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Posted: 8/16/2022 6:52:50 PM EDT
[#1]
Continuous prayers for your little girl.
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Posted: 8/16/2022 6:53:25 PM EDT
[#2]
Prayers sent
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Posted: 8/16/2022 6:54:52 PM EDT
[#3]
If I’m not responding to everyone of you know I have read every single post and it has brought light.
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Posted: 8/16/2022 6:58:26 PM EDT
[#4]
Praying for you brother.
We’re dealing with a cardiac issue with our youngest son, 13YO. Getting an ablation in a month to address SVT. Just make sure your pediatric interventional cardiologist is a badass. It’s pretty specified, so they usually are. |
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Posted: 8/16/2022 7:24:07 PM EDT
[#5]
I know a little girl who had a heart transplant before she was a year old. She's now in the cheerleaders at high school and is doing her drivers training. Some really remarkable medical folks out there.
Prayers to your little girl. |
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Posted: 8/16/2022 7:27:21 PM EDT
[#6]
Prayers up for all of you.
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Posted: 8/16/2022 7:28:25 PM EDT
[#7]
Quote HistoryQuoted: Praying for you brother. We’re dealing with a cardiac issue with our youngest son, 13YO. Getting an ablation in a month to address SVT. Just make sure your pediatric interventional cardiologist is a badass. It’s pretty specified, so they usually are. Luckily We are at a womens specialized hospital with a childrens attached. I do know a lot from south Florida are sent here. That said I’ve heard comments about they are struggling with labor as well - I doubt a pediatric cardiologist/surgeon falls into that category though Prayers to your 13yr old. I thought I knew stress prior to kids……man I’ve never felt stress like this. I know it’s cliche but literally nothing else matters and I can’t do a damn thing about it but hold her little hand |
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Posted: 8/16/2022 7:31:11 PM EDT
[#8]
Quote HistoryQuoted: I know a little girl who had a heart transplant before she was a year old. She's now in the cheerleaders at high school and is doing her drivers training. Some really remarkable medical folks out there. Prayers to your little girl. The stories are amazing I can’t believe some of these with kids at 30+. That’s the work that was done back in the 90s- incredible. |
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Posted: 8/16/2022 7:32:20 PM EDT
[#9]
Those of you telling personal stories I am sharing them with my wife and it seems to be bringing comfort.
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Posted: 8/16/2022 7:34:42 PM EDT
[#10]
Prayers up!
Not just for the little one, but for you as the parents as well. |
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Posted: 8/16/2022 7:41:56 PM EDT
[#11]
I want you to be an adult about this. My family lost a little one at 56 days due to a heart defect not long ago.
I would pray this does not go that way, but, it can. |
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Posted: 8/16/2022 7:46:42 PM EDT
[#12]
Praying for little Madison, and for Mom and Dad!
My daughter is an RT at Cincinnati Children's Hospital. They do miracles every day! Have faith! |
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Posted: 8/16/2022 7:49:40 PM EDT
[#13]
Quoted: Just brought our little girl into the world yesterday. She’s had a rough go - she came so quick I actually did the birth in our kitchen. Came exactly 1 week early. During the 24 hour check she failed the heart screening - during pregnancy the heart was strong. They rolled her to NICU and found On monitors she will randomly drop blood ox. They did an X-ray came back clear, did an Ecco and they think they might have seen a aortic pulmonary window which is where a deoxygenated artery has a small hole going into an oxygenated one. They said it's rare and didn't 100% confirm it but think they see it on the Ecco (they weren't specifically looking for it)they also said new borns hearts shunt as well which could also the the culprit. The plan for now is to try to ween her off of oxygen and then hold off oxygen for 48 hours. At that point, or at some point she can't get off oxygen they will redo the Ecco to confirm it's all ok. If not and the hole is there it is operable. Haven't spoken to a cardiologist to know if it comes to that how risky it is. 1) I know you can’t give medical diagnosis etc but wondering if there are any smart questions we should be asking and or things to confirm. 2) for those who are not cardiologists we could really use prayers that this is just shunting and will resolve itself. Eta: it tanks when she cries and then sometimes randomly will just drop @GeneralDisaray Prayers sent for your little girl. What area of Florida are you in? One of my kids spent some time in Johns Hopkins All Children's Hospital in St Petersburg. Amazing results, children are resilient and doctors are amazing. |
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Posted: 8/16/2022 7:52:38 PM EDT
[#14]
Questions to be asking include "where is the best / most experienced place to have whatever diagnostic to confirm, and whatever treatment is needed?"
The hospital you are at may not be that place. Speak up for your kid, you have to be a calm and very discerning advocate. Don't let the docs walk away without being satisfied. My son had some issues right after birth, not cardiac, but very clearly respiratory, and imaging showed gastric abnormalities as well. He turns 8 in a month. Eta May God bless your family! |
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Posted: 8/16/2022 8:25:14 PM EDT
[#15]
Not a doctor, but have worked in a cardiac cath lab for a decade. Sounds like a PDA; if it is they could possibly fix it without surgery.
Do your research on the cardiologist and definitely ask around- although, like mentioned before- pediatric interventional cardiologists are typically bad asses… I had a congenital aortic stenosis (valve issue) and required open heart at six. Still see a cardiologist every year, but doing well almost 26 years later! I have a little girl and can only imagine what you’re going through. Prayers heading your way. |
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Posted: 8/16/2022 8:40:16 PM EDT
[#16]
Its a patent ductus and it is present because she was early. It will either close spontaneously or they will give Motrin or as a last resort do a patch. Not a super serious presentation these days.
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Posted: 8/16/2022 9:11:00 PM EDT
[#17]
Prayers up for all of you. Good job on the delivery.
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Posted: 8/16/2022 9:19:30 PM EDT
[#18]
Prayers to your little girl and family.
My son was born with a VSD (heart defect), the hole was the size of a dime. He had 2 symptoms of Tetralogy of Fallot (TOF) and ended up getting surgery at 3 months. He as perfectly healthy as can be now, hang in there, this is a bump in life and you will all get through it. |
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Posted: 8/16/2022 9:25:13 PM EDT
[#19]
And I thought I had a rough day today.
OP, my prayers are with you and your family. We have a God who listens and answers. |
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Posted: 8/16/2022 9:29:37 PM EDT
[#20]
Prayers brother. Just had my first kid in January and could not even imagine being in your shoes.
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Posted: 8/16/2022 9:34:44 PM EDT
[#21]
https://www.wolfsonchildrens.com/doctors/pediatric-thoracic-and-cardiac-surgeon/dr-michael-shillingford-md
This is a friend of mine. If you have a surgical issue, I’d highly recommend consulting with him. Let me know if I can make an introduction. ETA my two girls both ended up in the NICU (1 for a week and the other for 5 weeks) with early deliveries. Prayers out to you, your wife, and your little girl. I remember how scary those monitor alarms were. Your girl will likely be out in no time. I’ve known a handful of families with babies who had surgical intervention and all are doing well. I’m sure your baby girl will be fine. Have you named her yet? |
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Posted: 8/16/2022 9:53:20 PM EDT
[#22]
Quote HistoryQuoted: @GeneralDisaray Prayers sent for your little girl. What area of Florida are you in? One of my kids spent some time in Johns Hopkins All Children's Hospital in St Petersburg. Amazing results, children are resilient and doctors are amazing. Quote HistoryQuoted: Quoted: Just brought our little girl into the world yesterday. She’s had a rough go - she came so quick I actually did the birth in our kitchen. Came exactly 1 week early. During the 24 hour check she failed the heart screening - during pregnancy the heart was strong. They rolled her to NICU and found On monitors she will randomly drop blood ox. They did an X-ray came back clear, did an Ecco and they think they might have seen a aortic pulmonary window which is where a deoxygenated artery has a small hole going into an oxygenated one. They said it's rare and didn't 100% confirm it but think they see it on the Ecco (they weren't specifically looking for it)they also said new borns hearts shunt as well which could also the the culprit. The plan for now is to try to ween her off of oxygen and then hold off oxygen for 48 hours. At that point, or at some point she can't get off oxygen they will redo the Ecco to confirm it's all ok. If not and the hole is there it is operable. Haven't spoken to a cardiologist to know if it comes to that how risky it is. 1) I know you can’t give medical diagnosis etc but wondering if there are any smart questions we should be asking and or things to confirm. 2) for those who are not cardiologists we could really use prayers that this is just shunting and will resolve itself. Eta: it tanks when she cries and then sometimes randomly will just drop @GeneralDisaray Prayers sent for your little girl. What area of Florida are you in? One of my kids spent some time in Johns Hopkins All Children's Hospital in St Petersburg. Amazing results, children are resilient and doctors are amazing. She’s at Winnie Palmer in Orlando |
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Posted: 8/16/2022 9:54:11 PM EDT
[#23]
Quote HistoryQuoted: Questions to be asking include "where is the best / most experienced place to have whatever diagnostic to confirm, and whatever treatment is needed?" The hospital you are at may not be that place. Speak up for your kid, you have to be a calm and very discerning advocate. Don't let the docs walk away without being satisfied. My son had some issues right after birth, not cardiac, but very clearly respiratory, and imaging showed gastric abnormalities as well. He turns 8 in a month. Eta May God bless your family! Good call. My step mom has one of the best heart surgeons in Florida. I’ll ask them to see who he may know of or if the hospital is solid |
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Posted: 8/16/2022 9:54:51 PM EDT
[#24]
Quote HistoryQuoted: Not a doctor, but have worked in a cardiac cath lab for a decade. Sounds like a PDA; if it is they could possibly fix it without surgery. Do your research on the cardiologist and definitely ask around- although, like mentioned before- pediatric interventional cardiologists are typically bad asses… I had a congenital aortic stenosis (valve issue) and required open heart at six. Still see a cardiologist every year, but doing well almost 26 years later! I have a little girl and can only imagine what you’re going through. Prayers heading your way. Thanks! |
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Posted: 8/16/2022 9:55:49 PM EDT
[#25]
Quote HistoryQuoted: Its a patent ductus and it is present because she was early. It will either close spontaneously or they will give Motrin or as a last resort do a patch. Not a super serious presentation these days. It seems like what they are expecting as the treatment plan is sit and wait for now. I’m OK with that. One of us are with her 24/7 and watching o2 and feeling the nurses out, |
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Posted: 8/16/2022 9:56:28 PM EDT
[#26]
Prayers sent.
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Posted: 8/16/2022 9:57:11 PM EDT
[#27]
Quote HistoryQuoted: https://www.wolfsonchildrens.com/doctors/pediatric-thoracic-and-cardiac-surgeon/dr-michael-shillingford-md This is a friend of mine. If you have a surgical issue, I’d highly recommend consulting with him. Let me know if I can make an introduction. ETA my two girls both ended up in the NICU (1 for a week and the other for 5 weeks) with early deliveries. Prayers out to you, your wife, and your little girl. I remember how scary those monitor alarms were. Your girl will likely be out in no time. I’ve known a handful of families with babies who had surgical intervention and all are doing well. I’m sure your baby girl will be fine. Have you named her yet? Thanks so much! I may take you up on that Yes baby girls name is Madison. Wife didn’t go for “dump truck” my 3 yr old wanted to name her |
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Posted: 8/16/2022 9:57:57 PM EDT
[#28]
Praying for answers, comfort and healing.
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Posted: 8/16/2022 9:59:10 PM EDT
[#29]
Again if I didn’t respond directly to you I am still reading and taking comfort in all of it
Those of you with personal stories have really helped especially my wife. While inside I am stressed to her, Madison, and my so , I’m solid and calm in the storm. I hate not being able to fix it. Your words of comfort have been amazing |
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Posted: 8/16/2022 9:59:46 PM EDT
[#30]
If I go silent I’m not ditching just trying to grab some shut eye
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Posted: 8/16/2022 10:00:43 PM EDT
[#31]
Prayers sent.
Please don’t worry too much. She was born at the best possible time to fix anything that may be wrong with her! |
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Posted: 8/16/2022 10:02:51 PM EDT
[#32]
Prayers sent.
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Posted: 8/16/2022 10:03:46 PM EDT
[#33]
Prayers for gour girl. Are you talking PFO? All babies have this prior to birth. Closes shortly thereafter. Hope that’s what it iz.
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Posted: 8/16/2022 10:08:02 PM EDT
[#34]
Quoted: Just brought our little girl into the world yesterday. She’s had a rough go - she came so quick I actually did the birth in our kitchen. Came exactly 1 week early. During the 24 hour check she failed the heart screening - during pregnancy the heart was strong. They rolled her to NICU and found On monitors she will randomly drop blood ox. They did an X-ray came back clear, did an Ecco and they think they might have seen a aortic pulmonary window which is where a deoxygenated artery has a small hole going into an oxygenated one. They said it's rare and didn't 100% confirm it but think they see it on the Ecco (they weren't specifically looking for it)they also said new borns hearts shunt as well which could also the the culprit. The plan for now is to try to ween her off of oxygen and then hold off oxygen for 48 hours. At that point, or at some point she can't get off oxygen they will redo the Ecco to confirm it's all ok. If not and the hole is there it is operable. Haven't spoken to a cardiologist to know if it comes to that how risky it is. 1) I know you can’t give medical diagnosis etc but wondering if there are any smart questions we should be asking and or things to confirm. 2) for those who are not cardiologists we could really use prayers that this is just shunting and will resolve itself. Eta: it tanks when she cries and then sometimes randomly will just drop Prayers sent. Plenty of good Pedi CV cardiologists and surgeons out there. She’s gonna do great. |
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Posted: 8/16/2022 10:10:37 PM EDT
[#35]
Quote HistoryQuoted: Thanks so much! I may take you up on that Yes baby girls name is Madison. Wife didn’t go for “dump truck” my 3 yr old wanted to name her Prayers up for Madison, and your wife and you also. You will let your 3 y.o. use "dump truck" as a nickname won't you? 
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Posted: 8/16/2022 10:11:20 PM EDT
[#36]
Prayers
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Posted: 8/16/2022 10:11:45 PM EDT
[#37]
Quote HistoryQuoted: Don't post much here, but here goes. Oldest was born with a coarctation of the aorta. Surgery at 5 days using the artery from his arm to make the repair. Heart was the size of a walnut. Went in below the left shoulder blade. Now 36 and going strong. Modern medicine is amazing. Prayers for you and yours. I had surgery at 12 days old for a coarc of the aorta. The left subclavian patch is the old school method. I have the same scar on the left shoulder blade. I turn 38 in a few weeks. Modern medicine truly is amazing. Prayers for you OP and your sweet little girl. |
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Posted: 8/16/2022 10:16:06 PM EDT
[#38]
Prayers sent up for Madison.
You should totally let her siblings nickname her dump truck! |
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Posted: 8/16/2022 10:17:32 PM EDT
[#39]
Quote HistoryQuoted: Prayers for gour girl. Are you talking PFO? All babies have this prior to birth. Closes shortly thereafter. Hope that’s what it iz. Thats why this place is awesome. So many knowledgeable people here. In Feb, when my son was sick and the local hospital couldn’t figure it out aftwr 2 trips to the ER. A member told me that it was most likely misc and to get him to a childrens hospital. Thats what I did and he recovered quick after a few months. |
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Posted: 8/16/2022 10:17:44 PM EDT
[#40]
Please let us know if we can support in any way.
You are not alone. |
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Posted: 8/16/2022 10:19:53 PM EDT
[#41]
Fuck man. Hope it turns out fine for your little girl. What a scary time even without complications. Hope you and mom and stay strong for each other.
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Posted: 8/16/2022 10:26:12 PM EDT
[#42]
When I trained, (25 years ago) surgical intervention for PDA's was common. Medication therapy has taken over as the standard of care, and I haven't done anesthesia for a PDA in a premie for probably 10 years.
Get some rest, good sir. Sending prayers out. Remember, she is His daughter, too. |
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Posted: 8/16/2022 10:27:08 PM EDT
[#43]
First, Happy Birthday to your little girl
 Second, I’ll gladly say a prayer for her.  Third, hang in there mom and dad. Remember to breath. Kids are tougher than you think.  |
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Posted: 8/16/2022 10:32:09 PM EDT
[#44]
been there done that with NICU, even had to do a surgery
he's fine now and i'll be praying that yours will be as well |
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Posted: 8/16/2022 10:39:08 PM EDT
[#45]
Prayers outbound for strength for Madison, wisdom for the doctors and medical staff, and comfort for mom and dad.
Wish you the best. |
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Posted: 8/16/2022 10:44:11 PM EDT
[#46]
Prayers sent
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Posted: 8/16/2022 10:46:12 PM EDT
[#47]
Prayers OP. Thoughts and Prayers.
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Posted: 8/16/2022 10:59:24 PM EDT
[#48]
Quote HistoryQuoted: Thank you guys! Anything we can do. This is terrible and I wouldn’t wish it on my worst enemy. Realize there's nothing you can do but be there for your wife and baby girl. Your little one doesn't know anything is wrong and probably isn't experiencing any pain minus the normal trauma of childbirth. Prayers to you all. |
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Posted: 8/17/2022 9:58:15 AM EDT
[#49]
Quote HistoryQuoted: Prayers for gour girl. Are you talking PFO? All babies have this prior to birth. Closes shortly thereafter. Hope that’s what it iz. They said there is definitely PFO but there is an indicator that there is an additional hole between two arteries off the aorta. It’s not confirmed though because In the initial ecco they weren’t looking for it |
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Posted: 8/17/2022 9:59:18 AM EDT
[#50]
Quote HistoryQuoted: Prayers up for Madison, and your wife and you also. You will let your 3 y.o. use "dump truck" as a nickname won't you? Quote HistoryQuoted: Quoted: Thanks so much! I may take you up on that Yes baby girls name is Madison. Wife didn’t go for “dump truck” my 3 yr old wanted to name her Prayers up for Madison, and your wife and you also. You will let your 3 y.o. use "dump truck" as a nickname won't you? He’s stubborn as shit he will probably just call her that forever |
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