I've been in touch with our favorite OT, Judy, off and on since LC left the NICU. We've made some adjustments to her feedings a little bit, but for the most part, she was still using the bottle like a champ and we were thickening her liquids since she was making some "wet" sounding noises during her feedings.
After her four month appointment, Dr. Straughn thought that we should have an outpatient visit with the OT just to follow up....her noises just weren't getting any better. Once we met with the OT, we found out I was depriving her of thickener - proud mom moment right there - NOT! I misunderstood the difference in the consistencies, and was giving her less than she needed. So, we changed that and the OT scheduled a swallow study just to see what was going on when she swallowed since she was making those noises.
On August 7th, I dropped AB off with Andrea and LC and I headed to Medical City for what I thought would be a quick evaluation and then we'd be on our way home. I knew the "worst case scenario" just because Dr. Straughn had gone over it with me. I didn't anticipate the "worst case scenario" being the case for Landree because she had been taking her bottle so well. I mean, look at how happy we were before the swallow study!
I was THRILLED because our favorite OT was the one conducting the study. We love Judy! It was a sweet reunion between the two, who hadn't seen each other in nearly three months. By this point, Landree was starving, because I couldn't feed her after a certain time, so she was ready to eat. Judy set her in the little chair to conduct an x-ray of her throat to see what happened when she swallowed. I didn't know what I was looking at necessarily, but once she swallowed the barium, I knew. I knew that what I saw was not good. All the liquid Landree took in, she aspirated. It went straight into her airway. Judy and the doctor freaked out a bit. They upped the consistency of the thickener to see if it made a difference. Nope. Not at all. My poor baby was silently aspirating her fluids. I had no idea. I felt terrible. I was shaking.
I could tell by the look in Judy's face...we were headed for an alternative way of eating. Probably a G-tube. I wanted to cry.
They got Landree a room on the pediatric floor, and it seemed like we waited for an eternity for somebody to call an order in for this poor baby to get some food!!! The nurse came in and put in a feeding tube. No, not again. I had some serious flashbacks to the NICU. How could it be? It seemed like we were taking five steps back, not leaping forward. My sweet baby girl who came home from the NICU eating like a champ, was back to eating through a tube. Bless her heart. I could tell she was agitated by it.
We waited forever for the doctor. She came in and told us we needed to try out the NG tube for a couple months, then we'd re-evaluate and do another swallow study to see if things had improved. I asked if it had to do with her syndrome. She said, "probably." I can't tell you how much I hate that response. No doctors have a darn clue if what Landree has is syndrome related or not.
So, I took comfort in the fact she wasn't going to have surgery...not right away, anyway. I just had to mentally prepare myself for learning how to put in and take out the NG tube myself. I was NOT looking forward to that.
Poor baby girl had had a long day. Luckily, her favorite people came up and brought her a sweet little present. Thanks, Lexi. She loves her soft, comfy dog.
We stayed in the hospital one night. Both Austin and I learned how to put the tube in and take it out just fine. So, they gave us a feeding pump, supplies and sent us on our way. So, now our sweet LC has a new accessory, but luckily her cuteness factor is enough to overlook it. I'm thanking God for His mercy and grace. Who knows how long she had been aspirating, and how thankful I am she didn't stop breathing, get pneumonia or breathing problems because of it. If this doesn't prove that she's a strong little cookie, I don't know what will.
Thankful for our little miracle. Love her so much!
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