Aven's medical - Giant Omphalocele
Donation protected
Aven Ace B.
Born October 22, 2015 at 4:43am at the University of Iowa Childrens Hospital in Iowa City, Iowa.
Aven was born with the extremely rare condition know as Large Omphalocele. If the internet is correct around 4 million babies will be born in the US this year. Of which approximately 3,000 will be born with a an Omphalocele. This condition involves his liver and intestines to grow in a sac outside his normal core body. Imagine being born with a softball where your belly button is and your intestines and liver growing inside that. This prognosis normally involves other issues or birth defects. Fortunately it appears Aven has avoided those.
However, he is still a long ways from going home. He progressed really well for the first 10 days. But then after having his PIC line removed. He developed a blood infection known as Streptococcal Varius. I guess this can be lethal and he was immediately put on antibiotics. This lasted for 7 days and no milk. All he received were the nutrients thru a new PIC line. We now are reintroducing him to mommys milk slowly and volume controlled. Hopefully tomorrow he can eat as much and often as he wants.
We are still waiting for the skin to develop and heal overthe sac . The long term prognosis, while good, its extremely long. They told us in the beginning that Aven could be here in the hospital for 3 months. It will be at least 1.5 months and possibly 2 it appears. Once the sac heals over and hardens with normal skin. He will then be allowed to go home. Provided no other complications arise. Then with regular and routine check ups the plan will be to let him grow and in 1-2 years a surgery will be performed to gently slide/push everything back inside of him and use the skin from the sac to close his stomach off. We are told its basically a form of hernia surgery at this point. But Aven will never have a belly button.
Krista (mommy) delivered Aven by c-section to make sure there was room for Aven to come into this world and not disrupt the sac. She lost a lot of blood and required 2 blood transfusions. She ended up having complications with whats known as Postpartum Preeclampsia. This is quite rare...about 600 women a year are diagnosed with it. This also can be life threatening and she was immediately sent back to labor and delivery and put on medication. 7 days after giving birth she was finally well enough to be released.
We have our 16 year old at home, Ashton, whos done a great job balancing home, school, club soccer, work, coming over to see Aven when shes able, AND helping to take care of her little brother Axel, whos 3. Axel has had to do some adjusting as he bounces around with family members for a few days at a time trying to help us out . There isnt much for a 3 year old to do in a hospital on a daily basis all day long.
What any kind donations would be used for are the obvious ones to start. Medical bills. Gas as home is 110 miles away. So there is a lot of travelling back and forth for Krista and I taking turns. As well as the hotel we are staying at here in Iowa City. Just wish it had a kitchen. All meals come from eating out, hospital cafeteria, or a microwave.
We also have created a Facebook page that we give daily updates and pictures to. It can be found at Avens Journey.
Http://m.facebook.com/Avens-journey-889219631161448/
Thank you for taking the time to read our story.
Allan
Born October 22, 2015 at 4:43am at the University of Iowa Childrens Hospital in Iowa City, Iowa.
Aven was born with the extremely rare condition know as Large Omphalocele. If the internet is correct around 4 million babies will be born in the US this year. Of which approximately 3,000 will be born with a an Omphalocele. This condition involves his liver and intestines to grow in a sac outside his normal core body. Imagine being born with a softball where your belly button is and your intestines and liver growing inside that. This prognosis normally involves other issues or birth defects. Fortunately it appears Aven has avoided those.
However, he is still a long ways from going home. He progressed really well for the first 10 days. But then after having his PIC line removed. He developed a blood infection known as Streptococcal Varius. I guess this can be lethal and he was immediately put on antibiotics. This lasted for 7 days and no milk. All he received were the nutrients thru a new PIC line. We now are reintroducing him to mommys milk slowly and volume controlled. Hopefully tomorrow he can eat as much and often as he wants.
We are still waiting for the skin to develop and heal overthe sac . The long term prognosis, while good, its extremely long. They told us in the beginning that Aven could be here in the hospital for 3 months. It will be at least 1.5 months and possibly 2 it appears. Once the sac heals over and hardens with normal skin. He will then be allowed to go home. Provided no other complications arise. Then with regular and routine check ups the plan will be to let him grow and in 1-2 years a surgery will be performed to gently slide/push everything back inside of him and use the skin from the sac to close his stomach off. We are told its basically a form of hernia surgery at this point. But Aven will never have a belly button.
Krista (mommy) delivered Aven by c-section to make sure there was room for Aven to come into this world and not disrupt the sac. She lost a lot of blood and required 2 blood transfusions. She ended up having complications with whats known as Postpartum Preeclampsia. This is quite rare...about 600 women a year are diagnosed with it. This also can be life threatening and she was immediately sent back to labor and delivery and put on medication. 7 days after giving birth she was finally well enough to be released.
We have our 16 year old at home, Ashton, whos done a great job balancing home, school, club soccer, work, coming over to see Aven when shes able, AND helping to take care of her little brother Axel, whos 3. Axel has had to do some adjusting as he bounces around with family members for a few days at a time trying to help us out . There isnt much for a 3 year old to do in a hospital on a daily basis all day long.
What any kind donations would be used for are the obvious ones to start. Medical bills. Gas as home is 110 miles away. So there is a lot of travelling back and forth for Krista and I taking turns. As well as the hotel we are staying at here in Iowa City. Just wish it had a kitchen. All meals come from eating out, hospital cafeteria, or a microwave.
We also have created a Facebook page that we give daily updates and pictures to. It can be found at Avens Journey.
Http://m.facebook.com/Avens-journey-889219631161448/
Thank you for taking the time to read our story.
Allan
Organizer
Allan Boehmer
Organizer
Ankeny, IA