Laryngomalacia (literally, "soft larynx") is the most common cause of stridor in infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction. It can also be seen in older patients, especially those with neuromuscular conditions resulting in weakness of the muscles of the throat. However, the infantile form is much more common.
This is what Lola has. At her 1m appt, I brought up to her Pedi that I noticed she was "quivering" & "clicking" at home. I even recorded it on my phone so she could here. She wasn't doing it all the time then. She looked her over and said that it looks like it could be that her nasal passages are so narrow and with mucus build up it causes some obstruction and she would be ok... but to look for signs of distress, not breathing, less eating etc...
fast forward not even a week later and she started to get worse. Mila is a great eater and was downing close to 4oz bottles at this time. Even though Lola was littler she was still taking 3-3.5oz bottles with no problem. I was still giving them pumped milk as opposed to nursing because with Lola's slow weight gain I wanted to keep track of her intake. She was barely taking 2.5oz in a 30min time frame. I scheduled an appt with the pedi. She was still gaining weight from the previous week, but not as much as I liked. She was 7lbs 10oz at 1m and then 8lbs 2oz at 6weeks. I went alone with Lola. Ava & Mila stayed behind with my mom. This was my first outing without the whole crew and it felt lonely! I'm not going to lie... it felt weird not showing people my twins. I realize most people aren't as amazed by one tiny baby as they are two with a toddler big sis.
When I was telling my pedi my concerns... I started crying the moment I told her she wasn't eating enough and I knew something was wrong. The noises were getting worse and although she never "turned blue" I could tell she had moments of struggles. Its the more heart breaking thing... she was wearing herself out to eat, so she wouldn't take so much and since she was so worn out, she was almost too worn out for the next feed. Dr. C said its probably Laryngomalacia and that she needed to see one of the ENT's at Akron Children's Hospital. That was on a Friday and they got me in at 8:15am Monday morning. Our little family of 5 made the trip together. We got called back pretty quick. We spent more time with the nurse, & nurse practionioner (NP) than the doctor, but I know thats the norm. We talked about her issues and then we went back to a procedure room so they could do a scope.
I thought I'd had my share of tears watching your child getting poked and prodded when Mila was in the NICU for 24hours. I had to sit in a chair that you'd be in to get your teeth cleaned... I had to hold Lola and hold her hands tight against her chest. She didn't even try to resist me and that immediately broke my heart. I realize that your children have this immense sense of security and trust for their parents from day one. They know you're there to love and care for them no matter what... I couldn't even look down at her. The nurse held her head against my chest, she winced to the right in protest and I could feel the tears well up inside. The NP had the scope which looked like a piece of spaghetti wrapped in black tubing with a light on the end. I never watched them insert it, but with the way Lola screamed at the top of her lungs, I knew when it happened. I couldn't even look at Marcellus who was facing me, holding Ava. I just had my head leaned back against the head rest watching the monitor of hte scope. It seemed like it took forever. I could feel myself fighting back the tears... why? Why fight them back? Its pretty obvious you're trying not to cry with your lips folded back into your mouth as tight as can be and your body is heaving up and down. They got what the needed and took it out.. she only cried a few seconds after and I finally let my tears fall down. She looked back at me and I hope she could feel the pain in my eyes that it wasn't something I wanted her to go though. Although she probably was thinking... what the hell was that mom, just give me some damn milk, before she shut her eyes and went to sleep.
We watched the video from the scope in slomotion. It was pretty amazing to see how the voice box works. The movements inside were in perfect harmony with the noises coming out. Dr. M diagnosed her with mild LM (I"m not writing that word out anymore). In severe cases the extra flap needs to be trimmed for children with major obstruction. Apparently this is very common, although that didn't make the process any easier. He said that we needed to go back to feeding her less ounces more frequently... that instantly qued up the newborn phase, but I was ok with it. He said there is no need for surgery at this time and we go back Dec 6th for a follow up. The goal is that she out grows it, which is another reason why its so important for her to gain more weight. That was 2 weeks ago and she still makes the noises, so if she's going to outgrow it, it clearly will take awhile. Marcellus & I have come to be used to it... we forget that other people aren't aware or know that its "ok", so there is ALWAYS a mini freak when someone else is holding and/or feeding her. Trying to explain to someone that its "ok she's making those noises, she is breathing, just not 100%, but she is and she is ok"... they look at you like you're crazy and that CPS will be on line 2. She can't lie flat to sleep right now, which is fine by me. They both still sleep in their rnp next to me in our room. Lola is SO LOUD at night so during moments when she isn't noisy it sets off a trigger in Marc & my head that something is wrong... but there isn't! I have noticed there are moments it doesn't happen, but it still scares the shit out of us when she's quiet.
So all we can do is pray that at her 6week check up with the ENT in Dec that its gotten tons better and she won't need surgery. I can't stress and cry about things I can't control, I can only love her, feed her and give her everything else she needs and wants.
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