Wednesday, December 18, 2013

Swallow Study and first time with solid food

Yesterday Anthony and I took a trip to a great local children's hospital. We had an appointment to get the Swallow Study done. I was actually pretty excited for Anthony to get it done, I had heard that it was interesting to watch. This is how it all went down:

We walked into a room and the doctor warmed up Anthony's milk I brought from home. She divided the milk into three separate bottles. In each bottle she put barium (a mixture to help the milk show up in the X-Ray). She also used my oatmeal cereal I brought from home to mix into the milk. Each bottle had a different amount of oatmeal cereal added, the first bottle had none, the second had enough to make it a nectar consistency, and the last bottle had the most making it as thick as honey. The purpose of this was to see what happened when Anthony drank each bottle. (If you don't remember from my previous post- we had to make an appointment for a swallow study because Anthony had been sounding liquidy when he was eating.)

After she mixed all of the bottles, Anthony was placed in a little highchair next to an X-Ray machine. Two other doctors came in the room, and the Swallow Study began. I fed Anthony each bottle, and we did it in order of thickness. The excitement I had felt before quickly went away after the first bottle. Anthony started with the milk that did not have any oatmeal added. As soon as he took one suck I heard one of the doctors exclaim "he's aspirating, he's aspirating.. take it out now!" It startled me, and I wasn't expecting something to be wrong. Up until this point, we have only really heard good news about Anthony health-wise... we've been very lucky. So, I guess I just kind of assumed that these results wouldn't have been any different. They then had me feed him the other two bottles, and said things like "he is penetrating, do you see that? Yes .. he is penetrating across the board." 

I had no idea what they were talking about. I was still a little shook up about how they reacted to him drinking the first bottle. Honestly, I didn't know what they meant when they said that he was aspirating, or penetrating. It was all a foreign language to me. All I know is that my baby boy did such a good job. He was patient in between the bottle switches, and kept a smile on his face throughout the test. Better than I can say for myself. I was a nervous wreck. I hated that I was there without Joe, because I had a feeling that I was going to get not such great news.

When the test was all over, one of the doctors took me into a conference room with Anthony. She took out paper and started to draw me two pictures. I am a very visual learner, so I was happy that instead of using doctor lingo, she took it down a notch to explain it to me on my level.  

In both of the pictures above, the pink represents the milk going down the throat. When Anthony was aspirating, the milk was going straight into his lungs... scary! When he was penetrating, the milk started to go towards the lung, but then bounced back out to where it was supposed to be. Even though the milk goes back into the throat during penetration, it runs the risk of trickling off into the lung since it is in that area for a short period of time. All of this seemed pretty scary to me and I was starting to get nervous for Anthony. She then brought up the risk of Anthony getting pneumonia from liquid in his lungs.

Once I heard pneumonia, my head started to spin. If you remember, Anthony was sick for a little over a month with what Joe and I thought was a cold. He was really stuffy, and had a nasty cough. Actually, he still is occasionally stuffy and coughs a few times throughout the day. Could he have the beginning of pneumonia?!

We talked for what seemed like forever, because I had a million questions.

-So, every time he makes that liquid noise when he eats he is aspirating? ... yes, most likely.

- Is that why he coughs too? ... yes.

-Did he ever not penetrate or aspirate?... no, he full on aspirated with the breast milk alone, and penetrated each time no matter what the thickness was.

-He only JUST started making those noises during eating when he was three months old. Why did we not notice it before? Has he been getting liquid in his lungs this whole time?- When babies are little, their throats are not fully "developed" (I cant remember the exact wording she used). When the babies grow, their throats grow and open more allowing for more room for the milk to slip through.

-Where do we go from here?......

She really didn't have an answer for that last question. We bounced around a few ideas and it started to sound like she didn't want him to eat breast milk anymore. I would have freaked out! She told me that we had to thicken his milk, but that the problem was breast milk dissolves the oatmeal a lot more than formula would. So, if we thickened it just a little... by the end of the bottle it would be way too thin for him because the oatmeal would essentially be gone. We left a message for Anthony's speech therapist so that we could all discuss this and come up with a solution together.

I think the worst part of the day for me was realizing that I could no longer breast feed Anthony. When I asked the doctor, and she told me no I had to fight back the tears. If I didn't, I would have had a full blown break down in the conference room. (I saved that for when I got home). I seriously lost it. I couldn't believe that the last time I had breast fed him was actually the LAST time I would ever breast feed him. It made my heart hurt. With the decision made that I was soon going back to work full time, I was scared that Anthony would forget who I was through out the day. But, I found comfort in knowing that after work I could come home and have bonding time with my son while I breast fed him. Looks like that idea is out the window. It is so true that you don't realize how much you like doing something until someone takes it away from you. I am honestly still struggling with the fact that I can no longer have those moments with my son. It's heart breaking. But.. I would do anything for Anthony, and if he would aspirate during breast feeding I would certainly never think of doing it.

Later in the day, they both made a decision to have Anthony's milk thickened to a honey consistency. They figured that if it started out really thick, by the end of the bottle it would still be as thick as nectar and he would never aspirate, just penetrate. It all sounded like a great plan in theory... but it was HORRIBLE to execute. Anthony took forever to eat his bottle. It was way too thick and he had to use so much energy to get it out of the little pin sized hole in the nipple. He was very frustrated because he was so hungry, and couldn't get the milk out. I felt like a horrible mommy. So, Joe and I decided to raise our spirits and try something new. I talked with his doctors today about the possibility of starting Anthony eating "solid food". (It was more like just really thickened breast milk with oatmeal.) They all gave us the green light. Joe I think was the most excited. He set up the high chair and mixed the food up.

Anthony actually did an amazing job! ... and so did Joe, he was a lot better at feeding Anthony with a spoon I'll admit! They boys had a lot of fun. But, after feeding we noticed that Anthony was aspirating a lot.. and it was scary. We think it was because he was taking in whole spoonfuls of food at a time, and that was a little too much for him to handle at once. Looks like we wont be trying that again for a little while.

Um, Dad.. what the heck is this thing in my mouth? 

hmm, it's pretty weird

What is that mom? You say I am a big boy when I eat this? 

okay, okay let me try again....

Hey! Wow guys, you're right! This stuff is awesome! I want more!
VIDEO- Anthony eating solid food for the first time 

The next morning, I had a break down. I didn't go into work because we still were unsure about how to feed Anthony. I spent the entire morning on the phone with doctors and therapists to try to solve our problem. I was just as frustrated as Anthony, and wanted my poor baby to eat! We decided that we were going to do a different method. We now feed Anthony one ounce at a time. This way we can put less oatmeal cereal in it, and it wont dissolve as quickly because we don't add it to the other ounces until he is ready to eat them. It is all trial and error, and fingers crossed that this way actually works.

No comments:

Post a Comment