Hello Neighbors,

We are so happy to be in this wonderful and caring community. We are Mark and Micheale Grotberg, our Children are Jessica Stormo (Andy) and Rian (Megan) Grotberg and Blake who left us in 2019. Many people knew Blake. He was so outgoing, loved to dance, and loved having a good time with friends. He loved being outside, playing with the dogs, throwing balls, playing horseshoes with friends and just plain getting dirty. He was so happy and was always excited to get company.  He made many friends in the community as well as introducing us to a new world filled with more kindness and caring than we could fathom.

Trying to figure out a way to start this article, the story Welcome to Holland repeatedly came to mind. It was given to us not long after Blake was born. It is a poem about expecting one journey only to be confronted with a completely different one. Our pregnancy went very smoothly. I even worked a full shift that sunny 70 plus degree October day. Shortly after Blake was born the pediatrician came in and told us that he was turning blue during his bath and that they suspected a heart issue. That is what lead us to Fargo via life flight at only a few hours old. We had to drive so he was already in Fargo getting a cardiac work up when we arrived. The pediatric cardiologist told us that he had a congenital heart defect called a complete atrioventricular canal. They kept saying that it was surgically fixable but there was more they needed to discuss. That was when they told us they suspected he had Down syndrome because 80% of the people with the complete AV canal have Down syndrome as well. That is what welcomed us to Holland. 

The doctors told us he would have to stay in the NICU until he was stable and strong enough for surgery. They got in contact with the hospital social worker who immediately got us a room at the Ronald McDonald house so we could be nearby. This first stay at the house was over 5 weeks. They provided a warm place to sleep and to have some time away from the hospital. They also provided unlimited food and drinks as well as a family room where we met other families that had sick children. Blake was life-flighted to St. Mary’s at Mayo when he was almost 6 weeks old. The Ronald McDonald house was full at the time, so we stayed in a hotel that was almost 10 miles away. Blake was having unexplained fevers on and off and he was developing complications, so the first surgery was a few days after arriving at Mayo. That is when they repaired his valve and reconstructed the defect. But 2 days later he popped the stitches they had to go back in. A few days after, that the valve they repaired showed not to be sufficient, so they had to put in a mechanical valve. That 10 miles was heartbreaking and torturous every time they called us in for emergencies. We soon got a room at the Ronald McDonald house in Rochester which was less than a block away. The social worker there had met with us as well and she applied for Spare Key funding. It is a Minnesota foundation that makes house payments for those who have a child in the NICU or PICU for more than 3 weeks. That was a huge relief as I was staying near him while Mark and Blake’s brother Rian drove back and forth on weekends. We only had one income and Rian was in school. We were in the hospital through the holidays. When we woke up Christmas morning there were so many presents for Rian outside of our room, it was so unexpected. But greatly appreciated by all of us and made Rian feel included.

Blake spent the first 4 and a half months in the hospital before coming home for the first time. Much of that time we stayed at the 2 Ronald McDonald houses. Blake had many medical needs when we first brought him home. He was on a feeding tube and many medications. Early childhood special ED, physical therapy, and speech therapy would come to the house. He never became verbal but did learn some sign language and used an Ipad for his voice. His speech teacher helped with getting the Ipad as well as the voice program which is costly. At age 9 he outgrew his valve and had to have it replaced. That surgery went as planned and we were back home in five days. 

In the summer of 2018, Blake was diagnosed with bacterial endocarditis, an infection of the heart valve. We spent 6 weeks with a PICC line with antibiotics running all day. It was found that the valve was still infected as the bacteria encapsulated itself, so the only option was to replace the infected valve.  His surgery was in February of 2019 to replace the valve. We were at Childrens Hospital in the cities, and I slept in the room with him as they have couches in the room. My husband and Rian stayed in town with a family friend and would come to the hospital during the day. Three days after his surgery Blake had a massive myocardial infarction and coded. They did CPR and hooked him up to and ECMO machine which is basically an external heart pump that is in the room itself. It was found that during the surgery the aortic valve was cut with the suturing needle causing the heart attack. The surgeons performed a few more procedures to try to help him and they all failed. His heart had too much damage. He did not qualify for a transplant due to his disability, that criteria has since changed.  During the time he was at Childrens, Ronald McDonald House chose families based on the intensity of care, so we were offered a room there. Even when we were not in the House, they provided evening meals made by volunteers, many who had utilized Ronald McDonald house as well. 

Unfortunately, Blake passed away February 27, 2019. The social worker connected us to Wishes and More, another Minnesota based foundation who donated money towards his funeral service.