“If it’s meant to be, it will be. We’re leaving it up to God.” This was our motto when it came to deciding whether or not to expand our family from two kids to three.
Life is pretty easy with two, potty-trained, fairly independent kids. Each kid has their own room, it’s easier to get reservations for four, my cross-over SUV can easily manage two car seats, these were some of the reasons sticking with a two-kid family seemed like a good choice. However, having three was always something that appealed to us. Growing up in a family of six, it was always fun to have a sibling around – someone to play with, bother, or fight with. Deep in my heart I knew that I would always wonder what having three kids would be like. So what was in God’s plan for us…playing man-to-man or taking the plunge and playing a zone?
In all honesty, I always preferred playing zone defense. Learning and mastering the 1-3-1 in sixth grade basketball was actually one of my favorite learning moments in sports. In August, 2016 we learned that we would be moving to a zone…Baby Nelson # 3 would be arriving in April 2017. We were instantly surprised, somewhat nervous, but mostly excited about the future for our family.
We told the kids (who had been begging for a new baby) on September 30th. Next up we told our parents, siblings, friends, co-workers, and then the official Facebook announcement. We were plugging away at life, slowly starting to plan and think about life in the spring with three kids. Working in the medical field and being a self-admitted worrier, I have always been cautious about getting too excited or too attached until after the 20 week anatomy scan, even after having two ‘normal’, full-term pregnancies. For some reason I had this looming cloud surrounding me, telling me that our current life was too easy, too good to be true, reminding me that things could change in the blink of an eye. I tried to brush off those feelings and nervously hoped that December 5, 2016, the date of our anatomy scan, would be the day to clear that cloud of doubt.
December 5, 2016 will now be known as D-Day in our home. It was the day we received our diagnosis that our sweet, miracle, baby number three had a serious birth defect. I will never forget the relief I felt when we were ‘let go’ to the waiting room after our ultrasound, and the absolute terror and fear that instantly set back in when we were called back ten minutes later to ‘get some more pictures.’ I work in ultrasound so instantly my ‘sonographer detective instincts’ kicked in and I began to ask the sonographer questions that she couldn’t get around. After she got a few more images looking at the spine and stepped out to get our beloved OB, I tearfully looked at Spencer, shook my head, and said, “This isn’t good. Our baby probably has spina bifida.”
I was right…our child had been diagnosed with spina bifida. It looked like were dealing with a severe form of it, too. We would see a high risk OB (MFM) and due to the severity of our case we would be potential candidates for fetal surgery. The 48 hours that we waited to see the MFM were arguably the most difficult we’ve experienced to date. We tried not to google, scare ourselves with incorrect information or worse case scenarios, but let’s be honest, that is hard not to do.
I won’t get into the details of our worrying, the amount of Kleenex boxes we went through, or the hours of sleep we didn’t get. What I will get into are two things. The first being the difficult conversations Spencer and I had those first two days. We didn’t have to go there, but we knew that at some point we needed to know where we stood on some tough subjects. So we arrived at three things that would guide us through the remainder of our pregnancy and beyond. First, we are quality of life, not quantity of life people. We want to make decisions that will improve the quality of our baby’s life. Second, we have to make decisions that are the best for our entire family. We have two other children who are equally important in this process and they need a mom, too. Thirdly, we want to explore all of our options and truly make informed decisions to try and do what is best for this baby to give them the best shot we can at a full and happy life.
The second thing I want to get into was something I will NEVER forget. On D-Day we told Cade and Cambrie about our baby’s diagnosis, that our baby had spina bifida, will likely never walk, and will have a lot of challenges ahead. Being three and not really understanding much, Cambrie just got a sad look on her face, hugged me, and asked about one of her toys she was playing with. Cade, surprised me with how much he understood and how much he could put into perspective. He looked up at me with his big, powerful brown eyes and spoke two sentences that would change my outlook and stick with me forever. He said, “Mom, it’s okay to be different. Our baby is still going to be awesome.” I instantly started crying even more (I didn’t know that was possible at the time), gave him a hug, and told him how right and great he was.
The next few weeks were a whirlwind of appointments and planning. Our MFM in Lincoln confirmed the spina bifida diagnosis as severe and thought we would meet criteria for fetal surgery. He set us up for testing and consultations at Children’s Hospital in Colorado.
The week of Christmas Spencer and I drove out to Colorado. Immediately we had a fetal MRI, an OB ultrasound, fetal echocardiogram, and lots of meetings with physicians in Colorado. We even met with a genetic counselor who reviewed our amniocentesis results and conducted a very in depth interview. She confirmed that this was a very rare occurrence (less than 2%) that we’d have a child with this type of birth defect. After all of the testing, consults, and evaluations we found out that we did meet criteria for fetal surgery. They had set December 28th as our surgery date. If we decided to proceed with fetal surgery we would go home, have Christmas, and head back to Colorado for a 2+ week stay for surgery and follow up. The time frame was very short and quick as there is a small window to safely and effectively perform fetal surgery for spina bifida.
I thought the Colorado trip would be easy – if we met criteria we’d have the surgery. It wasn’t easy. Instead we felt more confused and took a few days to decide. After lots of prayer, pros and cons charts, and thought, we decided fetal surgery wasn’t the best decision for our baby and family. Fetal surgery can offer many great benefits and can improve outcomes, however it is a risky surgery for both mom and baby. The recovery is intense, there’s strict bed rest for the remainder of pregnancy, and the risk of early labor is very high and unpredictable. We found comfort in some Facebook support groups and all of the parents (both those who chose fetal surgery and those who had post natal repairs) all said there isn’t a wrong decision. They are all made out of love and what is best for you and your family, which is different for everyone.
So let’s fast forward to today, Sunday March 26th. We are about a week away from meeting our baby, a little girl. We will be having a scheduled C-section at Children’s Hospital and she will be having surgery to repair the defect on her spine within the first 24 hours. We ask for prayers and good thoughts for successful, safe, and complication-free surgeries and recoveries for the baby and I. We ask for knowledge, expertise, and compassion for doctors, nurses, and the healthcare providers that care for our family. Prayers that our daughter’s NICU stay goes well, and that we have lots of courage and strength to cope and navigate the future ahead of us are also appreciated.
We remain cautiously optimistic about our daughter’s future and know our family life will, from this point on, be different. But as the wise Cade Nelson once said, “It’s okay to be different.” I couldn’t agree more.