Support Baby Skylar's Gastroschisis
Donation protected
First off, I would like to say thank you for taking your time to read and acknowledge our fundraiser for our baby boy! We are very excited to be new parents and we know we have a long road ahead of us, but with your support we can make it! I know you're probably wondering what gastroschisis is and why we are asking for money.
What it is:
Our little guy has a rare birth defect that effects about one in 5,000 births. Gastroschisis is where the large intestine (or other organs) are formed on the outside of the baby’s belly due to a hole in the abdominal wall.
The opening is on the right side of his belly button and is less than 2 inches in size. The intestine is unprotected and will be irritated, swollen or damaged when he is born. About 10 percent of babies born with gastroschisis also have a part of the intestine that does not develop correctly.
Most babies with gastroschisis do not have any other birth defects. There is no known cause of gastroschisis and does not appear to be inherited or "run in families." His survival rate is 75%-95%.
When he is born:
We are having a planned C-section at 36 weeks (when his lungs are developed) at Swedish Hospital in Seattle and then he will be transported to Children’s Hospital.
The timing of his surgery to put his intestines back in the abdominal cavity will depend on his condition after birth. If there is not enough space inside his belly to put the intestines back in they will wait. Most of the time, the surgeon can stretch the belly, fit all of the intestines inside, sew the hole closed, and make a new belly button. Sometimes the surgeon will place the intestines in a plastic bag to help protect them and keep them warm until they are put back through the hole into the belly.
He will go to the NICU to be stabilized and unfortunately won’t go home with mom and dad for a long while. He will need an IV (intravenous) line, a tube that goes into a vein to give fluids and possibly a breathing machine (ventilator) to help his lungs. Also he is VERY high risk of developing a blockage of the intestine (intestinal atresia), needing more surgery to correct the problem.
He could be in the hospital anywhere from 3 months to worst case 8 months. After surgery that is where the hard part begins, trying to recover his intestines fully so that he can be removed from the feeding tube will be the hardest struggle.
What this means for us as a family:
Our little man has a long road of recovery ahead of him. It makes us very emotional to think about the pain he will endure and the feeling of helplessness we will have as new parents. Also, all of the precious moments we will miss while he is in the hospital and the time missed bonding since we won’t be able to cuddle him until he is almost a month old. But, Dylan and I know that there are other parents out there going through this. We are trying to stay positive and not be scared for him. For now we are taking it one step at a time and trying to enjoy this pregnancy by not questioning his survival. We trust in the powers at hand and remind ourselves these challenges are given to those who are strong. Our baby boy is already teaching us so much about the strength and love it takes to be a parents.
How you can help:
During this time we need your help and support to see us through this crisis. As our baby will be in Seattle Children's Critical Care Unit for many months, this will be huge expense. Having to commute to Seattle, pay for meals, sleeping arrangements, and other costs will not be easy. As you many know, Dylan is a new business owner and this will be a stressful to be away from his baby. Anything your can do to help would be appreciated!
If you would like to help in other ways- transportation, making meals, or even just being with us in this time of need, please contact us! Any help will be appreciated!
What it is:
Our little guy has a rare birth defect that effects about one in 5,000 births. Gastroschisis is where the large intestine (or other organs) are formed on the outside of the baby’s belly due to a hole in the abdominal wall.
The opening is on the right side of his belly button and is less than 2 inches in size. The intestine is unprotected and will be irritated, swollen or damaged when he is born. About 10 percent of babies born with gastroschisis also have a part of the intestine that does not develop correctly.
Most babies with gastroschisis do not have any other birth defects. There is no known cause of gastroschisis and does not appear to be inherited or "run in families." His survival rate is 75%-95%.
When he is born:
We are having a planned C-section at 36 weeks (when his lungs are developed) at Swedish Hospital in Seattle and then he will be transported to Children’s Hospital.
The timing of his surgery to put his intestines back in the abdominal cavity will depend on his condition after birth. If there is not enough space inside his belly to put the intestines back in they will wait. Most of the time, the surgeon can stretch the belly, fit all of the intestines inside, sew the hole closed, and make a new belly button. Sometimes the surgeon will place the intestines in a plastic bag to help protect them and keep them warm until they are put back through the hole into the belly.
He will go to the NICU to be stabilized and unfortunately won’t go home with mom and dad for a long while. He will need an IV (intravenous) line, a tube that goes into a vein to give fluids and possibly a breathing machine (ventilator) to help his lungs. Also he is VERY high risk of developing a blockage of the intestine (intestinal atresia), needing more surgery to correct the problem.
He could be in the hospital anywhere from 3 months to worst case 8 months. After surgery that is where the hard part begins, trying to recover his intestines fully so that he can be removed from the feeding tube will be the hardest struggle.
What this means for us as a family:
Our little man has a long road of recovery ahead of him. It makes us very emotional to think about the pain he will endure and the feeling of helplessness we will have as new parents. Also, all of the precious moments we will miss while he is in the hospital and the time missed bonding since we won’t be able to cuddle him until he is almost a month old. But, Dylan and I know that there are other parents out there going through this. We are trying to stay positive and not be scared for him. For now we are taking it one step at a time and trying to enjoy this pregnancy by not questioning his survival. We trust in the powers at hand and remind ourselves these challenges are given to those who are strong. Our baby boy is already teaching us so much about the strength and love it takes to be a parents.
How you can help:
During this time we need your help and support to see us through this crisis. As our baby will be in Seattle Children's Critical Care Unit for many months, this will be huge expense. Having to commute to Seattle, pay for meals, sleeping arrangements, and other costs will not be easy. As you many know, Dylan is a new business owner and this will be a stressful to be away from his baby. Anything your can do to help would be appreciated!
If you would like to help in other ways- transportation, making meals, or even just being with us in this time of need, please contact us! Any help will be appreciated!
Organizer
Courtney Gwin
Organizer
Lake Stevens, WA