Our NICU Journey

This may be hard to watch but I wanted to share with those of you who have followed along. Our sister in law made it for us. It was more difficult than I thought because I could feel a lot the pain all over again. It was also encouraging to have the reminder of how far God has brought us in such a short time. 

The Great Unknown

Once again life is just flying by post NICU with Levi. I am losing track of time but here is an update if anyone is still checking in. Last time we asked for prayer for Levi's Chapel Hill trip. Its really fairly routine but the reason he goes is so they can track his head growth and adjust his shunt as needed. This past trip he actually had it adjusted back because his head was growing a little under normal size. Its not something you would notice but it can make a big difference in his development. Right after that he started sleeping through the night for the most part. Levi is weighing in a heavy 13lbs 2oz which is great growth from where he started this year. His growth has slowed though so we gave him a calorie boost in his formula. Levi is now being weaned from his O2 and is doing very well. He only uses it eating and sleeping now with the hope to pull him for good in January. We are so sick of having him on leashes as we call it. We cant wait to get that O2 and the monitors out of our house! 

Now everything isn't always great news. We try not to complain about anything because Levi is such a huge blessing to us. I will be completely honest with you that Anjie and I really struggle sometimes with looking into Levi's future. We realize there is nothing we can do. We realize that its in God's hand. Unless you have been in a similar situation then I promise you can't fully understand. We actually stay positive most of the time. We both see good things in Levi's development to think he may escape serious issues as he get older. It is very hard though for us to not have doubts at times. Especially when doctors tend to lean on the negative side of things. Its really hard to sort out what is real and what is opinion. They throw around Cerebral Palsy and Mental retardation as if its not a big deal. I mean statistics show only 25% of micro-preemies have serious issues long term. We know Levi beat the odds just living to this point so...why worry right? Just know its not that easy and we do lean on God often for His peace. 

This week we took Levi to his developmental appointment at the hospital. The staff determined that he is only developmentally like a 3 month old baby. Levi is today nine months old. Thats a hard pill to swallow! Its understandable after his year and we knew he would probably develop slowly but here we are trying to internalize these things and push forward giving him all the love we can. The main reason he graded low is that he doesnt track well with his eyes yet. This is understandable to us understanding his surgery history. We actually have a specialist coming next week to start vision therapy with him. Hopefully that starts to help. We see the Eye doc in November so maybe he can give us more insight into what Levis vision may be. I hope this doesnt sound like we are depressed. It is the exact opposite. I am not sure how I could possibly love another person more than I love him. This experience has bonded us together in an amazing way. I just wanted to give an insight into the emotions we deal with. Thats the only way people may be able to understand what life is like for us right now. Maybe you will pray for us? Thats all we ask...