Today was a tough one. They say the NICU life can be a rollercoaster – the babies are so fragile this early that one day they look like they’re heading in the right direction, and it only takes a few bumps to derail a bit. While I’m continuing to try to stay grounded and faithful, it feels like I’m tied to a string straight to my Maddy’s well-being. If he’s not okay, I’m not okay. If he has a setback, I have a setback, if he’s content, I’m content. I guess that’s the core of being a mom, isn’t it?

This morning, our hearts sank when we saw the top was back on his isolette. His temperature dropped overnight and his oxygen saturation was drifty so they need to monitor it and make sure he can maintain his temperature on his own. This was a setback. They tested for any signs of infection but there wasn’t one. Praise God.

Later on in the day the nurse tried to give him his full salt serving in a bottle (see earlier blog post for information about salt intake for CF patients). He hated it. This caused him a lot of distress and caused his oxygen saturation levels to drop significantly leading him to need to be put on oxygen. Major setback.

Through tears I asked to speak to a doctor. I wanted to be Maddox’s voice in this moment and ask if he could pause the salts for a couple days as he establishes his feeding out of the bottle. I mean, I would have a fit too if there was salt in my milk – poor baby. They talked to the pulmonary team and they agreed that was best. I’m learning how important it is to be an advocate for my child. While the doctors and nurses are absolutely incredible, I still know my baby at the end of the day and I knew that this was going to #1 – not help with his milk intake and #2 – cause him stress and exert a lot of energy. We will find a better way to get his salt intake, but for now we need to focus on nourishing him and conserving his energy.

Although we felt defeated today, we know that setbacks are followed by comebacks. God often uses tough times to push us forward when we trust and surrender. This, in my opinion, is one of the hardest things to do. Adam and I catch ourselves playing out the “what if” scenarios and trying to engineer the different possible outcomes. The beauty is that we aren’t in control. Tonight, we are going to bed holding onto the promise that despite the storms surrounding us, our faith will not be shaken and there is something greater waiting on the other side.

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.

– Isaiah 43:2