Diagnosis

While Emma was in the NICU, my friend, Melanie suggested to me that Emma has something actually wrong with her anatomy. She never really bought into what the doctors and nurses were saying about Emma simply being premature.

Emma pointed out to me that Emma’s stridor (her raspy breathing, almost snoring even when she’s awake). Melanie suggested Emma might have laryngomalacia or tracheomalacia. Since I know pretty much nothing about anatomy, and even less about physiology, I often just listened to Melanie and tried to internalize it. I didn’t know what to do with that information.

Melanie, on the other hand, asked nurses on more than one occasion about the stridor. They gave her the same answers they gave me.

On May 2, as I was leaving the NICU from Emma’s 9:00 am feeding, I was stopped by the angel nurse, Lisa. She asked how Emma was doing. I told her the same. She said that she and one of her nurse friends had been talking about Emma. She said they were concerned that something else was wrong with Emma, not just her being “premature.” She suggested Emma might have something going on in her throat. Ugh—yah—exactly what Melanie had brought up. Lisa said I might consider asking to have Emma scoped up at Primary Children’s.

As she was finishing her conversation with me, one of the doctors passed by. I stopped her and started a conversation with her. She said she thought that my calculations on Emma’s conception were probably off (which is crazy, since my body is almost like clockwork when it comes to my cycle) and that Emma was simply a lot more premature than I had thought. She said that this prematurity was Emma's problem. She said that Emma had done so poorly the day and night before that I should probably prepare for Emma being in the NICU another week, maybe even a couple weeks. (This was the comment that pushed me over the edge, by the way.)

I asked this doctor about Emma’s throat, about there being something actually wrong with her anatomy. The doctor said, “Yah, there might be. She probably has tracheomalacia. That will eventually clear up on its own as Emma gets stronger.”

And that was it. No further talk about scoping Emma to find out for sure. No further talk about any of it. She just left me feeling like crap and telling me to wait it out.

Two days later I brought Emma home.

At home, Emma seemed happy. But, she still wasn’t growing. She was good for her oxygen levels some days. So we would take her oxygen off. She was fine for a day or two, and then she would start getting lethargic, she would eat less, she would wake less, and she would struggle noticeably more with her breathing. I’d put her back on the oxygen.

Our pediatrician, Dr. De La O, wasn’t there for every appointment we had the first two weeks at home. So we had appointments with others in the office. One pediatrician heard a heart murmur in Emma—which no one in the NICU had even recognized. Dr. De La O heard it too when I mentioned that finding.

Dr. De La O has been concerned about Emma’s up and downs with oxygen. She’s been concerned about the lack of weight gain. And she has been concerned about Emma’s stridor. Dr. De La O referred us to Primary Children’s to meet with an ear, nose, and throat specialist and also a cardiologist. We decided that Emma wasn't growing because she was wasting her energy on breathing and on pumping her heart.

When I called to get an appointment with an ENT, the “first” appointment available with any of them was July 1. SIX WEEKS FROM THAT DAY! Six weeks? Seriously? Melanie said Emma could not wait that long. She somehow managed to get us in a week later. That was three days ago, May 26. The cardiology department called me and set up an appointment. That appointment is set for June 1.

Melanie wasn’t scheduled to work on Thursday. But, she asked if I would like her to go with me to the appointment. I said, “Yes.” So she was my angel companion and went with me.

We met with Dr. Muntz. Melanie was glad Emma was being noisy so Dr. Muntz wouldn’t think we were crazy. And yes, Emma was really noisy. (Poor girl.)

After answering a list of questions with the nurse, Dr. Muntz finally came in. He asked us some more questions about Emma. Then we started with the scope. The procedure didn’t take very long, but it sure left Emma tired, sad, frustrated, and breathing heavily.

Dr. Muntz sent a teeny tiny camera up through Emma’s nose and down her throat. We could immediately see there was a problem: laryngomalacia. Melanie told me later that she had never, in the ten years she’s work at Primary Children’s, seen a case as bad as Emma’s. Dr. Muntz took one look at it and said we’d need to do surgery.

Even I, a lay person when it comes to anatomy, could see the problem. There is so much excess tissue covering Emma’s airway that she is having major trouble breathing. When she was full-on crying, the airway was barely open. The tissue, when calm, was overlapping. It should be not there like that at all, and especially not touching.

Apparently Dr. Muntz would have tried to put the camera down farther to see if there was any other problems, but the tissue was blocking the way.

Melanie then helped Dr. Muntz do a swallow study. Emma is definitely refluxing as the epiglottal is not as sensitive as it should be. It should have made her flinch and cry more when Dr. Muntz poked her with the camera. She only kind of flinched with the poking. When we fed her some formula dyed blue (VERY blue), some of it pooled right above her epiglottal. That’s a concern. We hope she’s not aspirating her food.

After we finished torturing poor little Emma, I wrapped her in a blanket and held her close. I gave her a pacifier and did my best to sooth her. Dr. Muntz tentatively scheduled us for surgery this coming Friday, June 3. He said he wants to wait until cardiology confirms Emma’s heart is well enough to go under general anesthesia. He said that he will not be able to perform Emma’s surgery himself as he will be out of town. But, he’s confident in his colleague.

So, yes, Emma needs surgery. This is not something she will just grow out of. This is not something that can be fixed by medications. This is something that if we don’t immediately resolve could be seriously dangerous to our little girl. This is something that I am so grateful to finally KNOW and know that there is an answer for.

I’m peeved that the NICU doctors were so unconcerned about this. I recently read the discharge notes from one of the NICU doctors. She put on there that Emma had resolving tracheomalacia. Not resolving. Not tracheomalacia. I wish the doctors would have paid more attention and that they would have been more aware. How much money could have been saved if a scope had been done at week one, even week two? Well, on average, the NICU bill was $3,100 a day. You do the math.