Team Up to Help the Tobben Twins...Again
Donation protected
Meet Alexander and Josephine, our miracle babies! Imagine our surprise when we found out we were having twins...only to be followed up by a positive trisomy 21 test- Down Syndrome (surprise again)! But we saw those babies kicking and waving on the ultrasound and while there was concern for their health, we just loved them.
When I was 16 weeks along, we realized that one baby wasn’t growing. We knew that the baby that seemed healthy was a boy... we decided to name him Alexander, which means protector. Weeks later we found out our teeny tiny baby, was a girl. We decided to name her Josephine, which means ‘God will add a girl’. We asked our two year old, Eli, if her middle name should be Faith or Hope. He picked Faith. We’ve relied heavily on faith throughout this journey. Weeks later, we learned Josephine had a Dandy Walker malformation in her brain and that her small size was due to ‘intermittent absent end-diastolic flow’ from her umbilical cord to her placenta (the flow would pause intermittently which kept blood and nutrients from being delivered to her so she could grow). We learned that there may be a time when that flow would stop... and delivery would be immediate, or we would possibly have to decide if we should let her go if it was too soon for Alexander to survive.
It was a waiting game. Every week brought us a bit closer to our goal of 35 weeks!
At 29 weeks, I had a nosebleed that would not stop. I had two surgeries in 48 hours. I’d been on baby aspirin to prevent problems with the pregnancy and that aspirin was one of the reasons I couldn’t stop bleeding. The aspirin may also have been keeping blood flowing to Josephine. Both babies were monitored after my surgeries, and before I had a chance to even pack a bag and tell my students goodbye, we were told we had to deliver if we wanted to try and save our baby girl. That ‘intermittent’ flow had become ‘persistent’ (the flow was stopping with every heart beat).
Born at 29 weeks, Alexander (3 lbs 6 oz) and Josephine (1 lb 2 oz) came out fighting and crying and filled us with joy. Our warrior, Alexander, has struggled to breathe since he came out. He wasn’t used to fighting inside, but he’s fighting now! As it turns out, Josephine didn’t need a protector. Our tiny but mighty little girl has, in some ways, been stronger than her brother. She was fighting to stay alive inside me and being on the outside in an isolette attached to oxygen and monitors and IV’s etc. is actually easier for her. She’s showing all the babies in the NICU how a 1 lb 2 oz newborn with a hole in her heart can fight and survive and grow.
Since delivery, we’ve been overwhelmed by our community and the support and prayers. Keep praying for us! However, a very early delivery and many medical complications plus months in the NICU for two babies is very expensive. We planned and prepared the best we could, but could not have prepared for this. I also am recovering from a C-section, and I’m already using all my paid sick leave before the babies even come home! I will have a significant loss in wages. While Josephine may be in the hospital into the summer, Alexander will hopefully come home near his due date at the end of March. He will be like a newborn, could possibly still be on oxygen, and will need a parent at home with him. Both babies are going to need occupational and physical therapy. Josephine will likely need treatment or surgery for her VSD (hole in the membrane of her heart). She will need an unknown amount of support for her Down Syndrome and Dandy Walker. We have a long road ahead of us, but we STILL have faith!
We have decided to ask for financial help from the wonderful community that has supported us so far, and from anyone they share this with. Please share, and if you are able, donate to this fund for our miracle babies so we can pay off their medical expenses and cover our losses from my recovery and unpaid FMLA time. If you are not able to donate money, please continue to keep us in your prayers, and share this campaign.
Thank you so much!
Kate, Eric, Eli, Alexander, and Josephine
When I was 16 weeks along, we realized that one baby wasn’t growing. We knew that the baby that seemed healthy was a boy... we decided to name him Alexander, which means protector. Weeks later we found out our teeny tiny baby, was a girl. We decided to name her Josephine, which means ‘God will add a girl’. We asked our two year old, Eli, if her middle name should be Faith or Hope. He picked Faith. We’ve relied heavily on faith throughout this journey. Weeks later, we learned Josephine had a Dandy Walker malformation in her brain and that her small size was due to ‘intermittent absent end-diastolic flow’ from her umbilical cord to her placenta (the flow would pause intermittently which kept blood and nutrients from being delivered to her so she could grow). We learned that there may be a time when that flow would stop... and delivery would be immediate, or we would possibly have to decide if we should let her go if it was too soon for Alexander to survive.
It was a waiting game. Every week brought us a bit closer to our goal of 35 weeks!
At 29 weeks, I had a nosebleed that would not stop. I had two surgeries in 48 hours. I’d been on baby aspirin to prevent problems with the pregnancy and that aspirin was one of the reasons I couldn’t stop bleeding. The aspirin may also have been keeping blood flowing to Josephine. Both babies were monitored after my surgeries, and before I had a chance to even pack a bag and tell my students goodbye, we were told we had to deliver if we wanted to try and save our baby girl. That ‘intermittent’ flow had become ‘persistent’ (the flow was stopping with every heart beat).
Born at 29 weeks, Alexander (3 lbs 6 oz) and Josephine (1 lb 2 oz) came out fighting and crying and filled us with joy. Our warrior, Alexander, has struggled to breathe since he came out. He wasn’t used to fighting inside, but he’s fighting now! As it turns out, Josephine didn’t need a protector. Our tiny but mighty little girl has, in some ways, been stronger than her brother. She was fighting to stay alive inside me and being on the outside in an isolette attached to oxygen and monitors and IV’s etc. is actually easier for her. She’s showing all the babies in the NICU how a 1 lb 2 oz newborn with a hole in her heart can fight and survive and grow.
Since delivery, we’ve been overwhelmed by our community and the support and prayers. Keep praying for us! However, a very early delivery and many medical complications plus months in the NICU for two babies is very expensive. We planned and prepared the best we could, but could not have prepared for this. I also am recovering from a C-section, and I’m already using all my paid sick leave before the babies even come home! I will have a significant loss in wages. While Josephine may be in the hospital into the summer, Alexander will hopefully come home near his due date at the end of March. He will be like a newborn, could possibly still be on oxygen, and will need a parent at home with him. Both babies are going to need occupational and physical therapy. Josephine will likely need treatment or surgery for her VSD (hole in the membrane of her heart). She will need an unknown amount of support for her Down Syndrome and Dandy Walker. We have a long road ahead of us, but we STILL have faith!
We have decided to ask for financial help from the wonderful community that has supported us so far, and from anyone they share this with. Please share, and if you are able, donate to this fund for our miracle babies so we can pay off their medical expenses and cover our losses from my recovery and unpaid FMLA time. If you are not able to donate money, please continue to keep us in your prayers, and share this campaign.
Thank you so much!
Kate, Eric, Eli, Alexander, and Josephine
Organizer
Kate Manion Tobben
Organizer
Columbia, MO
