Laryngomalacia? Anyone have any info?

[schoolmom07]

Ok, baby Sarah was nursing and we have made comments on how noisy she is anyway with eating, breathing, the fact that she chokes really easily and it has all been chalked up to "strong" let down but this evening when this happened I know it was something else. She choked, tugged off the breast, starts looking wildly around and I just knew something wasn't right. Then I figured out she was struggling to breathe. It seemed like forever but was probably around 20-25 seconds but I put my hand under her nose because her eyes kind of fixed and then she makes this horrible squeak and starts crying really hard. I almost had a heart attack! She hadn't been breathing the whole time and I was looking right at her! My husband was in bed beside me and was watching her too. He noticed something wasn't right either but we honestly did not have a confirmation that she wasn't breathing until she squeaked so hard! My husband then made the comment that it was like she was holding her breath. I went looking and hopefully won't get in trouble for posting this link but I need you all to go and look at the info, tell me what you think. Should I take her to the doctor immediately? They are open on Saturdays and Sundays which is tomorrow. She has an appt. Dec. 2 and I have been extremely fearful even before this because of her choking and at other times her seeming to gasp for breath but every time I bring it up to the doctors they kind of brush it off. I have worried that she will just quit breathing in the middle of the night. My anxieties have so been pushed to the limit. I worried about SIDS with my first but had no real basis to and the worry went away but not with Sarah...I am constantly up and down to check on her and she is in the room with me. Help Mama's I am so worried, confused and unsure of myself with trying to explain this to the doctors...
(The following link is for informational purposes only and for opinions on what I should do concerning my child. It is not intended to have others go to this site for any other reasons than those stated above. Thanks.)

http://community.babycenter.com/post...laryngomalacia

[2boyzmama]

<<hugs!!>>

Connor has laryngomalacia, tracheomalacia, and bronchomalacia. The laryngomalacia caused more concern when he was an infant, and the bronchomalacia is causing concern now. All three together made for a ver touchy first year, and puts him at high risk of respiratory side effects from illness since he can't cough effectively.

*MOST* babies with laryngomalacia have a benign case, and it only makes them breathe loudly (be ready to explain it to people who hear it if she's having a particularly loud day, I had strangers approach me about Connor's breathing when we'd be at the store).

But, as you're seeing now, it can also cause some swallowing problems. She is probably aspirating from time to time, particularly if you do have a strong let down. Aspirating sounds scary, but if it is exclusive breastmilk and is not too frequent, it is possible to keep her on oral feeds. If she aspirates more frequently, or starts showing signs of lung damage or infection from the fluid, then you will probably be told to pump and thicken the breastmilk to bottle feed to her (they'll do a swallow study to see what thickness she can swallow without aspirating). Severe aspirating sometimes necessitates a feeding tube, but it has to be pretty severe, and thickening has to not work.

In Connor's case, they wanted him on a g-tube (a surgically implanted tube directly into his stomach through his abdomen). I balked at that, and left the hospital with him then stayed awake for days researching like a mad woman. I tried thickening for a while, but he had to have it so thick that he couldn't suck enough to get enough milk, he'd tire too easily. With the help of some wonderful lactation consultants (locally and long-distance) we were able to keep him nursing at the breast. He'll be 3 in March and has only had 3 pneumonias, which is amazing considering how horrible his aspirating was!

I also remember the fear of SIDS, I used to lay awake just listening to him breathe, scared to death every time he paused. I don't think I slept for the first year of his life!! (he also had a bunch of other medical issues, though) His breathing was much better when on his tummy, it opened his airway and stopped some of the collapse. I also requested an apnea monitor for a while, that allowed me to sleep better.

SO...if it is malacia, it isn't an emergency, but because there could be other issues going on (aspirating, oxygen desats) you definitely should get her checked before her next appt. You should try posting over in the SN forum also, there are other kiddos who have malacia. Some were able to nurse, some had thickened feeds, some are tube fed.

If you have other questions, ask and I'll try to help!!

[schoolmom07]

Thanks 2boyz...well..threeboyz now! LOL! Can you tell me does he cough alot? Sarah seems to and are there times when it is worse than others? For instance, Sarah seems to have had a worse day today about the quitting breathing. Can you pm me your e-mail address? I have so much that I want to put into a post but it won't fit here I am sure....