We had found out months before that Soren would face some problems. Without going into too much detail, Soren had been diagnosed with
something called hydrocephalus, in utero. It was later re-diagnosed to include something called Dandy-Walker syndrome. The good doctors did their best to re-assure us, and let us know that most often babies that are diagnosed early can be fairly well treated. We all spent months watching and praying, and realizing that Soren's condition inside Stephanie was not improving, but remained hopeful and prayerful that God would work us a miracle. When Mr. Soren joined us, he hit the ground doing amazingly well and with seemingly no difficulties whatsoever. For a few hours, we thought that God had answered our prayer.
Just before mom and dad and new son were ready to go back to the room, Soren stopped breathing and we all made the trip to the Neonatal Intensive Care Unit- the NICU. We hoped that Soren just needed a little regulating and some early help, and all things would return to normal.
For several days, the little fella went through all kinds of testing- you name it... blood tests, x-rays, CTScans, eye exams- whatever the good doctors could think of. On the 24th, the docs believed they could see in the images that Soren didn't have hydrocephalus or Dandy-Walker, but something incredibly rare called Lissencephaly. The problem was that all of the the hundreds of blood tests that should have confirmed the diagnosis from his brain images came back negative. We were told that we were in "uncharted waters." That's not a great feeling.
After about six weeks in the NICU, we were able to get in touch with the expert on lissencephaly out of the University of Chicago. After he took a look at everything, we were informed that little Soren was very likely the 20th child, internationally, to be diagnosed with a freakishly rare thing called "lissencephaly with cortical changes- group C." The reason no body knew about it was obvious- and in all of the scientific literature out there- exactly one paragraph had been written about it... mostly as a side note. Almost a year and a half after that news, we received additional information from the University of Chica
go that Mr. Soren was in even rarer company- He was one of three children ever found to have the specific genetic "misspelling" in his DNA to cause the darn thing.
Stephanie and I spent about seven weeks in the NICU with Soren. We saw truly amazing things happen in there. What we realized is that God did give us a miracle- and that he had different and better plans- even if we didn't agree with them. He did answer our prayers- they just weren't always the ones that we really hoped he'd answer. God sustained us, he blessed us, and he gave us 51 of the most incredible days with our little boy. We were able to spend more hours than any parent ever has with their newborn in 51 days. We saw God's army organize, we saw His power through prayer and through the goodness of others. We literally had God answer our very specific prayers within an hour at times. We received His grace and could see God glorified through all that had happened- and we both can say that we have been so incredibly blessed through it all.
Soren had little question mark ears, and macaroni pinkies.
He had sandy brown hair the color of Stephanie's and had perfected the open-mouth breathing technique. We got the most fun out of bath time with the little guy. He'd wake up and scream, and smile just a little. Stephanie and I would go back to the Ronald McDonald house la
te at night and struggle to even want to wash our shirts because we were so excited about the drool marks from our son across our shoulders. Soren is truly amazing to us- and perfect in every sense of the word for his mom and dad. We have felt so fortunate that we were chosen to be his parents.
Soren's care-givers were amazing. They made him their own son. Becky and Patty and Terri sang to him and rocked him and held him for all they were worth. His other nurses did the same, and Dr. DeMarie treated him better than any other baby in the place. His care was phenomenal-
We were able to bring Soren home on November 8th, and had him at home for a little over 36 hours. We are so thankful that he was able to leave his impression on our home and our lives. Mr. Soren is dancing now- and better than he ever could have here. He left a few hand-me-downs for his little brother and taught his parents all kinds of things. God has been good to us-
Soren would be two years old today. We hope and plan to make September 21- Soren's Day- special every year. Last year we were able to share the news with our friends and family that Soren was going to have a little brother. This year, Stephanie and I spent the day making memory boxes to take back down to the NICU- for families in circumstances similar to ours. We hope that Soren's day can be a day to serve, to remember our little guy, and a day to be thankful and to glorify our God. We hope it can be for you too.