I didn’t want to share this. I hate seeing her like this and I don’t want others to see her this way, either. But the truth is, this is our reality right now. This is what we see when we go visit her right now.
There’s a lot happening in this photo. So, let me explain what you’re looking at:
- She’s been put on a ventilator. That’s the tube going into her little mouth. Because of the ventilator, she’s been sedated so she doesn’t move too much. And because she’s sedated she’s also on a pain reliever because she can’t express any pain she might be feeling from the ventilator moving her chest at such a rapid rate. They want to make sure that her little body isn’t going through too much stress.
- She also has her feeding tube going into her mouth. Right now, she isn’t eating because it takes too much oxygen to digest. They want all of the oxygen she’s getting to go to her lungs and brain. They’ve upped all of her fluids (lipids) in order to continue giving her the calories she needs to continue to grow. The bigger she gets the easier it will be for her body to handle everything she needs to be doing.
- On her right leg, there is a blood pressure cuff. On 1/10 her blood pressure dropped super low. They put her on dopamine and two others (I can’t remember the name, but I do know one is a steroid – this will also help her lungs) to help regulate her blood pressure. Today, we were told that her blood pressure was now too high and they’re starting to wean her off the dopamine, which is a good thing.
- On her left foot, they’ve inserted an IV. This IV is providing her three antibiotics. These are all to help her fight off whatever infection/bacteria she’s contracted. Thankfully, her doctor started her on these early so she could be one step ahead. She didn’t want to wait to get results before starting her on them. Now that they know she definitely has an infection she’s already ahead of the game. This IV is also providing her with platelets. They did a CBC (complete blood count) and found that her platelet count was too low. So, she’s receiving that and once that’s been completed she will also receive red blood cells through the same line.
Here’s the good news:
- When they put her on the ventilator they were providing almost 100% oxygen. At 7am this morning I got an update call from her doctor who told me that they were able to lower her oxygen to 76%. When we went in to visit her about noon we were told that she had been lowered to 51% oxygen. This is a giant leap in the right direction. This means that she’s not needing as much support. That said, she still has a long road ahead. We’re still taking it minute-by-minute, but God has given us this to hold on to for now.
- They are able to start weaning her off the blood pressure medication. Once that stabilizes, it’s less they have to pump into her tiny little body.
- Finally, her skin color is looking MUCH better. They don’t have under the UV lights right now because they want to be able to see her movements and make sure she doesn’t have any seizures. They’ll put her back under them eventually, but not right now.
The doctors and nurses are saying it could be a few weeks before she’s able to come off the ventilator, but for now, she’s stable and resting comfortably. I don’t feel like I’m looking at my baby when I see this photo, but my heart knows I am. And when we were there they told us we could still reach in and touch her. And our hearts just knew that she knew we were there.
I still have moments where tears are the only way I know how to communicate how I’m feeling. I know she’s going to be okay. I know the Lord has her. We are children of God and we trust that He has a perfect plan for her life.
Thank you for your prayers. They’re working!