I had hoped to write an update last night and fill everyone in, but I came home from the hospital completely exhausted and didn't have the energy to do much. It's amazing how just being in the hospital can suck you dry.
Our visit to the hospital was pretty frustrating in a lot of areas. Somehow they had a couple of Hope's meds in the computer incorrectly. They would bring her meds into the room to administer to her, and I would notice that they were the wrong amounts. It's a huge deal if you don't give Hope the right amount of blood thinners! She was almost given the wrong breast milk and other times it appeared they were going to forget to bring her feed at all. All that to say, I had to be on my toes the entire time we were there to make sure she got her meds and feeds at the right time and the correct amounts.
We had an echo done on Monday morning, Hope's heart function was still looking good. This is the most important thing and we were pleased to hear this. She still has clots and will continue on the blood thinners, we'll get a better idea of what's happening with the clots in Hope's MRI. In the afternoon we were seen by ENT (Ears, Nose and Throat), the doctor did another scope of Hope's throat.
ENT discovered that Hope's left vocal chord is completely paralyzed and that she has Laryngomalacia (a collapsing voice box). They believe that this is the cause of her stridor. We still don't have a conclusion as to why it was suddenly worse on the weekend. It could have been a bad case of reflux that brought on the increased stridor. The doctors have switched her reflux meds in order to see if this will make an impact. They are hoping that her voice box and vocal chord will repair themselves over the next year. If this does not happen, she'll be taken in for surgery to attempt a repair on the voice box. It's possible that her left vocal chord will be permanently paralyzed.
We're back at home with strict orders to return if she has another stridor episode. Please pray that her breathing will be strong and consistent and we won't have to bring her back in. ENT will take a look at Hope again next month and will see what's happening with everything.
The most positive part of this entire experience was Hope's oral feeds, they are getting better. We tried a new nipple at the hospital, it has a faster flow than the ones we've been using at home. Hope did so well with them and started taking 30mls a feed from these new nipples. This was super encouraging, please pray we'll be able to maintain this success at home and get her taking more from the bottle as we practice.
Thank you for praying us through our hospital visit!