We sat in the NICU waiting room at Children’s Mercy hospital while our 18 hour old son was being operated on.
We prayed. And prayed. And prayed.
Throughout this time we had been in touch with Mama A keeping her updated. She was discharged from the hospital that morning and a friend was driving her to Kansas City to be with us.
Every half hour we’d get an update. The surgery was going well. Better than expected. Almost done.
After 2 hours the surgeon came out and said the procedure went beautifully. Almost immediately his oxygen stats had drastically improved and they were confident this would stabilize him enough for the open heart surgery he needed.
About an hour later we were brought to the 3rd floor PICU where Lowen had his own suite. We were so relieved to see him and yet frightened by all the things he was hooked up to. This wasn’t some minor medical issue we were dealing with. This was intense.
PICU room 32 would become our home away from home the next few weeks. We sat around as doctors and nurses came in to check on him and around 5pm Mama A arrived. It was so good for her to see Lowen and see that he was in good hands. We spent the evening in his room and around 8pm we all decided we were exhausted and needed a good night’s sleep.
The hospital had gotten Mama A a hotel room too, so we brought her to her hotel and then made the way to ours. We were all in bed by 10pm and slept a glorious 10 hours. We slept so good and woke up so restored. Truly an answer to prayer!
After grabbing some breakfast we picked up Mama A from her hotel and headed back to the hospital. We spent the day getting updates from Lowen’s team, meeting with social workers, and spending time with Mama A. At about 5pm she left to go back to Wichita. It was hard to say goodbye but we promised we would see her again before we went back to Michigan. We promised we wouldn’t leave Lowen’s side. We promised we would give him all our love for all his life.
The next few days were a blur. We started to understand Lowen’s condition more. He had a congenital heart defect- Transposition of the Greater Arteries (TGA). His two main heart arteries grew straight where they’re actually supposed to twist. This would require open heart surgery. As the cardiologist explained- without fixing it, it’s fatal. After it’s fixed- he will live a perfectly normal life with yearly cardiologist visits.
As the days blurred less and less together and we got our bearings, we became so thankful to be in such an amazing place. The care, the support, the love- all of it was amazing. The nurses and doctors were phenomenal. They took care of not just Lowen, but us, so well.
On Tuesday, four days after birth, Mama A relinquished her parental rights. As much as it was a celebration for us, our hearts ached for her. Her baby, her blood, was still in critical condition and she was entrusting him to us. It was our greatest honor and her deepest grief. Adoption is beautiful and life giving but it is also tender and filled with loss. She will forever be the bravest, strongest, fiercest woman we’ve ever known and we’re SO grateful for an open relationship with her.
Saturday through Thursday the goal for Lowen was to stabilize, heal, and get strong after the first surgery so that he could have open heart surgery Friday, March 19.
On Friday morning we got to the hospital bright and early. His nurse that morning, one of our favorites, Jill, got her team of nurses together and made special accommodations for us to hold Lowen for the first time. It was quite the task getting him into our arms with all his equipment, but as soon as I felt his little body against mine, I melted.
I was holding our son.
I sat there for an hour holding him and staring at him. His tiny nose. His porcelain skin. The sounds of the hospital fading into the background as I prayed over his tiny body. It was a mothers greatest joy- to hold her son for the first time- and worst nightmare- knowing he’d be having open heart surgery in less than an hour.
Greg was able to hold him after me.
At 8am we had to hand him back over so they could prep him for surgery. We were told all the possible risks. We were told the recovery would be long. We were told this was a super intricate surgery. It would be about 6 hours long. And then we said goodbye to our son.
On Friday, March 19 at 9am Lowen had open heart surgery at one week old.
At 4pm the surgeon came out to tell us surgery was done and had gone beautifully- better than he expected. We let out a huge sigh of relief. His little heart was fixed.
It was going to be an hour or so before we could see him.
When the time came, we went back to room 32 and found our babe resting peacefully. He looked rough. He was puffy. He had a large bandage on his tiny body and had drainage tubes coming from his chest. But the worst was behind us.
We spent the evening in his room and called it an early night as we were emotionally spent.
The next few days of recovery were going beautifully…until Wednesday, 5 days after surgery. Lowen’s heart started to beat out of rhythm. We were warned this could happen but it was rather rare. As his heart adjusted to it’s new ‘construction’ it had the potential to hit some roadblocks.
His doctors tried many different med combos. With each med ‘switch’ we’d have to wait 24-48 hours to see if it worked. This became a long and laborious process which set our timeline to discharge back significantly. About a week and a half into recovery, Lowen’s heart went into a strange rhythm that required them to shock his heart. We were in the room when they did this and it was awful. I never want to experience that again! Not only did they do it once, they had to do it three times before it worked.
Over the next few days they had to shock his heart 3 more times. Each time I prayed it would be the last. A flurry of doctors and nurses would come in. Everyone would back away from the bassinet. The room would grow eerily quiet, and then someone would push the button to deliver the shock while doctors (and us) stood on pins and needles watching the screens to see if his heart went back to normal rhythm. The time it worked, arms went up and cheers filled the room as if we were watching the final moments of a sports game and our team had just won.
After about 2 weeks post surgery his heart rhythm was finally managed with medications. They were hoping it would only take 2, but it took 3 plus some blood pressure meds- making 5 total. We were now 3 weeks into our stay at Children’s Mercy and we had been in the PICU the entire time.
As we entered the fourth week, we were finally told we’d be able to transfer to the main floor. What a glorious day this was!
It was also a bit scary as we were used to having a nurse in his room 24/7. Now a nurse would check in every 2 hours or so and we were more of the ‘caregivers’. While on the main floor we were given a ton of training, education, and hands on experience caring for him so we would be well prepared for discharge.
Finally, 5 weeks after birth, we were discharged from Children’s Mercy hospital. It was thrilling and terrifying!
We had to stay in Kansas City for a few more days as we had to wait for adoption paperwork to clear for us to travel- even though five weeks had passed, they couldn’t start this paperwork until we were discharged- frustrating!
It was nice to have a few days alone as a family of three. No doctors. No nurses. Just us.
On the day before we were scheduled to fly home, Mama A came to visit.
Nothing prepared me for that moment. To see her, holding her son for the first time, knowing she would hand him back to us. I tried to hold back the tears. It was gut wrenching in the most selfless love kind of way.
We said our goodbyes and the next morning we flew home. It was SO good to be home.
Our expected-to-be-quick trip, birth, and adoption turned into quite the adventure. An adventure we never expected but an adventure that God carried us through.
There are so many God stories, so many more details and things to share- but for the sake of time- we end here.
Our birth story, in three parts, with the love of our life healthy and home!
(Stay tuned for a follow up post as to where we are now and how Lowen is doing.)