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This is Grayson, Juliet's Big Brother
( In Juliet's Daddys words) The condition she has is called Tetralogy of Fallot with absent pulmonary valve.
If the pulmonary valve was there, this would be a one and done surgery. It's usually referred to as one of the causes of "blue baby" syndrome. Basically the heart doesn't get the blood oxygenated. However, due to the absent pulmonary valve, she will need surgeries through her life. The first 2-5 will be open heart. They will be spaced out over years, and after she's grown enough, they'll be able to actually go in with a catheter through her groin to add a new valve. As her heart stops growing, and she reaches adulthood, she should only need that surgery every 8-10 years.
She will be with us at 7:30AM on July 13th, 2016
The what-ifs:
1) She isn't breathing at birth. This could indicate she doesn't have airways substantial for oxygen to pass through. The condition she has enlarges the heart because there is so much blood flow in the chambers. This causes the lungs to have less space than a normal person. In her particular case, it doesn't look like this will be a problem, (though they ever remind you that it could), and she should be fine. But, in the instance she is not breathing, they probably will not be able to do much as getting oxygen through her system is not the only issue, its getting oxygen to her cells that the heart probably won't do if this is the case.
2) She's breathing, but blue as tuna. If this is the case, she'll probably go right to surgery. We're ok with this, but it's not ideal. The heart is still a super tiny miracle worker, and isn't as easy to work on. Nonetheless, I'll take this over scary option 1.
3) She's breathing, and isn't too terribly blue (she'll be blue regardless we're told). After a few weeks in NICU, she might even get to go home with us. If so, depending on how strong her airways are, and how much oxygen is actually getting to the extremities, determines whether at month 1,2,3,4, or five she gets surgery. Yes, it could be as long as 5 months that she wouldn't need it. This would be the least ideal for my budget (as you get double the copays), but great for my angel-to-be.
I believe in miracles. I believe she'll be fine if it's God's will. Nevertheless, I also believe we've been given modern medicine for a reason. We've advanced in so many ways for the benefit of mortal man. I appreciate prayers for Juliet, but I don't think God is going to just heal her. Call it a lack of faith if you will, but I think we're past that. Instead, I'd prefer prayers for the incredible surgeon, Dr. Michael Ciccolo, who will be putting things where they are supposed to be inside my daughter. Pray for steady hands and keen eyesight. Pray he's guided to know just what to do for her survival, and so that she may thrive in the future. That is my hope. He's a pretty incredible man. He pretty much saves lives all day. Sometimes I think God needs us to rely on others. People need opportunities to give and be given to. I'm grateful to be somewhere that can benefit from someone with his experience and expertise.
#weheartjuliet
https://www.healthgrades.com/physician/dr-michael-ciccolo-xmwdc
The medical bills will be astounding, so it would be great to help offset some of the burden for Mat & Brittany. She will continue to need surgery for many years. This is a starting point. Please pass this along to anyone who asks what they can do to help the family. Any amount is appreciated by the family. The amount above is a starting point for what will be a very long journey.
Kara ( one of Juliet's G-Ma's)
( In Juliet's Daddys words) The condition she has is called Tetralogy of Fallot with absent pulmonary valve.
If the pulmonary valve was there, this would be a one and done surgery. It's usually referred to as one of the causes of "blue baby" syndrome. Basically the heart doesn't get the blood oxygenated. However, due to the absent pulmonary valve, she will need surgeries through her life. The first 2-5 will be open heart. They will be spaced out over years, and after she's grown enough, they'll be able to actually go in with a catheter through her groin to add a new valve. As her heart stops growing, and she reaches adulthood, she should only need that surgery every 8-10 years.
She will be with us at 7:30AM on July 13th, 2016
The what-ifs:
1) She isn't breathing at birth. This could indicate she doesn't have airways substantial for oxygen to pass through. The condition she has enlarges the heart because there is so much blood flow in the chambers. This causes the lungs to have less space than a normal person. In her particular case, it doesn't look like this will be a problem, (though they ever remind you that it could), and she should be fine. But, in the instance she is not breathing, they probably will not be able to do much as getting oxygen through her system is not the only issue, its getting oxygen to her cells that the heart probably won't do if this is the case.
2) She's breathing, but blue as tuna. If this is the case, she'll probably go right to surgery. We're ok with this, but it's not ideal. The heart is still a super tiny miracle worker, and isn't as easy to work on. Nonetheless, I'll take this over scary option 1.
3) She's breathing, and isn't too terribly blue (she'll be blue regardless we're told). After a few weeks in NICU, she might even get to go home with us. If so, depending on how strong her airways are, and how much oxygen is actually getting to the extremities, determines whether at month 1,2,3,4, or five she gets surgery. Yes, it could be as long as 5 months that she wouldn't need it. This would be the least ideal for my budget (as you get double the copays), but great for my angel-to-be.
I believe in miracles. I believe she'll be fine if it's God's will. Nevertheless, I also believe we've been given modern medicine for a reason. We've advanced in so many ways for the benefit of mortal man. I appreciate prayers for Juliet, but I don't think God is going to just heal her. Call it a lack of faith if you will, but I think we're past that. Instead, I'd prefer prayers for the incredible surgeon, Dr. Michael Ciccolo, who will be putting things where they are supposed to be inside my daughter. Pray for steady hands and keen eyesight. Pray he's guided to know just what to do for her survival, and so that she may thrive in the future. That is my hope. He's a pretty incredible man. He pretty much saves lives all day. Sometimes I think God needs us to rely on others. People need opportunities to give and be given to. I'm grateful to be somewhere that can benefit from someone with his experience and expertise.
#weheartjuliet
https://www.healthgrades.com/physician/dr-michael-ciccolo-xmwdc
The medical bills will be astounding, so it would be great to help offset some of the burden for Mat & Brittany. She will continue to need surgery for many years. This is a starting point. Please pass this along to anyone who asks what they can do to help the family. Any amount is appreciated by the family. The amount above is a starting point for what will be a very long journey.
Kara ( one of Juliet's G-Ma's)
Organizer and beneficiary
Mathew Tucker
Beneficiary