September 2013 Moms

Lurker, but wanted to share my LO's health story (long)

PlariosPlarios member
edited November 2013 in September 2013 Moms
Hello ladies,

I have been an extreme lurker. I am a FTM and I downloaded TB in the end of my 1st tri and love to read all the stories, questions, and recommendations. My DD was due on 9/28 but was born on 9/13. This will be long, sorry.

I wanted to share my LO's story because my baby's breathing was always noisy and fast from birth,
And because her pedi kept telling me it was normal. As the weeks went by, the stridor was progressively getting worse. I was in and out of dr and hospital visits. They were not concerned because she didn't have any blue spells, no vomiting or diarrhea, she was gaining weight, her oxygen level was always 100%, and she would never have a fever.

She was obviously in distress because she wouldn't really sleep, she was having mild to severe retractions, and none of the medicines that were given to her seemed to work for long time, they would only suppress her symptoms for a little bit.

Within a span of a month, She was misdiagnosed with croup, and I kept pushing her pedi to find the true cause, since they initially thought it was just a floppy airway as well. Finally she referred me to an ENT specialist where they did a bronch, and found that my LO actually had a benign tumor (subglottic hemangioma) rapidly growing in her trachea, which was already blocking 85% of her airway. After the bronch, we were sent to the Pediatric ICU, where she had a breathing tube and feeding tube in for 4 days while they tried to bring the tumor down in size. She will continue to take medication for the next year and half and will have to go under another bronch around that time to make sure it's gone or close to that.

I just wanted to share my story with you ladies, because I knew something was not normal and I did not take no for answer. Thank you ladies for your time :)

ETA: I am on mobile, I did do paragraphs, I hope it shows up. Edit: for typos

Re: Lurker, but wanted to share my LO's health story (long)

  • Our daughters share birthdays! Friday the 13th babies :)

    Sorry to hear how difficult it must have been going in and out of the hospital but I am glad you did not take no for an answer, Way to go!!
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  • So sorry you've gone through all that. I hope this treatment will help your daughter!
    Lilypie First Birthday tickers
     
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    Toby, my furry baby
  • So sorry you had to go though all that to get to the root of your LO's issue. She's a cutie pie and I hope things are better from here on out!

    BFP: 1/17/13 EDD: 9/20/13 Dalenna Rose Born: 40 wks 4 days 9/24/13
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    FTM to my sweetpea Miss D.

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  • Wow. I'm glad that they finally diagnosed the tumor before it had grown even more! What a scary beginning... I hope the medication works & the tumor is gone at the next scope!
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  • Thank you ladies for the reinforcement, I felt sometimes the doctors thought I was exaggerating since I am FTM but that's in the past and now she is getting the right treatment :)
  • Sorry you've gone through all this- I'm glad you were so insistent on getting the right care for her. I hope the treatment continues to work.
    BFP #1 - Mango - 6/11/12, EDD 2/22/12 Natural MC 7/15/12
    BFP #2 - Nacho - 10/14/12, EDD 6/20/13, MMC 8 weeks, D&C 11/16/12
    All testing shows both H and I are perfectly normal. Baby Nacho had triploidy. 
    Back to normal business December 2012
    BFP #3 - Froggy - 1/15/13, EDD 9/27/13 TEAM GREEN
    It's a girl! Alice - Born 9/20/13, 8lbs 2oz

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  • I hope the medication eliminates your daughter's tumor and she makes a full recovery. You are a strong momma and I'm glad you persevered to find out what was causing her breathing issues.

    My DS was also born on Sept 13th. It's amazing that they are already 11 weeks old today.

    imageimage
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  • Good for you for listening to your instincts! My DH got bit by a mosquito when he was 10 and had a fever. When his mom took him to the dr he was misdiagnosed with a bladder infection. He ended up having west nile and slipping into a comma for 3 months which resulted in scar tissue on his brain causing him to have epilepsy ever since. 
  • Good for you for listening to your instincts! My DH got bit by a mosquito when he was 10 and had a fever. When his mom took him to the dr he was misdiagnosed with a bladder infection. He ended up having west nile and slipping into a comma for 3 months which resulted in scar tissue on his brain causing him to have epilepsy ever since. 

    Thank you @smlowe9311. I am sorry your DH had to go through that!
  • Good thing you pushed for a closer look and glad things are looking up for her!
    Boy 10.6.13
    Labored at freestanding birth center using hypnobirthing techniques
    Delivered via csection
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