Over the next few weeks we settled into life as a family of five. We learned how to best care for his colostomy and Jakob was growing well. We celebrated Thanksgiving, Christmas and the New Year. 2021 was proving to be a good start for our family. We were healthy and growing!
In late January we set Monday, February 22 as Jakob’s surgery date. Setting the date set off a rollercoaster of emotions. With his first surgery, I didn’t have time to think. We were managing by crisis. Even looking back at Addy’s surgery in September—I didn’t comprehend how invasive it would be. I just felt it was a step towards healing.
In sharp contrast, I had a very good sense of what to expect with Jakob’s surgery. And it scared me to death. I imagined all of the ways it could go wrong, all of the things that could happen, all the challenges we could face. My heart was breaking and my anxiety was rising.
On the night before surgery, however, our family was calm. Ana and Addy went to Brad’s parents’ house for the night and they were happy and peaceful.
Their smooth transition helped calm my nerves. The next morning, we headed to Children’s Hospital of Philadelphia (CHOP). We arrived early, completed Jakob’s rapid COVID test and we were quickly prepared for Jakob to be taken for pre-op at any moment.
God had a different plan. After hours of waiting, our surgeon, Dr. Nace, stopped by. The day was getting long and he felt, for Jakob’s benefit, that it would be best if we waited. He wanted his team to be fresh, so they could do their very best job for Jakob. We were disappointed, but thankful that Jakob was already admitted to the hospital and we didn’t need to drive home for the night.
Tuesday morning, Dr. Nace talked us through the procedure, which brought me incredible peace. Finally, after months of worry and uncertainty, I felt peace that everything was going to be OK.
Jakob headed for surgery and Brad and I headed to Starbucks. We needed some time to decompress, as we waited.
After nearly six hours, Jakob’s surgery was complete. Dr. Nace told us that he was thankfully able to complete the surgery laparoscopically, which meant Jakob’s recovery time would be faster.
Late that evening Brad headed home so he could see Ana and Addy on Wednesday morning.
For the next 36 hours, Jakob slept. It was such a blessing; he wasn’t allowed to eat for while after his surgery, so we were imagining a tough time with a “hangry” little boy. His body, though, knew what to do. He rested and slept. I rested and slept too. It was fabulous.
On Thursday I was able to start nursing again and Jakob was thrilled. Several hours later though, Jakob began to cry, as if in pain, every time we changed his diaper. After bringing it up several times, the medical team finally agreed with me that his catheter was causing significant discomfort, and on thursday evening, 48 hours post-op, the nurse practitioner removed the catheter and he was immediately content. He ate well and was passing stool and urine, normally.
It was a miracle.
God’s grace and healing for Jakob’s little body was a miracle.
On Friday morning the doctor told us Jakob had met all of his goals—48 hours early. We were going home!
When we arrived home, Ana and Addy were enjoying wonderful overnight plans with Uncle Jeff and Aunt Denise’s house, and so we were able to have a night at home with Jakob to settle in and to give him our full attention. We were so thankful to be all together on Saturday and the girls were thrilled to see baby brother!
Children with Hirschsprung Disease who have had corrective surgery typically get an incredibly severe case of diaper rash in the first weeks post-op. We were determined that Jakob’s story would be different, so we regularly changed his diaper—up to 5 times in 30 minutes (we went through almost 300 diapers in 3 weeks)! We supplemented clean diapers with generous applications of a blend that included Desitin. The result? His diaper rash was uncomfortable, but manageable.
Three weeks post-op, Jakob began to vomit and we quickly whisked him back to CHOP for observation. After several hours they sent us home, convinced it was a stomach bug. A week later we were back, with more vomiting. Because his surgery was in his intestinal tract, the doctors wanted to be certain the vomiting wasn’t a result of a bigger problem. This time we stayed a couple of days, just for observation. We were assured, however, that he was healing fine and growing well.
We are now almost 6 weeks post-op, we were on top of the world!
Jakob has started solid foods and is doing fabulously! He’s growing fast, he’s content and the doctor is super pleased with his progress.
By the grace of God, Addy has reached 10 months of being seizure free. We look forward to May 2022, when, God-willing, we will begin to wean her from her seizure medications.
We feel confident that our story with CHOP is nearly complete. While the door is still open to CHOP, it’s closing a bit more each day.
As I reflect on the last 18 months, I am thankful for the ways God shaped me and the lessons He taught me. I am thankful for the people who walked the journey with us—providing childcare, meals and generous gifts.
While I am thankful, I wish I could have learned the lessons and experienced the community without my children needing to endure the pain and suffering. In the suffering, though, I found hope and peace, knowing that God is carrying us in His hand (or reference back to the verse that brought you comfort).
We rest, knowing that God is carrying us through this journey toward healing.
There is a time for everything, and a season for every activity under the heavens: a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to laugh, a time to mourn and a time to dance, a time to scatter stones and a time to gather them, a time to embrace and a time to refrain from embracing, a time to search and a time to give up, a time to keep and a time to throw away, a time to tear and a time to mend, a time to be silent and a time to speak, a time to love and a time to hate, a time for war and a time for peace.
Ecclesiastes 3:1-8
An Unexpected Journey – Part 1 – And so it Begins – Read Here
An Unexpected Journey – Part 2 – Some Answers – Read Here
An Unexpected Journey – Part 3 – Hope – Read Here
An Unexpected Journey – Part 4 – What Are We Doing? – Read Here
An Unexpected Journey – Part 5 – Read Here
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