Help #teamMadilyn Come Home!
Donation protected
Update as of 12/15/16
We sort of let this go without being updated due to the fact we updated our facebook daily and Madi had come home. In the last 2 weeks though things changed. I updated the amount needed due to the fact that now we are in limbo waiting for transportation to be approved by insurance IF they approve it at all. As of now they have said no but it has been escalated. It's been 3 days since they said no and Madi is just sitting there paralyzed and sedated waiting. It's going to cost "at least $10,000" according to our case worker to have med flight take her to Ai DuPont in DE. Hopefully insurance covers it and all is well but it isn't looking good and anything donated in the event insurance does pay will go towards the medical bills already piled up from her 4 months in the NICU and last couple of weeks now in the PICU here in VA which is already well over what we have received or could ever expect to get. Insurance has covered a tremendous amount already but we do owe a lot still on top of her meds that when home we're costing us over 300 a month. All I care about at the moment though is getting her to where she can get the care she needs which doesn't seem to be happening at the hospital we are currently at. Please help if possible and reach out to any avenue you can think of that could persuade insurance to cover the flight. Thank you all so much for your generosity so far. I can't put into words how it makes me feel. Thank you all.
OK everyone. I think the time has come. I hate to even do this but the longer this goes on the more I realize we could use the help. Fourth of July weekend was the last time I remember being stress free. The Wednesday after July 4th I was back to work and received a call from Tiffany (my wife) as she was crying telling me I needed to head to the hospital because our baby girl that was due Oct 13th was in distress and the Dr told her to head to the hospital and I should be there with her so he could talk to us. My wife was admitted to the hopsital due to a reverse diastolic flow in the umbilical cord. This is someting that I have found out is very very bad. They gave my wife steroids in order to prepare Madilyn's tiny lungs to breathe and we played a waiting game. Even though this reversed flow usually does not get better, in our case it did. On day 2 they rechecked the flow and it was no longer reversed but it was still absent which is still no good. On day 5 the recheck showed it was still not reversed so we decided it was best to leave little Madi in for as long as possilble to allow her the best chances to grow and survive once she was forced into this world. On day 6 I decided to go back to work becauese we couldn't afford for me to miss any more time. This decision was made because nobody knew how long this would be. It could have been 2 months or even all the way to due date with my wife in a hospital bed. Madi did NOT want to wait that long. Day 7 came (7/13/16) and I got a call from my eerily calm wife saying I needed to come. They were taking her out. The flow had gone reversed again and was even worse than before. Madilyn Avery Bonafe' was born at 5:42pm on 7/13/16 at 480 grams. That's just over 1 pound. I heard her little tiny cry just once after I heard the doctors announce that she was here. I then was allowed to walk over and see her and when I reached out with my finger to touch her hand she actually opened that tiny hand that made no sense to me and grabbed the tip of my finger. Her hand was so small she couldn't even wrap around the tip of my finger. Day one was rough to see. She was breathing on her own but struggling very very hard to get air. It was hard to watch. Day 2 as we went to say good night to her we walked into the room to a bunch of nurses and doctors rushing around the room and her incubator opened up. Clearly something had just happened. They let us know that her line that was in her umbilical cord had ripped out due to her skin being so fragile. They were able to get another one back in but she was not getting the oxygen she needed. She kept dropping and would not come back. We stayed in the room for about an hour until my chest hurt and I felt like I couldn't breathe. Just about that time my wife turned to me and said we should just go to sleep. There wasn't anything we could do and the more we lose sleep the worst it would be on us. Day 3 came and my wife was being discharged (My wife begged to leave) and every time we went to visit her she was doing very well. They had to turn the oscillating ventilator on to help her breathe which to me is a double edged sword. She is doing better and doesn't look like she is struggling so much, but that's due to a machine breathing for her. So good and bad. They have her sedated because she is such a crazy kid that she won't sit still and whenever she moves her oxygen saturation goes down. This seemed to help a lot and she hasn't had too many bad days now. they have given her several blood transfusions and platelets as well as a lot of other stuff that I don't quite understand so it's hard for me to remember what they said. They've done two ultrasounds on her head to search for brain bleeds and (knock on wood) she doesn't have any. Her lungs are premature and not great but they are getting better. She has a PDA but apparently all babies do and it "should" close on it's own. If it doesn't they may have to give her medicine to help or could possibly need to do surgery if that doesn't work. She is a fighter and I know she can do this. She is a week old tomorrow (7/20/16 which is also our son Channings 4th birthday) and so far today she is doing great. I have now missed 2 and a half weeks of work and wed last week was the last of my vacation/sick leave I had.
The hospital is a 40 min drive one way away with a 5 dollar toll one way. So on top of no income on my end so far we have added costs for me to be able to go visit her. I will be forced to go back to work on monday to be able to live. If we could get any help possilbe it would be used for a multitude of things. Number 1 being the medical bills that we will incur. We have great insurance but there will still be bills coming in i'm sure. Number 2 would be to offset me taking time off. There will be very hard days to come over the next 3 months and it would be very difficult to stay working full time and miss everything. Number 3 will be for the costs of bringing her home. We were obviously not expecting her this early and had just barely started to prepare. We don't have ANY clothes small enough for her when she comes home. I'm sure with a premie her size there will be things needed that we did not need for baby number 1. I don't want to bring up anything negative but in that event we will also need money. You know what I mean. I'm not saying it. I can't even begin to put a goal on this as I have no clue what something like this could cost us. I've heard the medical bills themselves before insurance can be in the millions. We aren't sure what that means for us to be honest but I will be updating this as we find any info out. Only time will tell for all of this but if you saw this little girl you know that Madi is a fighter. She is crazy active for how tiny she is and is doing good so far. She is beautiful and I can not wait to bring her home to be with Mommy, Brother and I. I am sure I left out some details since my brain is completely fried from this 2 week roller coaster ride. But I promise I will try my best to keep this up to date. I love everyone and thank you in advance for anything you can do to help. #teamMadilyn
We sort of let this go without being updated due to the fact we updated our facebook daily and Madi had come home. In the last 2 weeks though things changed. I updated the amount needed due to the fact that now we are in limbo waiting for transportation to be approved by insurance IF they approve it at all. As of now they have said no but it has been escalated. It's been 3 days since they said no and Madi is just sitting there paralyzed and sedated waiting. It's going to cost "at least $10,000" according to our case worker to have med flight take her to Ai DuPont in DE. Hopefully insurance covers it and all is well but it isn't looking good and anything donated in the event insurance does pay will go towards the medical bills already piled up from her 4 months in the NICU and last couple of weeks now in the PICU here in VA which is already well over what we have received or could ever expect to get. Insurance has covered a tremendous amount already but we do owe a lot still on top of her meds that when home we're costing us over 300 a month. All I care about at the moment though is getting her to where she can get the care she needs which doesn't seem to be happening at the hospital we are currently at. Please help if possible and reach out to any avenue you can think of that could persuade insurance to cover the flight. Thank you all so much for your generosity so far. I can't put into words how it makes me feel. Thank you all.
OK everyone. I think the time has come. I hate to even do this but the longer this goes on the more I realize we could use the help. Fourth of July weekend was the last time I remember being stress free. The Wednesday after July 4th I was back to work and received a call from Tiffany (my wife) as she was crying telling me I needed to head to the hospital because our baby girl that was due Oct 13th was in distress and the Dr told her to head to the hospital and I should be there with her so he could talk to us. My wife was admitted to the hopsital due to a reverse diastolic flow in the umbilical cord. This is someting that I have found out is very very bad. They gave my wife steroids in order to prepare Madilyn's tiny lungs to breathe and we played a waiting game. Even though this reversed flow usually does not get better, in our case it did. On day 2 they rechecked the flow and it was no longer reversed but it was still absent which is still no good. On day 5 the recheck showed it was still not reversed so we decided it was best to leave little Madi in for as long as possilble to allow her the best chances to grow and survive once she was forced into this world. On day 6 I decided to go back to work becauese we couldn't afford for me to miss any more time. This decision was made because nobody knew how long this would be. It could have been 2 months or even all the way to due date with my wife in a hospital bed. Madi did NOT want to wait that long. Day 7 came (7/13/16) and I got a call from my eerily calm wife saying I needed to come. They were taking her out. The flow had gone reversed again and was even worse than before. Madilyn Avery Bonafe' was born at 5:42pm on 7/13/16 at 480 grams. That's just over 1 pound. I heard her little tiny cry just once after I heard the doctors announce that she was here. I then was allowed to walk over and see her and when I reached out with my finger to touch her hand she actually opened that tiny hand that made no sense to me and grabbed the tip of my finger. Her hand was so small she couldn't even wrap around the tip of my finger. Day one was rough to see. She was breathing on her own but struggling very very hard to get air. It was hard to watch. Day 2 as we went to say good night to her we walked into the room to a bunch of nurses and doctors rushing around the room and her incubator opened up. Clearly something had just happened. They let us know that her line that was in her umbilical cord had ripped out due to her skin being so fragile. They were able to get another one back in but she was not getting the oxygen she needed. She kept dropping and would not come back. We stayed in the room for about an hour until my chest hurt and I felt like I couldn't breathe. Just about that time my wife turned to me and said we should just go to sleep. There wasn't anything we could do and the more we lose sleep the worst it would be on us. Day 3 came and my wife was being discharged (My wife begged to leave) and every time we went to visit her she was doing very well. They had to turn the oscillating ventilator on to help her breathe which to me is a double edged sword. She is doing better and doesn't look like she is struggling so much, but that's due to a machine breathing for her. So good and bad. They have her sedated because she is such a crazy kid that she won't sit still and whenever she moves her oxygen saturation goes down. This seemed to help a lot and she hasn't had too many bad days now. they have given her several blood transfusions and platelets as well as a lot of other stuff that I don't quite understand so it's hard for me to remember what they said. They've done two ultrasounds on her head to search for brain bleeds and (knock on wood) she doesn't have any. Her lungs are premature and not great but they are getting better. She has a PDA but apparently all babies do and it "should" close on it's own. If it doesn't they may have to give her medicine to help or could possibly need to do surgery if that doesn't work. She is a fighter and I know she can do this. She is a week old tomorrow (7/20/16 which is also our son Channings 4th birthday) and so far today she is doing great. I have now missed 2 and a half weeks of work and wed last week was the last of my vacation/sick leave I had.
The hospital is a 40 min drive one way away with a 5 dollar toll one way. So on top of no income on my end so far we have added costs for me to be able to go visit her. I will be forced to go back to work on monday to be able to live. If we could get any help possilbe it would be used for a multitude of things. Number 1 being the medical bills that we will incur. We have great insurance but there will still be bills coming in i'm sure. Number 2 would be to offset me taking time off. There will be very hard days to come over the next 3 months and it would be very difficult to stay working full time and miss everything. Number 3 will be for the costs of bringing her home. We were obviously not expecting her this early and had just barely started to prepare. We don't have ANY clothes small enough for her when she comes home. I'm sure with a premie her size there will be things needed that we did not need for baby number 1. I don't want to bring up anything negative but in that event we will also need money. You know what I mean. I'm not saying it. I can't even begin to put a goal on this as I have no clue what something like this could cost us. I've heard the medical bills themselves before insurance can be in the millions. We aren't sure what that means for us to be honest but I will be updating this as we find any info out. Only time will tell for all of this but if you saw this little girl you know that Madi is a fighter. She is crazy active for how tiny she is and is doing good so far. She is beautiful and I can not wait to bring her home to be with Mommy, Brother and I. I am sure I left out some details since my brain is completely fried from this 2 week roller coaster ride. But I promise I will try my best to keep this up to date. I love everyone and thank you in advance for anything you can do to help. #teamMadilyn
Organizer
Brandon Bonafe
Organizer
Claymont, DE