I received this email from my very good friend, Lisa, and it was such an encouragement that I thought I would share it with you. Lis, hope you don't mind!
Regarding "tracheo malasia":
Welcome to my world. That is exactly what Justin has.
Don't you just love the "HONK"! Justin really struggled in the beginning with it, but I promise it gets better. Often when he would start the sound, I would hold him in my hand, on his stomach, face looking at the floor. This is what the doctor taught us. The from part of the neck is the floppy air way, so if you have that hang down it IMMEDIATELY opens back up. It worked every time. He slept in our room for 6 months. He still has it at 4 1/2 years old, but it only happens when he throws a screaming fit, or has alot of coughing, and is forcing it to work hard.
Doctor says it is not the norm, but not rare to have it last this long. Justin can control it himself now.
I think the more common time frame is around 2 years old. Hopefully Jack will follow that pattern.
I am glad you have your mother-in-law. We went to the ER and then to the pediatrician before we got a diagnosis.
I know how scary it is, but I PROMISE it will not always be this way. Once he can roll over well, it gets alot better!
This email came on the discovery that if we put Jack on his tummy, the "honking" and troubled breathing stops. There is something about having him turned that way (facing down) that opens up his airway. I am SO pleased to report that he has slept almost ALL night now for TWO nights on his tummy--only waking up once in the night to eat. I am still feeling pretty sleep deprived from the last three weeks of no sleep, but I'm starting to get better with the "extra" sleep from the last two nights.
I know, I'm NOT supposed to let him sleep on his tummy. I struggled horribly with this. The bottom line is: he was having so much trouble breathing laying on his back, that the risk of his having an apnea seemed greater or at least as great as him laying on his tummy, so I turned him over. When I saw how much better he breathed, and how deeper he slept, I realized that this is one baby that needs to be on his tummy. So, mommies and doctors out there in cyberland, don't judge me too harshly, please! He is in God's hands, and if God wills that he should have SIDS, no amount of my staying awake in the night or turning him on his back will stop it. Instead, I believe that for us, right now, God wills that my baby get a good night's sleep and that I get a good night's sleep. So tummy it is. Thank you, Lisa, for the email and letting me know that I am not alone and that Jack will be alright!!