Swallow Test Take 2

Lincoln had his second swallow test today at 3:00 (actually this is his fourth but the first two were at the beginning of this journey and did not give us insight into when we could go home). My stomach was in knots all day and my mind was racing with "What ifs?" I tried all weekend to not get my hopes up and plan for the worst (no changes from last week) but it was too hard not to think of him coming home soon.

I am not sure if I have explained the process of the swallow test so I will try to briefly. They place him in this car seat looking seat and strap him in. The radiology machine is to his left and I stand in front of him with my "vest" on to feed him the bottle. (Shane and our OT, Amy, stand behind a clear glass wall to watch on the screen so they don't have to wear vests, hopefully all this radiation doesn't do anything major to me or Lincoln!) Anyways, the speech therapist stands behind me and mixes all the dye and hands me the bottle as the radiology doctor operates the machine. I have to keep Lincoln's head straight, keep his hands away from his face, and get him to drink from the bottle at the same time...pretty stressful! The speech therapist starts with just a bottle of breast milk and dye (not sure the technical name) and we watch the monitor as Lincoln drinks it. If he starts aspirating either to his nose or lungs then we add some of the Simply Thick to the consistency of nectar and try again. The speech therapist will try other size nipples (we were told to buy Dr. Brown's bottles because they are better, not sure this is true but they were more expensive!) to allow the flow of milk to change either slower or faster. Level 1 is the slowest and 4 is the fastest. Lincoln starts at a 1 and she tries out all different level nipples throughout the whole process. If he aspirates on nectar consistency then she goes to honey. This Simply Thick is just a tasteless, no calories gel that you can mix with milk to thicken it. There is nothing thicker than honey (at least that I know of) but you can make it honey and a half if needed. Each time Lincoln starts to drink one of the consistencies we (everyone but me because I am concentrating on Lincoln) watch and wait to see where it goes and they let me know if I need to take the bottle out or keep letting him drink. This is kind of irritating to Lincoln (I think) because as soon as he latches on, I have to take it away or turn it or something. So that is quick description of what Lincoln goes through.

Last week, EVERYTHING we tried from consistency to nipples went straight to his nose and large amounts! We were just hoping for some improvement. The plain breast milk still went to his nasal cavity but not as much and not as fast but still not great. Next we moved to nectar and the same results, little bit was going to the wrong place but not large amounts. Next was honey....at first (about 5 swallows) it was all going where it needed to be but it soon started to flow to his nose a slight bit. So she tried honey and a half and nothing went to the nose! She used a level 3 and 4 nipple which helped because this stuff is THICK!! I can not even imagine how Lincoln got any out of the bottle....I was proud! So the conclusion was made that he will start bottle feeding every other meal (he eats at 9-12-3-6 twice in a 24 hour period for a total of 8 feedings) with the honey and a half consistency to get him used to using the bottle again. The other 4 feedings will be through the feeding tube so he won't lose weight. Lincoln is supposed to be eating 65 ml (about 2 oz) at each feeding but the OT does not want to push him at the bottle feedings, so we will feed him until he tires out then the rest will be through the feeding tube. This made me thankful because it was pretty frustrating to me to watch him struggle with drinking this THICK milk and fall asleep and have the nurses commenting that is wasn't enough. The OT is hoping that he can practice this week with the thick "milk" then move to nectar and quickly get all the 8 feedings of 65 ml. Another swallow test was scheduled for 2 weeks from today but the OT wants to watch him daily and if she thinks he is improving with honey then we will have another test to see if he can handle nectar. As soon as he is eating all 8 feedings of 65 ml then we can take him home....it does not matter if it is thickened or not.

So that has been the news today. It is not the best news but it was an improvement from last week and gives us a plan to what we are going to do next (and not just wait...read previous post about my frustration with waiting!) Shane and I are hoping he catches on quickly to this whole eating thing and moves through his feedings quickly but again we are getting our hopes up. We were told that getting Lincoln to eat could be the hardest part of all this so we will see what this week holds. We are doing ok with this outcome because it starts the last leg of this race which we are grateful for but it is also a little disappointing because we could have one more week or two or however many it takes to get him eating fully.

Thank you for all the comments, phone calls, texts, thoughts, and especially prayers for today. They were definitely heard! I will keep you updated on how well Lincoln is doing!