If you are reading this post, you are probably experiencing the same things we experienced when we first heard the word Laryngomalacia. What is this? When should we trust our instincts? Where should we turn to? and How do we cope with all of this? Yes, its an emotional roller coaster, so read this post to learn how we went from a world of unknown to a world of much known!
Have you ever heard:
- “Its normal for babies to choke on amniotic fluid”
- “Its normal for babies to be congested from amniotic fluid”
- “Your just not nursing your baby right”
- “Your just spoiling your baby”
- “Its normal for an oxygen monitor to beep a lot”
That may be true of any normally healthy new born baby, but not when it weighs on your conscious that something just isn’t right! If it doesn’t feel right its not!
June 12, 2015, was one of the best days of our life as we finally were able to meet our second child! A few hours after he was born, he choked and was immediately suctioned, but it was “normal”. He wouldn’t latch, but it was “normal”. He wouldn’t stop screaming and crying, but it was “normal”. He flailed his arms in his sleep, and he made weird noises, but it was “normal”. For everything I knew was wrong, the doctor or nurse had an excuse for why it was “normal”.
I NEEDED REASSURANCE, so at my son’s 2 week well baby check, I brought up my concurs with his PCP. He was quickly admitted to the NICU for stridor (noisy breathing) and sleep apnea (not breathing). The next day we were sent to Children’s Hospital, where he was diagnosed with Severe Laryngomalacia.
At 2 months old, he had dropped weight from 90% to 20%. which meant he needed surgery. Now we really started to worry as we were advised of possible tracheomalacia and bronchiomalacia. That’s when we had no idea what to do, who to turn to, or how to deal with all the crazy emotions.
Now he’s almost 2 years old. He’s been diagnosed with other related conditions, he hasn’t slept through the night since he was born, colds put him in the hospital, he has been put under for 2 surgeries and 4 scopes and will be having his next scope in 6 weeks. He is on several expensive medications. He sees a plethora of doctors and he goes to therapy 3 times a week
…and just like my instincts told me…its NOT normal!
This whole journey had thrown us into “a world of unknown”, just like the Coping With LM Organization describes. We have been through the worry, we have been judged for everything we do or don’t do with him, and it has tested our mommy and daddy relationship, but there is nothing more that has helped us stay strong for our kiddo, than Coping with LM.
This has been an amazing support group for our family, and so helpful in educating us about this condition! The best part, your never judged for having a conscious that something isn’t right, or that your “spoiling” your kid. They have offered us many resources for doctors, feeding, and anything that is related to Laryngomalacia. When our son had his first surgery, it was on short notice, and they made sure that he received his care package before his surgery. Being able to quickly access helpful information in one place, and know people are there to help and listen, weather its your neighbor or someone halfway across the world, has made a world of difference in advocating for our son and making the right medical decisions. Coping with LM has help us transition from a world of unknown to a world of much known!