Take My Breath Away

I had a completely different blog post ready to upload over the weekend. I meant to proofread it but forgot, which is good because something happened yesterday that just completely took my breath away and pretty much was more important than what I was going to write about in my original post.

You see yesterday when the doctors gathered around Landon to discuss his plan for the day, his oxygen alarm kept going off. Instead of going off because he couldn't keep up his oxygen levels, it was going off because his oxygen was too high since he was breathing so well.

His nurse nonchalantly asked the doctor if she could turn his oxygen off. He agreed and they just turned it off and continued rounds as if a MIRACLE hadn't just occurred. So I present to you pics of baby who was never supposed to be born, was never supposed to have functioning lungs, a baby who can breath without any breathing support. God does listen to prayers, he just does stuff in his own time. Regardless of what happens from here on out, we got our miracle. We have the world's most gorgeous miracle baby (I know I am biased, but you have to admit he really is a handsome baby, worthy of an Anne Geddes portrait!)

Landon has had many visitors from the doctors and nurses who have participated in his care for the last 4 months to see the amazing feat of him breathing without support. It is so nice to interact with him when he is so much more portable without the oxygen prongs. He loves to be held and fed a bottle. He cries when I put him back in bed, making it so hard to ever leave him. He is a snuggle bunny!

We did have a few bumps this week as well. He is tolerating his breast milk, but is having trouble absorbing much of it before it 'dumps' into his ostomy bag. This is expected because the portion of his intestines that the original hole occurred is pretty high up in the digestion tract. Since most absorption occurs in the lower portion of the GI system, it makes sense that so much is coming out of the top half. They are trying to 'refeed' the output into his lower intestine but cannot do it as fast as he is dumping it from above. This is leading to him losing weight and nutrients. The doctors continue to try different medicines to help with absorption, but haven't found the magic bullet yet.

From a practical perspective, the increased output causes his ostomy bag to fall off, making a major mess and creating increased infection risk with Landon getting his hands in the output and then in his mouth. It is so frustrating dealing with this, but we are so lucky to have some awesome nurses who assist with this. One in particular, Paula, is always the first in line to help with Landon's bag. This is an unpleasant job that most people would run from, but Paula truly enjoys doing it and Landon (along with his parents) are always happy to see her!

On top of this, Landon's liver function tests are poor and continue to get worse. This is the result of being on the nutrient fluid TPN for so long before he could tolerate breast milk. It can take many weeks to months for his liver to recover, made even harder by his lack of ability to absorb the medications that could help. As the surgeons would prefer for his liver to be in better shape before surgery, this is just another setback.

Poor Landon also had to deal with an eye exam this week that showed the blood vessel problem has returned to the inner corner of his left eye. The rest of his left eye and his right eye look good, so the eye doctor decided to try to give Landon another injection in the left eye. This was a little scary as the injection is a very new medicine that has no information about the side effects of multiple injections. It is still preferable to the alternative of potential eye surgeries and blindness, but it is just another reminder of how the choices we make as parents today could have lifelong consequences to Landon.

Regardless, I am still going to focus on the miracle that God gives to us in every breath Landon takes on his own. I pray for God's direction in making decision for Landon moving forward. We hope to speak with his surgeons soon to get an idea of the plan for his surgery, but also know that sometimes we have to let go and let God (as my mom would say).