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Thank you for visiting Evey's GoFundMe account. Evey's parents have given up a lot to be by her side every chance they get and have had to cut back work hours to do so. This account was set up to give some financial support to our friends and their family while they care for their sweet baby girl and two sons, ages 7 & 9.
From Amber, Evey's mom:
For those of you that are not caught up or are confused by Evey's long complicated medical history I wanted to share with you a comprehensive overview of the past few months.
On 6/4/15 I went to the follow-up ultrasound at my obgyn because at 24 weeks Evey was found to have a right-sided aortic arch (rare anatomical variant in the heart in which the aortic arch is on the right side rather than on the left) At this point I was 32 weeks pregnant. We were told that our baby had a severe defect. Evey's CDH was found to be on the right side and was presented to us as severe. We were told liver and kidney were up in her chest cavity pressing up on her right lung and pushing her heart and left lung to the left. I was also suffering from polyhydramnios (excess amniotic fluid) because baby Evey was having a tough time swallowing. I was so uncomfortable!! The docs also told me that with the excess fluid I could go into labor early which would make her survival rate even lower. We were so devastated and scared. My husband Stevie even had to stop preparing the baby's room because we didn't know if we would ever be bringing her home. Over the next 7 weeks we met with surgical teams, Neonatologists, and toured NICUs at two different hospitals. I went to appointments 2x a week for nonstress tests and ultrasounds. We had a fetal MRI which showed some lung on the left but we're not given any statistics or numbers such as lung to head ratio. The doctors were cautiously optimistic and we were told to be the same. They were 90% certain that she would need ECMO ( heart lung bypass) after she was born to help oxygenate her blood and give her lungs and heart a chance to rest and to ease pulmonary hypertension ( all CDH babies have this to some degree). The right sided CDH cases can be very severe due to the large liver being involved. We wouldn't know the outcome of the diagnosis until after she was born. This was so scary for us. The doctors decided to induce me @ 39wks to so that the team of about 6 could be ready.
Delivery: crazy!! We got to the hospital around 12:30 am on 7/22/15. Evey was born at 7:04 pm
July 28: surgery to fix the hernia. (#1)
Sept 12: because of the on going feeding issues docs decided to do a CT scan to look for the presence of a vascular ring due to Evey's right aortic arch. What they found in addition to a vascular ring was that Evey had a recurrent hernia!! The surgeons decided to do an exploratory surgery using cameras to see what they were dealing with. They chose to push air into her chest cavity in hopes that it would help push her diaphragm down and her right lung would be strong enough to stay inflated(#2)
Sept 13: docs tried to extubate Evey but failed and had to reintubate 30 min later
Sept 14: Evey had her 2nd repair surgery where surgeons placed a gortex patch to help hold the diaphragm down.(#3)
Sept 20: Evey had emergency bowel surgery (ladd's proceedure) to fix a malrotation and blockage. (#4)
Oct 14: Evey came home!!
Oct 15: Evey had a crying fit and couldn't calm down. She started turning gray and got air hungry and panicky!! We ended up rushing to the ER at Cardon where they admitted her to the PICU. The surgeons xrayed her chest and said they felt like the patch had started to fail again. If they were to need to do surgery sooner that 6 mos, she would probably not survive (due to inflammation and the amount of major blood vessels in that area) she needs to get bigger and grow some identifiable tissue. The good thing is as long as her bowel doesn't get involved and she isn't too symptomatic she will be ok. They plan on doing a third repair surgery in about a year no matter what.
Oct 20: Evey had her vascular ring surgery. (#5)
Oct 26: Evey went to the OR to have a broviak IV placed.
Oct 30 morning: Evey's broviak was causing her so much pain. The docs did a dye study on it and found it was broken so back to the OR to remove it.
Oct 30th evening: Evey had a respiratory arrest due to some airway issues and needed to have chest compressions done for almost 2 min. They reinubated her to protect her airway.
Nov 3: Evey will have a trach evaluation done in the OR either today or Thursday. If they find any evidence of tracheal malacia (very common in CDH babies where the trachea becomes floppy and causes the airway to collapse) or vocal cord paralysis (complication of the vascular ring surgery) they will put in a tracheostomy until her airway is strengthened over time or until they can fix the airway issue. This is a longer lasting but still temporary fix to the ventilator. She may or may not need oxygen with the trach in the future but at least she will be able to work toward coming home. (It will be her 6th surgery)
This little one is the strongest person I know!! She has not let this situation break her spirit. I hate watching her suffer but she is so amazing and just keeps taking it. I know that she will be home with us one day soon!!
For more information and updates, please visit Evey's FaceBook page.
From Amber, Evey's mom:
For those of you that are not caught up or are confused by Evey's long complicated medical history I wanted to share with you a comprehensive overview of the past few months.
On 6/4/15 I went to the follow-up ultrasound at my obgyn because at 24 weeks Evey was found to have a right-sided aortic arch (rare anatomical variant in the heart in which the aortic arch is on the right side rather than on the left) At this point I was 32 weeks pregnant. We were told that our baby had a severe defect. Evey's CDH was found to be on the right side and was presented to us as severe. We were told liver and kidney were up in her chest cavity pressing up on her right lung and pushing her heart and left lung to the left. I was also suffering from polyhydramnios (excess amniotic fluid) because baby Evey was having a tough time swallowing. I was so uncomfortable!! The docs also told me that with the excess fluid I could go into labor early which would make her survival rate even lower. We were so devastated and scared. My husband Stevie even had to stop preparing the baby's room because we didn't know if we would ever be bringing her home. Over the next 7 weeks we met with surgical teams, Neonatologists, and toured NICUs at two different hospitals. I went to appointments 2x a week for nonstress tests and ultrasounds. We had a fetal MRI which showed some lung on the left but we're not given any statistics or numbers such as lung to head ratio. The doctors were cautiously optimistic and we were told to be the same. They were 90% certain that she would need ECMO ( heart lung bypass) after she was born to help oxygenate her blood and give her lungs and heart a chance to rest and to ease pulmonary hypertension ( all CDH babies have this to some degree). The right sided CDH cases can be very severe due to the large liver being involved. We wouldn't know the outcome of the diagnosis until after she was born. This was so scary for us. The doctors decided to induce me @ 39wks to so that the team of about 6 could be ready.
Delivery: crazy!! We got to the hospital around 12:30 am on 7/22/15. Evey was born at 7:04 pm
July 28: surgery to fix the hernia. (#1)
Sept 12: because of the on going feeding issues docs decided to do a CT scan to look for the presence of a vascular ring due to Evey's right aortic arch. What they found in addition to a vascular ring was that Evey had a recurrent hernia!! The surgeons decided to do an exploratory surgery using cameras to see what they were dealing with. They chose to push air into her chest cavity in hopes that it would help push her diaphragm down and her right lung would be strong enough to stay inflated(#2)
Sept 13: docs tried to extubate Evey but failed and had to reintubate 30 min later
Sept 14: Evey had her 2nd repair surgery where surgeons placed a gortex patch to help hold the diaphragm down.(#3)
Sept 20: Evey had emergency bowel surgery (ladd's proceedure) to fix a malrotation and blockage. (#4)
Oct 14: Evey came home!!
Oct 15: Evey had a crying fit and couldn't calm down. She started turning gray and got air hungry and panicky!! We ended up rushing to the ER at Cardon where they admitted her to the PICU. The surgeons xrayed her chest and said they felt like the patch had started to fail again. If they were to need to do surgery sooner that 6 mos, she would probably not survive (due to inflammation and the amount of major blood vessels in that area) she needs to get bigger and grow some identifiable tissue. The good thing is as long as her bowel doesn't get involved and she isn't too symptomatic she will be ok. They plan on doing a third repair surgery in about a year no matter what.
Oct 20: Evey had her vascular ring surgery. (#5)
Oct 26: Evey went to the OR to have a broviak IV placed.
Oct 30 morning: Evey's broviak was causing her so much pain. The docs did a dye study on it and found it was broken so back to the OR to remove it.
Oct 30th evening: Evey had a respiratory arrest due to some airway issues and needed to have chest compressions done for almost 2 min. They reinubated her to protect her airway.
Nov 3: Evey will have a trach evaluation done in the OR either today or Thursday. If they find any evidence of tracheal malacia (very common in CDH babies where the trachea becomes floppy and causes the airway to collapse) or vocal cord paralysis (complication of the vascular ring surgery) they will put in a tracheostomy until her airway is strengthened over time or until they can fix the airway issue. This is a longer lasting but still temporary fix to the ventilator. She may or may not need oxygen with the trach in the future but at least she will be able to work toward coming home. (It will be her 6th surgery)
This little one is the strongest person I know!! She has not let this situation break her spirit. I hate watching her suffer but she is so amazing and just keeps taking it. I know that she will be home with us one day soon!!
For more information and updates, please visit Evey's FaceBook page.
Organizer and beneficiary
Christine Battaglia
Organizer
Scottsdale, AZ
Amber D'Onofrio
Beneficiary