Wesley has been an absolute rock star lately. I think I talked about how he was off CPAP but on high-flow nasal cannula, which is really a lot like CPAP, but a little more comfy. Well he is down to low-flow nasal cannula full time, and not only that, but he is down to 0.10 liters of flow, which is almost as low as he can go before they start trying him without oxygen support altogether!! That probably won't happen for a while, but we leave every possibility open for God. the other big change for Wes is that they have started to compress his feedings over a short time period. He had been getting fed over 2 hours, so his feeding of 70 ml is given to him consistently over 2-hours versus a baby taking a bottle in a 10-15 minutes (I really have no idea how long it takes to feed a "regular" baby, so that could be way off). He is fed over time to prevent any refluxing and then aspirating that into his lungs and setting back progress for weeks and weeks. Now that his lungs are getting strong and he needs minimal support from a respiratory perspective, it is time to start working on feeding...the last hurdle before he comes home. Anyway...they have been slowly weaning his feed times down, and they moved to a 1-hour feeding today, and he seems to be handling it well. Please pray that he continues to do so. If he does, they will try 1/2 hour, then basically a gravity feeding, and then a bottle. Talking about this all seems like a pipe dream. In a weird way, it is hard to picture the boys ever living in this house. We have become so accustomed to them being in the hospital that it almost feels strange to think about them being home. Hard to explain.
Now for some videos!! I was sick like a dog for a good 5-6 days and not able to get to the hospital for a whole week. That really sucked - no other way to put it. So, I had Kate take lots of little video clips with our digital camera just so I could see them move and make noise. She got some good ones. Here are a few of our favorites:
This is Max playing with his toys. Kate and I think he is a very smart little boy!!
And this is Wesley...this little guy really likes his pacifier!!
As the title suggested, there is a feeling that we are maybe climbing the hill and actually making some progress. For months any step up seemed to be followed by fall off a sheer cliff. But over the last 2-3 weeks it really feels like we are stepping on firm ground and moving forward. We are still cautious because of the rocky road behind us, but thankful for the way God has redeemed it into an amazing journey. I am reminded of the song by Jars of Clay called "The Valley Song" where the chorus says, "I will sing of your mercies, that lead me through valleys of sorrow, to rivers of joy." That really says it all. What a mighty God we serve.
I did want to mention that the boys had an eye exam recently, and both boys have mature eyes!!! That is such amazing news, and a true rarity for 24-weekers. Yet another way that God has answered our prayers in a way we would have never thought to ask. We so often prayed that they would not have ROP, an eye disease that effects so many micro-preemies, but I am not sure I ever prayed for the boys to have "normal" eyes. That seemed like asking too much, but that is why God is God and I am not.