We had a VERY rough first 36 hours with Maddie. She had a host of lung issues and we almost lost her a few times. I even checked out of the hospital on Monday night against medical advice to go see her at UCLA because things looked bad. I checked back into the hospital later that night, only to leave again yesterday morning for good when things again got grim. We think that Maddie just needed both her mommy and
daddy with her, because thankfully she has had a steady 21 hours. She’d had air escaping from small holes in her lungs. This air was getting trapped between her lungs and ribs, preventing her lungs from being able to expand. She has chest tubes in now to drain those air pockets and they are finally working. The doctors are slowly weaning her dependence on the respirator – she’ll still be on it for a long time, but the amount of breaths and levels of pressure and oxygen are getting closer to “regular” baby levels. She’s on blood pressure medicine that has made her quite swollen…she looks a bit like a sumo wrestler or Jabba the Hut (But still very adorable)! But the medicine is doing its job. She’s on a bunch of other medications, including one that is helping with her heart issues – she has a blocked artery that is preventing blood from getting into her right ventricle. The plan is for her to gain enough weight so she can have a procedure similar to an angioplasty to open that artery. She has a bunch of smaller problems but these are the biggest issues for her right now. She is moving a bit and she’s been opening her eyes (we think they are blue), and she has grasped my finger a few times when I’ve been in talking to her.
With preemies, things go up and down a lot, so even though she’s had a good stretch here we are prepared for some setbacks. In fact, the nurses have warned us to expect some. It’s a long road and she’s far from out of the woods, but she’s fighting hard and we’re so proud of her. She is an amazing little baby and we’re overwhelmed with awe and love for her.
We thank you all so much for all your emails, wishes, and prayers. She is on so many prayer chains and has been the recipient of so many wonderful cards and other gifts. I wish I had the time to email everyone back individually, but believe me when I say every single email we have gotten has helped lift our spirits. All of your stories and well wishes mean the world to Mike and me. We have our families with us and they have been a tremendous help. We read your emails to them and their spirits are brightened as well.
We hope everyone is well. We’ll try to update when we can.
Mike, Heather, and Maddie