Miracle baby!

2020 has been a hard year for everyone with the pandemic and restrictions. Late march we found out we were pregnant and we were also in the process of packing our stuff to move into our new home! So april came and we moved into our new home and started unpacking. We were so excited to start this new chapter in our life! A week after we moved in, I went into the ER because something wasn't right with my pregnancy. Turns out, we were having a miscarriage- we were devastated. eventually we picked ourselves up and tried to moved on. Things started getting better. A few weeks later we found out (unexpectedly) that we were pregnant again.. we were shocked and terrified- not ready to be pregnant again. Fast forward, all of our appointments were going great. Baby was growing normally, heart rate was good, all seemed well. In august, we went for our 20 week ultrasound, we were finally going to see our baby and find out what we were having. We are having a BOY! We could not be more excited, and started thinking of names right away! But, a few days later, we got the worst news… They found abnormalities in his scan- my doctor said that his lower jaw looked small and that he had a cyst in the back of his head. They scheduled us for the first available detailed ultrasound so they could take a closer look. During this scan, they found our that our baby boy had a medium/large (fluid filled) cyst in the back of his skull that former instead of his cerebellum vermus (a part that connects the two hemispheres of the brain), an underdeveloped lower jaw, and they also found a heart defect called double outlet right ventricle (hole in the middle wall of his heart, an underdeveloped pulmonary artery and both of his arteries are on one side of his heart instead of one on each side), next the doctors wanted a sample of amniotic fluid to test for chromosome abnormalities, so we had an amniotesis done. We waited a couple weeks for results- nervous for the outcome because of all the possibilities. We finally got a call with our results and found out that our baby had a rare (no cases ever reported) chromosome abnormality with his 3rd AND 4th chromosome. He is missing a piece of one chromosome, and has an extra piece of his other chromosome- since they are not complete, it is called an imbalanced translocation. We also found out through more blood work that this is a result of me having what is called a balanced translocation with my 3rd and 4th chromosome. So part of my 3rd and 4th chromosomes are swapped but complete chromosomes. The genetic counselor said that there have been no cases reported of either mine or baby boy's chromosome abnormality- there have been cases reported of one or the other chromosome abnormality but never both, so baby and I are the first.

Fast forward- we have appts with different doctors, specialists and genetic counselors every month and then every couple weeks. Long story short, we find out that other than the abnormalities, everything else with baby is checking out. But with that being said, they aren't exactly sure what to expect once he is born since he is the first with his chromosomes. The one thing they are sure about is that once he is born, he will be placed in the cardiac NICU to prep for heart surgery (at one week old) and won't be coming home until he recovers from surgery at around a month old (this is also not the only surgery he will have- he will need heart surgeries for the rest of his life). They will be monitoring him closely to make sure his jaw doesn't effect his ability to eat or breath on his own. 

I am making this go fund me because we are unsure of what is yet to come once our son is born but we do know we have a lot of decisions to make and will have to be out of work for a bit after having him and once he has his first surgery. we will be driving back and forth between our home in chaska and abbott in minneapolis everyday to visit him. we will be out of work for a bit of time, and still needing to pay bills and daycare and gas to get to and from the hospital, food to eat, etc… Thank you for taking the time to reads this, and please keep us all in your prayers.!