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UPDATED: Thoughts/prayers - meeting with pediatric cardiologist

cathiehcathieh member
edited September 2015 in September 2015 Moms
Sunday morning our third little dude (Remington) was born. The nurses checked him over and thought they heard a murmur. He was seen by a NICU dr who said he did hear a murmur but that they would re check it the next day after 24 hours. So Monday morning the dr still heard the murmur and they ordered a echo to be done. We spoke with the dr last night and they said he has: Pulmonary Stenosis and Ventricular Septal Defect.

All we know is he has a small hole between the 2 lower chambers of his heart and the valve that sends blood to his lungs is too narrow. So we are getting discharged today and then have an appointment right afterwards to meet with a pediatric cardiologist. Hopefully should have more answers today.

If you could keep our family in your thoughts and prayers we would appreciate it.


UPDATE
We had our cardiologist follow up today. They did another ultrasound and got a better measurement on his valve. It's 4mm and a normal newborn is 12-14mm. His oxygen saturation was good. Also the tissue outside the valve has started growing more since last week. So as a result he is having us meet with the surgeon on the 24th. He didn't want it to be where we come in on a Tuesday and then meet with the surgeon Thursday and then have surgery Friday so he's having us meet with him now so we aren't overwhelmed at the last minute but he also doesn't think we will make it to the original goal of 2 months old. We go back to the cardiologist again next Wednesday to see if there are any other changes.
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Re: UPDATED: Thoughts/prayers - meeting with pediatric cardiologist

  • sarareginesararegine member
    Sending you sbd your family lots of prayers momma. We had a heart murmur scare with my first born but I can't imagine what you're going through but your Remington is a fighter and he has an awesome momma. Hugs.
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  • melco19melco19 member
    Sending lots of good vibes your way. My first born has a small murmur.

     

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  • LouLouLoveLouLouLove member
    Sending lots of positive thoughts your way. If it helps, my nephew was born with a murmur, pulmonary stenosis, and a hole in his heart. The hole and the murmur have resolved themselves (which is apparently common) and he gets yearly checkups to monitor the stenosis. He's 3 now and it has never thickened, though they do know they'll have to put in a stent eventually. My sister was so worried he would be a sickly kid when he was born, but he is the most rambunctious, wild kid ever. It has not slowed him down for one second.

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  • cathiehcathieh member
    Thank you so much for all the positive thoughts. @LouLouLove thank you for the personal story. That really helps.

    Tricky thing too is hearing it all from a dr you can't really understand because of his accent :-/
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  • monicaPmonicaP member
    Lots of prayers. My oldest had a murmur/small hole in her heart that resolved itself after a year. Hope you have similar results. Positive thoughts heading your way.
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  • littlemama1227littlemama1227 member
    Sending positive vibes!  My mom had a heart murmur from birth and also had a valve issue.  In those days, they didn't really know what to do so she wasn't allowed to exercise or do gym or ride her bike until she was 15.  She still has a SUPER funky heart rhythm, but the good news is she is 67 and going strong!  Hoping your little one is a-ok and will also be going strong just like my mom!
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  • rachelkawesomerachelkawesome member
    I don't have any personal experience with this, but good luck to you and your little guy!
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  • madismom12345madismom12345 member
    My daughter was born with a medium size VSD and was monitored for her first year before they decided to close it with surgery. She was in and out of the hospital in 4 days and it has never slowed her down. She is the most energetic kid ever! Hoping for the best possible outcome for your LO, but just know, even if they need intervention, there are many success stories and lots of kids living with CHDs. Hugs!
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  • cathiehcathieh member
    Thank you for the thoughts and prayers. Ended up being a 3 hour appointment. He has a whole in the wall between the left and right side. I guess based on the size it's too big to grow shut. Also the valve that goes from the heart to the lungs is constricted and the outside of the valve has muscle and it should be straight but his is growing shut. So we don't know when but he will need open heart surgery to fix all of it. We have to go to the cardiologist weekly and they will assess how things are progressing and then when he says its go time we have to schedule surgery with a pediatric cardio thoracic surgeon. Thankfully a hospital 30 min away is ranked A by him.
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  • rebeccabloomwoodrebeccabloomwood member
    Keeping you and Remington in my thoughts.
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  • ktbkittenktbkitten member
    We'll all be thinking about you and your LO. Please keep us posted. 
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  • adtaylor2015adtaylor2015 member
    edited September 2015
    Thinking of you and your sweet boy!
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  • kaybee03kaybee03 member
    Thinking of you! I believe my cousins baby had the same issue and at one year, is really doing amazing! You would never know! Stay strong!
    ----------------------------
    BFP#1: 01.06.2015 ... Baby Boy Due Date: 9.14.2015 FTM! :)
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  • GeorgiaDottieGeorgiaDottie member
    Sending lots of prayers

    33 years old, Married Oct '11,

    Summer '14: Diagosed with hypothryoidism, pollup, LPD, Low AMH, strong FSH.

    BFP: 1/22/15. EDD: 9/23/14. Rainbow baby!

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  • lnds30lnds30 member
    Sending prayers and positive thoughts to your family! Thinking of your sweet baby and hoping for the best possible outcome!
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  • tiaunnamtiaunnam member
    Prayers are with you and your family x
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  • cathiehcathieh member
    Thank you so much for all your kindness. We still feel in shock by everything. I think for me the hardest is the unknown since now we are at a "wait and see" time.
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  • str13str13 member
    I'm so sorry momma! I'm sending positive vibes your way. That's such a hard thing to have to deal with. I agree that the not knowing is the hardest. S has a diagnosis that can resolve or can cause blindness. I think I could take my sweet girl being blind, if that's what I knew would happen. It's the huge window of possibility that I'm driving myself crazy with.
    As always, Google is NOT your friend. Any positive story won't take the fear away, and any negative story only makes all new fears!!
    I'm so sorry that you're family is having to go through this, but it sounds like you're in the hands of a wonderful medical team!!
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  • cathiehcathieh member
    I posted an update above. Thank you all for your thoughts and prayers.
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  • str13str13 member
    I'm so sorry @cathieh !! That's so stressful. It sounds like you're in a wonderful place that can take care of little Remington! I'll be keeping you and your family in my thoughts. Thank you for keeping us updated!
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  • meg11287meg11287 member
    sending thoughts and prayers your way, be strong!
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