When it rains it pours?

What a week, and it's only Wednesday! The last few days have been so challenging. While we have much to be grateful for with Vanessa, we are still struggling with her lungs. Through Sunday, Vanessa had been consistently de-satting. What that means is that when she is taking breaths, the breaths she takes and the ones that the ventilator is helping with is not providing adequate support to keep the oxygen in her blood. Because she was having these spells and doing it so frequently, it became a guessing game of what could be causing this issue. The first idea was that she may have some sort of infection in her lungs, so they took a sample from her lungs and checked to see if it showed anything. In the meantime, the doctors decided to treat Vanessa with antibiotics to cover all bases. Unfortunately, this was not the reason for her spells. While I would never want Vanessa to have an infection, it would have been nice to know what was causing this issue. While waiting for the results from the sample, Vanessa continued needing higher and higher support on the ventilator. They did an x-ray and found that her lungs looked very cloudy, which means that they were full of mucus which is probably contributing to her breathing issues.

Monday morning, I head down to the hospital and the nurse practitioner explains to me that Vanessa has had a really rough morning, and that most likely she will have to go back on the oscillatting ventilator. I fell apart... While the nurses and doctors tried to assure me that this was not a step back, just a different kind of support that would be more of what she needs, I couldn't help but feel that we were moving in the wrong direction. And of course, this was my first day back at work. Seriously? I felt so guilty that I was going back to work on a day that it really seemed that Vanessa needed me. But I pushed through and went to work and kept myself together almost the entire day. It was so nice to see everyone, but I would be lying if I said that I really wanted to be there. Everyone tells me that there isn't much I can do at the hospital, and it's true, but I would much rather spend my days there than at work. Anyways, I called the hospital every 3 hours checking to see if she had been switched to the oscillattor, so by 9 pm, the nurse practitioner offered to call me if they had to do it. He said at that point it was a 50/50 chance that it would have to happen. I don't know that I got any real sleep that night. I slept with my phone in my hand the entire night, and at 7:30 am (of course the 5 minutes I was in the kitchen away from my phone) the nurse practioner called to let me know that they had to switch her to the oscillattor. I went down to the hospital to see Vanessa and felt so discouraged. This particular ventilator provides her breaths very quickly so it makes her shake and because it shakes, it is uncomfortable so they have to sedate her. It almost seems harder to see her like this now than before, because she looks so good! She is looking so strong and healthy and is really starting to put on some weight. She is now 2lbs 2 oz and tolerating her feeds like a superstar, and we are so grateful for that!

So, that's where we are... back on the oscillattor and trying to stay cautiously optimistic, because even for as positive as I am naturally, it's hard to not feel broken. Right now, we are taking it minute by minute and just dreaming of the day that sweet little Vanessa will come home. To top off Vanessa's breathing issues and going back to work, we spotted a mouse in the house! Really?!?!?!

It's all worth it for my little princess!

 And clearly, I have a hat obsession! The nurses LOVED this one so I thought I would share.

♥ Cassea