Scott and I got married in March of 2016. We had met in college at St. Cloud State University in 2010. We dated in college, long distance, dated in Canada, long distance again and finally ended up here in Minnesota for the long haul.
We both aspired to be parents and knew that was in our plan early on in our relationship. We had a quick engagement and were ready to start a family soon after the wedding. It didn’t take long to realize it wasn’t going to be as easy as we had hoped. Month after month we were disappointed when we got the negative result back and after a year of negatives we decided to see a fertility specialist. After a few months on fertility meds we were elated to discover we were pregnant!! We went in to see the heartbeat at 8 weeks and it was the sweetest little blip we had ever seen. We told our families and it was the best moments of our lives. Unfortunately our worlds came crashing down just 3 days later when I miscarried our precious baby. It was heartbreaking to call our family and tell them the bad news after a year and a half of trying to start a family.
After my body recovered I got the go ahead to start back on the fertility meds and again within a few months we were pregnant. This time we celebrated a little more hesitantly. We told family and friends right away knowing that they would be there for us if we needed them, they were all incredible!
To our surprise everything went perfectly with this pregnancy! With the exception of lots of nausea, unbelievable exhaustion and zero appetite, everything was going well. At 16 weeks, in front of family and friends we found out we were having a BOY!!! We bought a house and closed when I was 21 weeks (March 14th) and got the nursery set up right away.
At our 24 week ultrasound we were told that our little boy has a congenital heart defect. We would find out later that it is an AV canal defect that would would require open heart surgery. We were also told that he is measuring about a month behind and most likely has a fatal chromosomal abnormality (either trisomy 13 or trisomy 18). We ran a blood test and found out a week later that it neither of those. That was an incredibly hard week. I found out after he was born that he has a deletion of his 12th chromosome called 12q14. He is the 21st case every reported.
I was admitted to the hospital on June 4th at 32 weeks and 4 days for high risk pregnancy and Maxley came 8 days later. While I was admitted to the hospital, Scott became ill and passed away just 4 days before our sweet boy was born. He was diagnosed with Wegener’s disease, a very rare autoimmune disease but passed just 3 days later.
Maxley was born in June and we spent 99 days in the NICU/ ICC. We were home for 4 months and are now back in the hospital following Maxley’s open heart surgery in January. He is currently on life support fighting his failing lungs.
