Wow, this blog is handy for updating the family all at once! I have to say, this just might be my favorite part of the internet- it's almost completely eliminated the need to actually speak out loud to people. I know some call that a bad thing... I think it's fabulous!
Anyway, onto Miss H. After over an hour of fuckery because some brilliant person lost the order for her test, we finally got her back to radiology and she had her swallow test done.
I was given the opportunity to see a woman and her blind son interact- which may seem like a weird thing to say, but let me explain. When Harlow was born, we thought she was blind. She was like 2 weeks old and I was thinking her life was over- how can you live in a world where you never know the color of the grass or see the bunny hopping across the yard? I watched this woman help her son play with his toys and it hit me that even though I had thought at one time being born blind would have been a horrible sentence, this mom and son were put in my path to show me it wasn't a bad thing. She played with him differently than I play with my children, but different isn't always a bad thing. To show me that even when we assume to know where a path will lead us, until we walk it ourselves, we don't know.
So anyway, back to Harlow's test. Lonnie was the one to feed her the bottle of barium, because she takes a bottle better for him and he has much more bottle practice than I do! It was pretty cool for me, because I got to stand behind everyone where I could actually watch the test on the screen. The first thing they had her drink was a thin liquid barium, which shows up black on the screen. We watched her little tongue work to get the liquid out and then she'd swallow. I've never seen one of these tests done before, so I had no clue what I was looking at- but even I knew it wasn't right. The liquid would attempt to go down one side of her throat, then get pushed out and over to the other side where it would go down. Next they gave her something a little thicker and without hesitation it went straight down the first side, and she started to choke and gag.
Basically what this means is that anything with a thin or only slightly thick consistency is being aspirated right into her lungs (which was the "first side" I was seeing on the xray). They also gave her pudding and a cookie, which I think were ok, but those were harder to tell (at least for me, who had no idea what I was looking for)
The official word for it is dysphagia. Basically it's a general term that means "swallowing disorder". They said this explains why she isn't gaining weight properly- because she knows it's not safe to swallow. All this time, I just thought she didn't have a big appetite- poor baby is probably always hungry, but afraid to eat! How horrible is that? Apparently hers is fairly severe but we've been super lucky because it can cause all kinds of lung infections and she's barely ever been sick- and never with anything in her lungs. Lots of things can cause it, but sometimes it's a condition all by itself. We'll have to have some more tests done to figure out what exactly is going on.
Moving on to how we manage it though. This is the part that really sucks and I'm really struggling with. As of right now, she is not allowed to eat any finger foods. The only foods she's allowed to have are thin purees. They gave us this thickener stuff that's the consistency of honey that has to be added to every liquid she drinks. This means 2 things. First, the bottles she normally uses are no longer ok, because she can't get this thick stuff through the nipple- we have to use special bottles. Second, they want me to stop breastfeeding her because obviously there is no way to thicken that. I don't know what to do about that. I'm actually really devastated over it, and not quite able to articulate why. I'm going to have to think on this one for a little bit and then speak to the nutritionist. I can start pumping full time, but I already hate the once a day I have to do it at work, and I don't think she's going to be willing to take a bottle from me... Ugh, this is starting to feel kind of overwhelming and I have so many questions rolling around in my head.
All things considered, I know it's not BAD news, it's just news I wasn't expecting. And somehow in my twisted mind, this all wraps up with seeing the blind boy in the waiting room. I really feel like he was a sign, we were put in that room together for a reason; I was supposed to take something away from that experience... I just can't quite place my finger on WHAT.
Jen, if you're up for some grandmotherly opinions, here goes. You were put in that room with the blind boy so the universe could show you there are worse things in life than what you are dealing with. Second, as a Mom (and I know you know this ) we make sacrifices all the time for our children. I can tell you that never stops, no matter how old the children are. So the most important thing is for Harlow to get nutrition so she can become healthy. As a long time Mother and Grandmother, there have been lots of times when what I wanted or needed was not paramount to what a child or grand child needed. I think it's just part of the deal. The minute the first child is born, our life becomes what is best for them - not us. Sometime it sucks, but that is the reality. Love you a bunch, Gramma.
ReplyDeleteI couldn't nurse my twins for long because they were both born tongue tied, and premature. They were fed with an NG tube and did not properly learn how to latch until they had their tongues clipped. I was forced to pump all their meals,p couldn't keep my milk up, had to stop when they hit 4 ounces each. It was devastating and I feel like someone stole a right of passage away from me. It makes me want to go through the horror of pregnancy again, just so I can nurse that baby...sad, but that's how I think at times! I'm sorry your baby had the dysphagia, its horrible, and with it, that thicket crap is a necessary evil, unfortunately. Its expensive, and kind of reminds me of gelatin in powder form. Good news is, she will definitely have more meat on her little bones with eating more of her food! I'll be praying for you guys!
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