Re: new traecheomalacia dx
Welcome to share. its 1am and im reading your story about baby Christopher whilst my Thomas is tucked up next to me stridoring away in his sleep.
My baby Thomas is now 10.5 months old and was diagnosed with laryngomalacia at birth. He has always been a really noisy breather so i completely understand why you are up at 4am worring about him. It has been a long and scary journey so far and i agree, nothing like listening to your baby struggle to breathe to freak you out.
Thankfully we are very blessed to have wonderful Drs who have been absolutley fantastic and looked after us beautifully. But even with their care and support, it is still us listening to him every day and night and worrying if his breathing is going to stop.
The laryngomalacia has cauesd sleep apnea and also has associated silent reflux which many malacia kids have.
Thomas wears an apnea monitor which alarma if he stops breathing for longer than 20 sec. He had quite a few instances of turning blue when he was younger. He had a sleep study done at 3 months to support it. The study found that his breathing was worse when in a capsule or bouncer as the position didnt allow him to extend his neck to self correct his breathing. From then on we always made sure that he could stretch his neck backwards and that helped alot. He was unable to breathe lying flat until about 4 months old and then he would just roll himself into a position which he could breathe in. But because of his reflux, he still doesnt manage lying flat at all.
thomas has a cot in his bedroom but he needs intervention so many times during the night that we found it easier to elevate our bed and have him in with us. plus its nice to cuddle him and be able to hear his breathing/refluxing.
My paediatrican suggested a technique to keep him elevated in the cot.... elevate the mattress with pillow or whatever... then get a big pair of nana undies and secure them to the mattress and slide the baby into the undies with legs through the leg holes. I never tried it but sounds good in theory. Apparently it works. I also did/ do tons of research on reflux and laryngomalacia. there is a wedged pillow called an AR pillow (anti relux) available. It is and elevated pillow in a wedge shape that has a belt to secure the baby into position. it looks great but Thomas was too old for it when i found it so i didnt try it. Look it up on google. it maybe helpful. Does christopher have reflux too?
Good luck with everyting. keep us posted as we will be thinking of him. YOu can read my early posts to get updated with our history.
The best advice i can give you is...
.try and remember that he is stilll a tiny little baby and not to get consumed with his extra needs. he will grow so fast that you dont want to miss it.
. find a paed/Gp that you trust and can have a good relationship with
.stay away from anyone who is or has been unwell as our kids are at greater risk (we have a 2 week rule. if youve been sick in the past 2 weeks then stay away)
. check with people before you meet up with them if they are unwell
. Educate yourself as much as possible and seek advice from others in this situation .This site is invaluable as other mums understand and give great support
.listen to yourself as nobody knows your baby like you. Fight, fight fight if you have to and be his advocate. hopefully you wont need to. but always trust your instincts
Apart from all of this, just love and enjoy him. My little boy is such a beautiful little soul. It may be comforting for you to know, that he sat up and crawled early and is almost walking at 10 months. He is slow with his swallowing but otherwise i a normal little happy baby who smiles all day long (and breathes loudly)
look forward to following your journey. let us know if we can help