Hannah has had an esophagram and 3 swallow studies. Both tests are fluoroscopic exams, meaning an xray is taken at 30 frames per second while she drinks flavored barium, which shows up on the xray detailing digestive structures and the swallowing process.
When Hannah was 6 days old, she had an esophagram, which checked for an atresia or fistula in her esophagus, and it was discovered that she had a stricture of the cricopharyngeus. A couple of weeks later, when she was about a month old, she had a swallow study to see if the dilation and Botox had been effective.
A swallow study is different than an esophagram because it looks at the functioning of the swallowing process including the palate and tongue and epiglottis. During a swallow study, a speech language pathologist or occupational therapist will usually administer barium in several thicknesses to find out what is the safest way to take food by mouth for a person with swallowing difficulty. The thicker the liquid, the slower it moves and the more it sticks together going down (or coming back up- it's also used for individuals with severe reflux).
You and I drink thin liquids such as milk and water and juice. Then there is nectar thickness, honey thickness, and pudding thickness. Pudding thickness is not a liquid at all, and you have to eat it with a spoon. Nectar thickness is hard to describe since I don't think I have ever actually seen nectar, but it's viscosity kind of reminds me of paint. Half nectar is halfway between thin liquid and nectar thickness. In Hannah's first two swallow studies in December and March, she never got to try anything besides thin liquids because she failed the study immediately by nature of not being able to pass liquids through at all past the esophageal blockage. It was obvious that it was not safe for her to take any food by mouth. This is why she had the NG tube for 4 months. So for several months we waited to see if anything would change in her esophagus; if the botox would ever take effect, or if she would somehow outgrow the narrowing (which as you call I thought was highly unlikely). The same thing happened in her swallow study again in March, after which the surgeon agreed to do surgery.
So on April 9th, Hannah had her post-op swallow study. While she had been successfully getting all her food by mouth for almost 2 weeks at that point, it was still important to document that the surgery was a success and make sure that she was swallowing safely.
Here's where we pause for a brief anatomy lesson. When you swallow, the brain sends signals to your mouth and throat to know what to do, and a series of muscular contractions takes place. Your epiglottis covers your airway and the entire voice box kind of moves out of the way for the swallowing process to take place. If liquid or food goes past the epiglottis and into your airway, this is called aspirating. If the liquid goes past the epiglottis and partially into the voice box but not down the airway, this is called deep penetration and it is dangerous. It is understood that babies who have deep penetration when swallowing will eventually aspirate. If the liquid goes into the epiglottis and back out again without going into the voice box, it's called shallow penetration. While not ideal, shallow penetration is considered okay.
Back to Hannah's swallow study on April 9th. She didn't fail right off the bat like in the first two swallow studies, but she didn't really pass either. There was no stricture anymore, which means the surgery worked! But within seconds of taking thin liquid, she aspirated and didn't even cough. This is called silent aspiration, and you would not know it was happening unless you were watching it on an x-ray. If you drink too fast and it goes "down the wrong pipe," you cough because you have just aspirated. Hannah didn't seem to notice and she coughed a minute or two after the fact. Even though her cough was delayed, it is still a good sign because she is learning that her airway needs to be cleared.
The next step was half nectar thickness, and she had deep penetration of the epiglottis. Still not safe. With full nectar thickness, she did okay and had only shallow penetration, and we are calling it a win.
Before we did the study, I had suspected that there was a little bit of aspiration happening because she often would have a wet cough after having her bottle, but I wasn't too concerned because she was not in distress or getting sick. Of course, had she been turning blue or starting to have a fever I would have stopped oral feeds immediately and put the tube back in. She has had an uncoordinated feeding pattern and an ineffective cough simply because she hasn't had much experience with eating. We will reevaluate in three months.
The current feeding protocol is to thicken Hannah's milk with gelmix to nectar consistency. The slower moving liquid will allow her more time for the brain to signal what to do, and those muscles will get stronger. She still gets the same volume and the same amount of calories. In order to thicken like this, you first have to heat the milk up to 100 degrees (thank goodness for the bottle warmer! How have I not had this before?), Then we add the powdered formula for calorie fortification and mix well, and then several scoops of Gelmix which is a carob bean powder and mix again. Then you have to let it sit for 5 to 10 minutes while it thickens to a nectar consistency. (especially hard to do with a hungry baby screaming at you). This process takes twice as long as just heating up a bottle, the bottles are harder to clean, and the gelmix is expensive. The first container that I bought was $23 and lasted exactly one week. This method, in addition to exclusively pumping for 5 months, rates about a 4 out of 10 on the "convenient" scale. I'm not entirely sure how we will ever go anywhere for more than 3 hours, because I would need to bring so much gear in order to prepare her bottle.
Last month our new challenge with finally having oral feeds was spitup. This month's new challenge with having thickened liquid is constipation! Within a day or two of starting thickening, Hannah started to have a lot of discomfort pooping, so now we have to add prune juice to her milk several times a day. We are still working on finding the right balance of all of these new elements. The milk has to be thick enough to be safe to swallow and the nipple has to have a fast enough flow. We had level ones and twos and it was taking her 30 minutes to drink a bottle and she would get frustrated that it was taking so long or get tired and fall asleep. Then we have to give her just the right amount of prune juice (also thickened) to help her poop. But not too much!
Although the new protocol is not ideal, we can handle it. I didn't even ugly cry when I got to my car after her study! We are glad she is out of the woods, off the feeding tube, growing, and able to take all her food by mouth. And even though the feeding tube is long gone, after having listened to that feeding pump beeping at all hours of the day and night for 4 months, we still hear phantom beeping all the time.
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| All ready for her swallow study. That's an x-ray machine on the right! |
