I haven’t posted about Aliceana’s whole story about being in the NICU yet, because it’s tough and when I wrote out what happened I think it was all too fresh and I was still feeling quite bitter about the whole situation, so I have quite a bit of editing to do before I want the world to hear that part of our journey. When it comes down to it, I could say that my daughter is a child with special needs. She has a rare lung disease and requires oxygen 24/7. It’s definitely a different situation than I thought I would be in as a first time mom, but I’ve learned to deal with it.

I didn’t mind nurse visits, it was nice to know her exact weight weekly and just to know we had the extra care. The nurse was really enjoyable too, she was just about the nicest nurse we could ask for. She was such a cute old lady, and she knew her stuff. I think it was adorably how impressed she was by everything I knew and did with Aliceana; from my crazy schedule that got my little one to sleep through the night, all of the information I know about all of her medical problems, to just the way I act with her. One day she brought a nurse in training and all she did was brag about me, as if I was her own daughter and not just the mother of a patient. Today was our last day of our home nurse visits! Aliceana has been doing so good and gaining so much weight (about 1 pound per week!) that she was officially discharged today. Now this doesn’t mean any progress with her lung disease, but it does mean we haven’t had any fall backs (which we shouldn’t have, this disease is supposed to only ever improve over time.)

It’s so nice because every day that the nurse came was such a hassle. I would have to make sure the dining room was clean and the table completely cleared off (as this was the best space for the visit), then I had to wait for a phone call telling me when the nurse was coming, then have to get Aliceana on a schedule that would coincide with the visit so she wasn’t fussy, I would have to take her temperature ahead of time, find time to get somewhat dressed and presentable, have Aliceana unhooked from the stationary oxygen tank and hooked up to portable oxygen, gather items for the visit (blanket for the scale, diapers, wipes, etc.), then get the dog outside right before the nurse came. Of course my husband was never home for any of these visits, so it was a whole lot of fun getting everything prepared myself! Now I don’t have to deal with it ever again!

This might not mean that she’s cured, but it’s a step in the right direction for us! I think I’ll celebrate with a glass of wine later!