Any pediatric cardiologists in the house? And prayers needed UPDATE pg3

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[ARCHIVED THREAD] - Any pediatric cardiologists in the house? And prayers needed UPDATE pg3 (Page 1 of 3)

Posted: 8/16/2022 5:37:28 PM EDT

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

Posted: 8/16/2022 5:38:44 PM EDT

[#1]

Here you go Brother.??

Posted: 8/16/2022 5:40:34 PM EDT

[#2]

Prayers upward bound, may God's healing touch, with help from skilled professionals, give her a long and healthy lifetime.

Posted: 8/16/2022 5:40:58 PM EDT

[#3]

Lord please help this baby girl and her family, in Jesus name!

Posted: 8/16/2022 5:42:23 PM EDT

[#4]

Prayers for a clean bill of health...

Posted: 8/16/2022 5:42:56 PM EDT

[#5]

Prayers sent for your baby girl. Prayers for you and Momma as you go thru this.

Posted: 8/16/2022 5:43:16 PM EDT

[#6]

Not a medical professional but for what’s it’s worth I was born with a heart defect. A deformed pulmonary artery and had surgery to repair it when I was 6 months old. That was 42 years ago with no long term lasting effects. It’s amazing the technology and advancements they have now.

Ask all the questions even if you think they’re dumb. Get all the information you can even if it’s just to make you feel better.

Good luck and prayers incoming.

Posted: 8/16/2022 5:43:26 PM EDT

[#7]

Thank you guys! Anything we can do. This is terrible and I wouldn’t wish it on my worst enemy.

Posted: 8/16/2022 5:44:09 PM EDT

[#8]

Prayers for your little one

Posted: 8/16/2022 5:44:33 PM EDT

[#9]

Quote History

Quoted:
Not a medical professional but for what’s it’s worth I was born with a heart defect. A deformed pulmonary artery and had surgery to repair it when I was 6 months old. That was 42 years ago with no long term lasting effects. It’s amazing the technology and advancements they have now.

Ask all the questions even if you think they’re dumb. Get all the information you can even if it’s just to make you feel better.

Good luck and prayers incoming.

View Quote

Thanks for that! It seems like a patch is what would happen if they did it. Of course I assume anything artery related is super risky.

Great to hear you’re went well and we are praying for the same

Posted: 8/16/2022 5:46:47 PM EDT

[#10]

Prayers for you and family!!

Posted: 8/16/2022 5:49:39 PM EDT

[#11]

Quote History

Quoted:
Lord please help this baby girl and her family, in Jesus name!

View Quote

Posted: 8/16/2022 5:50:02 PM EDT

[#12]

My niece was born with transposition of the great arteries. Basically her heart was built backwards. It was masked until she was born. Within seconds of her birth she went blue and alarms were going off and it was a terrifying scene. She was transferred to Children’s Hospital and had her first surgery at six hours. She had her second surgery, to completely reverse the arteries of her heart, at six days of age. She’s 31 now. You’ll have my prayers but also the encouraging words that so much can be done for the heart, it’s amazing what surgeons can do to correct these problems. Best wishes.

Posted: 8/16/2022 5:51:07 PM EDT

[#13]

Kids are resilient and you live in an age of medical wonders.

Congrats on the baby and prayers for you family.

Please try to limit your own stress! Take it one day at a time, one hour at a time.

Posted: 8/16/2022 5:52:05 PM EDT

[#14]

Quote History

Quoted:
Here you go Brother.??

View Quote

FPNI

Sent!

Posted: 8/16/2022 5:52:27 PM EDT

[#15]

I wish you and your family the very best.

Posted: 8/16/2022 5:52:44 PM EDT

[#16]

Praying for your child, you, and your family.

Posted: 8/16/2022 5:56:43 PM EDT

[#17]

Praying for your family.

Posted: 8/16/2022 5:59:39 PM EDT

[#18]

Prays

Posted: 8/16/2022 6:02:19 PM EDT

[#19]

Quote History

Quoted:
My niece was born with transposition of the great arteries. Basically her heart was built backwards. It was masked until she was born. Within seconds of her birth she went blue and alarms were going off and it was a terrifying scene. She was transferred to Children’s Hospital and had her first surgery at six hours. She had her second surgery, to completely reverse the arteries of her heart, at six days of age. She’s 31 now. You’ll have my prayers but also the encouraging words that so much can be done for the heart, it’s amazing what surgeons can do to correct these problems. Best wishes.

View Quote

Wow that brought tears to my eyes

Posted: 8/16/2022 6:02:23 PM EDT

[#20]

Prayers for your little girl. Just know that kids are resilient and she will not remember any of this no matter how hard she cries. They also heal super quick.

Posted: 8/16/2022 6:03:36 PM EDT

[#21]

We will keep you and your family in our thoughts and I got to say I'm jealous, it's on my bucket list to deliver a baby :-)

Posted: 8/16/2022 6:03:57 PM EDT

[#22]

I know it can be scary OP. But heart surgery- if baby needs that- has come a long way. And maybe baby won’t even have to go that route- my daughter was born with a small “hole in her heart” between the two top chambers. She had an echo every yr or so and by age 4 it was closed on its own. I am praying it’s something simple like that! (She’s now a delightful 16yr old)

Posted: 8/16/2022 6:04:25 PM EDT

[#23]

Tetrology of fallot?

Posted: 8/16/2022 6:07:12 PM EDT

[#24]

Prayers for the little one inbound

Posted: 8/16/2022 6:10:08 PM EDT

[#25]

My first son was born with tetralogy of fallot with pulmonary atresia,this also come to find out was associated with Noonans syndrome which is a compilation of birth defects. There were no out of the ordinary test results before he was born. He had surgery less than 36 hours old to put in a gore tex artery and subsequent less "intrusive" surgeries,stents etc. over his last 28 years and does decent. While i can't provide any great or even good answers i will tell you the surgeons who do this work and cardiologists are deeply committed and do care. Childrens Hospital in Boston is where my boy still goes to this day. You aren't alone,this can be terrifying but the leaps medicine has and continues to make are truly awesome.You probably are stunned and i understand your quest for questions to ask but keep in mind these tests take time and answers trickle,try and sleep whenever you can,you'll need it. . I will say a prayer and bump for cardiologists in the house.

Posted: 8/16/2022 6:10:19 PM EDT

[#26]

Sounds like either Patent Ductus Arteriosis or Patent Foramen Ovale

Both of which are easily correctible.

I’m sure your beautiful little baby will be fine, stay strong!

Posted: 8/16/2022 6:10:46 PM EDT

[#27]

Quote History

Quoted:
I know it can be scary OP. But heart surgery- if baby needs that- has come a long way. And maybe baby won’t even have to go that route- my daughter was born with a small “hole in her heart” between the two top chambers. She had an echo every yr or so and by age 4 it was closed on its own. I am praying it’s something simple like that! (She’s now a delightful 16yr old)

View Quote

They mention Ed that possibility too. Great to hear she’s well

Their biggest concern are th02 dips. She’ll settle at 95 but have random dips to mid 80s

Posted: 8/16/2022 6:12:07 PM EDT

[#28]

Quote History

Quoted:
Sounds like either Patent Ductus Arteriosis or Patent Foramen Ovale

Both of which are easily correctible.

I’m sure your beautiful little baby will be fine, stay strong!

View Quote

Prayers up.

Posted: 8/16/2022 6:12:07 PM EDT

[#29]

Prayers for you and your family.

Posted: 8/16/2022 6:12:38 PM EDT

[#30]

Not a medical professional - I believe many kids are born with heart defects and issues that close and heal as they get a bit older

Kids are strong

Posted: 8/16/2022 6:13:19 PM EDT

[#31]

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.

Posted: 8/16/2022 6:13:28 PM EDT

[#32]

Prayers sent……..

Posted: 8/16/2022 6:13:43 PM EDT

[#33]

Thanks all!

Those using the diagnosis terms all they gave us was that aortic pulmonary window. Even then they said they weren’t sure but wanted to see if the oxygen situation self corrected and then they would re Ecco

She was doing decently all day but this evening seems to be bouncing around a bit more

Posted: 8/16/2022 6:19:59 PM EDT

[#34]

I had a heart condition as well when I was born. It’s been a long time and ive been 100%.

As was said technology has come so far sounds like worse case they operate and fix it.

I think things will work out for you OP.

Posted: 8/16/2022 6:22:01 PM EDT

[#35]

My daughter turned blue after being born, I dragged a nurse in from the hallway. ASD, VSD, and a bunch of other problems. She had open heart surgery five years ago and 10 surgeries in total.

You wouldn’t know it to look at her now.

And no bikinis due to the zipper scar…. Which is good from a dad’s perspective.

Kids are tough, and the medical care has come a long way. She will be fine. But it will take 10 years off your life.

I can’t say enough good things about Boston Children’s Hospital Cardiac team or the NICU at Hasbro.

Posted: 8/16/2022 6:26:56 PM EDT

[#36]

Can't offer any help with medical questions, but I can and will pray. May we know her name?

Posted: 8/16/2022 6:28:10 PM EDT

[#37]

Aorto-Pulmonary window refers to the view they can see on the echo scan…

A PDA can sometimes close on its own, sometimes ibuprofen is used to help the process.

Let’s hope and pray it closes without needing surgery

Posted: 8/16/2022 6:31:32 PM EDT

[#38]

Will pray for sure.

Posted: 8/16/2022 6:35:57 PM EDT

[#39]

Quote History

Quoted:
I had a heart condition as well when I was born. It’s been a long time and ive been 100%.

As was said technology has come so far sounds like worse case they operate and fix it.

I think things will work out for you OP.

View Quote

They definitely said valves all look great and heart looks good so if they operate it’s on the artery. They said it’s basically a patch to close the hole up which seems far less intrusive than many here

Posted: 8/16/2022 6:36:33 PM EDT

[#40]

Quote History

Quoted:
Can't offer any help with medical questions, but I can and will pray. May we know her name?

View Quote

Madison

Posted: 8/16/2022 6:37:34 PM EDT

[#41]

Quote History

Quoted:
Aorto-Pulmonary window refers to the view they can see on the echo scan…

A PDA can sometimes close on its own, sometimes ibuprofen is used to help the process.

Let’s hope and pray it closes without needing surgery

View Quote

Thanks for the info. That seems to be the path we are on and what the docs think will happen. They basically say she just needs time and the oxygen will hold. Trying to read them it seems like they are thinking 3-7 days

Posted: 8/16/2022 6:39:36 PM EDT

[#42]

Prayers sent.

Posted: 8/16/2022 6:40:02 PM EDT

[#43]

All I can do is wish and pray for the best for your little one and your family.

Posted: 8/16/2022 6:43:25 PM EDT

[#44]

Prayers for healing, strength and peace.

Posted: 8/16/2022 6:44:54 PM EDT

[#45]

My sister was born with a similar heart condition, although I’m not exactly sure what it was called. She just turned 35. Had surgery at a year old.

I remember going to visit her in the hospital and her coming home with the “zipper” in her chest. I’m sure I had no idea how hard of a time that was for my parents.

OP, I hope your daughter has a similar positive outcome and I hope you and your wife have the strength to persevere through this difficult time.