When a baby is diagnosed with laryngomalacia there usually is a watch and wait period.
This period is usually within the first three months of life and is
really to decide if doing a supraglottopasty is necessary.
We all have our wait and watch stories....
With S our watch and wait period was a total of 4 months. The longest four months of my life may I add. I watched my newborn struggle to breathe. I watched her lungs retract with every breath. I watched her stop breathing all together. Those "memories" I have from the first four months are forever engraved in my mind and heart. Although I would love to forget I know I never will.
Through those four months I waited for a doctor to help my child. I was told she probably didn't need surgery and by her first birthday the laryngomalacia would go away-I just needed to wait {looking back I wonder if that was the doctors way of telling I am crazy impatient...ummm}I waited and waited for some improvement.Then
the apnea monitor came into the picture, followed by the confirmed
sleep apnea, the severe GERD which had already done damage to my baby
within 5 weeks of life, the medication to control the GERD, the
retractions that would not go away no matter what position I put her in,
the cyanosis but most of all the left ventricular hypertrophy of the
heart. That was the reg flag. Our clue that this watch and wait period NEEDED to be over.
S was around 3 and half months when we found our current ENT. He scoped S and before I could read him my log from prior three months he looked at me and said, "your baby needs surgery...sooner than later." He then told me the watch and wait period was long over since the LM had now affected another organ-her heart.
To this day I feel extremely guilty about those first four months. I feel like she suffered and I watched her-I let her suffer... when in reality I was fighting the hardest battle I ever fought to get her the care she deserved because I knew deep down...she needed more. I also felt guilty because when I left the ENT's office that day I felt a huge sense of relief. Putting your infant through surgery should not make you feel good...but I knew it was the best thing for her. I felt guilty for feeling like that. Horrible I said yes to surgery... and ...relief because it was the best thing for her.
And now when I hear her laugh with out choking... I know very well... over and over again... it was the best.thing.for.her.
It may not have all happened the way I wanted it, how I wanted it...but it happened the way it was supposed to happen.
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My son is 7 weeks old and has already had his adnoids removed to "help" the LM. He did not do well coming off the anesthsia at all. They want to do the supraglottoplasty a week after the adnoid ordeal... i am terrified and havent made a decision yet. Would love some input...
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