received his first surgery on 01/19/19 where Cody was able to be with him and care for him. I was recovering in Amarillo from my own surgery, but was able to make it to Fort Worth the afternoon after Ben’s surgery was performed. The best way to explain his surgery regiment is to watch this video from Colorado Children’s hospital. Ben thankfully did not have any sort of connection to his renal system, but everything else is a very accurate depiction of his surgeries last year.

01/19/19 – Ben has colostomy placed so he can begin to eat.

04/11/19 – Cardiology decided Ben’s heart is taking too large of a toll on his lungs and that we can’t wait any longer to do heart surgery.

04/12/19 – Ben has his AVSD repaired at Cook Children’s hospital.

We need to wait at least 6 months post heart surgery before attempting surgery again.

10/12/19 – Ben has his pull through surgery. This surgery creates an opening on his bottom and the doctors pulled the lower colon through the opening. This surgery was done laparoscopically, and we went home the same day. (*insert terrified wince*)

12/5/19 – Ben goes in for his colostomy closure. It is 5 days before he passes any stool, and the whole time his tummy keeps swelling and he barely eats.

12/11/19 – Doctors decide the previous surgery has failed and we must place the colostomy again. Ben returns to surgery and it is discovered that his bowel had opened internally at the surgery site causing stool to cover his abdominal cavity. The doctor did a thorough cleaning and replaced the colostomy. Back to square one.

12/15/19 – Ben develops an infection from the stool that was in his abdomen, and his wound dehisses (stitches open). We are given a wound vac and a central line to administer antibiotics.

12/23/19 – We are discharged and allowed to continue our wound and infection treatment at home.

Since the surgeries we had in December, we have taken a break from surgery all together. Ben was worn out and so were we. We needed to allow him to just be a kid again, and he has thrived. In June, we decided to go get a second opinion from Children’s Colorado and received the devastating news that the surgeries in October and December of last year have done more harm than good. Basically it all boils down to the decision to do Ben’s pull through laparoscopically. Our new surgeon, Dr. De La Torre, explained that due to the complex anatomy of the muscle structures around the anus, it is not a surgery that is well suited to be preformed laparoscopically and requires a full PSARP (<- very detailed video). He explained that because of the stool covering his abdomen and subsequent cleaning – Ben’s serosa (outermost layer covering the intestines that allows them to be slick and not stick to each other) would be damaged. That brings us to this month.

On September, 16th Ben will have the PSARP surgery. The lower part of his colon that was used during the last pull through, is damaged and will need to be removed. Dr. De La Torre will take the intestine from Ben’s current colostomy site and pull it down to his anal opening and create a new opening. He will then turn Ben over and create a new colostomy to allow the anal opening to heal. Due to the damage to the serosa, he will also preform exploratory surgery through his abdomen to release any scar tissue that may have formed since Ben’s last surgery.

So all of this long explanation, I provide, to ask you for this. Please join us in praying for these very specific prayer requests:

Ben is much older and much more active now, please pray he would be content to be still when his body calls for rest, and eager to engage when therapy requires it.
Pray the blood supply to the active part of his colon would be strong and healthy.
Pray that the damage to the serosa would be so minimal that little scar tissue release would be required.
Pray Ben’s body would be reactive and healthy to heal the surgical openings and stitches would hold well.
Pray for Ben’s medical team, that they would be well rested and alert when I know they are weary from the long months effected by COVID.
Pray that infection would stay away, and Ben’s immune system to stay strong.
Pray for our hearts, they are heavy and anxious in walking back into something that has caused us so much pain in the past.
Pray for safe travel.
Pray for my sweet girl, Ben’s big sister, Gennie, as she stays in Amarillo, until we get past the hospital stay in Denver.

We are so grateful for everyone walking through this journey with us. And while I am sure this blog was too much information, I hope it provides some clarity to our story that allows you to feel empowered to take these requests to the Lord. We know He is faithful to walk us through this as we enter back into a season of surgery, and we are praying for healing. Six to eight weeks after this surgery we will have the colostomy closure surgery and are praying that these decisions and surgeries provide Ben more comfort and independence as he grows. We are so proud of our guy, Ben.

One year. It is hard to believe and seems long overdue all at the same time.

Last picture of Ben's chest pre surgery. — Last picture of Ben’s chest pre surgery.

On April 12, 2019 I woke at 5:30 in the morning, quickly brushed my hair and teeth, changed clothes and then scooped my little man out of bed. I prayed silently over him and snuggled him close breathing in his familiar scent and running the tip of my nose along his sweet little jaw. Our hotel room was quiet as I let his dad get ever ounce of sleep he could out of our sleepless night. We eventually were all up, dressed and ready. We applied the antibiotic cream the surgery staff gave us to Ben’s nose that would soon have a ventilator placed inside his tiny nostrils and would help our son take his first breaths for the second time in his life.

We held each other and cried and prayed, and by 6:00 we were in the car headed to the hospital. The intake was smooth and the nurses busied themselves around me taking Ben’s blood pressure, temperature, quizzing me on his past feeding schedule to make sure his stomach was empty, and graciously allowing me to hold my sweet boy all the while. We waited several hours for the surgeon to be ready, since he had a late night emergency surgery the night before. We listened to worship music and just prayed. Prayed for peace, for steady hands, for sharp minds, for confident decisions, for smooth working machines that would be functioning to keep our son alive while his chest was still and being operated on.

Waiting for surgery. — Waiting for surgery | April 12, 2019

I will never forget the feeling of a rock in the pit of my stomach as I walked him to the operating room, each step was heavy, as my heart was torn to want to run away, but knowing that this procedure was necessary to see my son live. That is truly something that I cannot adequately describe. My heart desperate to give Ben a future, and terrified that the very procedure that promised life, would be the one to take it. The nurse that helped us through our intake walked along side me, pushing Ben’s bed. She squeezed my hand, and I looked up with tears streaming. I saw compassion mirrored on her face. Tears fell from her own eyes, and that level of commitment to her job, to feel my fear and wade into the weight of the day with me, is something I will always cherish. The OR nurses met us in the hall, and promised to take their best care and would be with him for the entire procedure. And they took him from my arms.

We cried as we walked back to the waiting room where we met my mom and Cody’s parents. A strange sense of peace settled over us as the procedure got underway. Shortly after it started, my sister who lived three hours away surprised us by coming to be with us. We chatted and watched the clock and sat by the phone waiting for updates. The surgeon completed the procedure in three hours and then during the echo after the procedure, decided he wanted to make an adjustment and moved forward with opening Ben’s chest again. Ben’s cardiologist who was watching the surgery came out to reassure us that Ben was doing well and that this small adjustment would be best for Ben.

After a total of 7 hours we got a text that Ben’s heart was beating again. He was doing well. Recovery from heart surgery is nothing to downplay, but we definitely rejoiced that the scariest part was behind us.

As we were nearing the one year anniversary, and I realized it would fall on Easter, I have been drawing on the experience of Ben’s heart surgery to learn new depths of what Easter means for us. The long and heavy walk I experienced as I took Ben to heart surgery, makes me feel a closeness to the heart of Jesus as he cried for the Lord to take the cup of death away from him. He knew the life that crucifixion would bring, but this human aspect of Jesus’s experience, to wish for another way. To cry out to the Father to make another way, is a prayer I have prayed far too often over the last year.

Stopping Ben’s heart so a surgeon could operate on it, was necessary to make it whole. Jesus willingly gave up his life to pay the penalty of sin, was necessary to make man whole. And finally, the relief and rejoicing that came in hearing that Ben’s heart was beating again on its own, is what we celebrate today with Easter.

Matthew 28:6 He is not here; he has risen, just as he said.

We rejoice that He has defeated death. I am resting in this simple truth: the Lord will use any means to draw me closer to Him, to trust in His promises and allow me to point to His goodness, even in fear or despair. For I have this great hope. That because He lives, I believe He will not leave me in my fear or despair or even death. He is risen. He is risen, indeed.