Today was a busy day, for all of us. I hope I can remember everything. This is probably going to be a LONG post, be warned.

We arrived at the hospital this morning, to find Lila off her cooling mat. She had completed the rewarming process of the hypothermia therapy early this morning (around 5am), and was now nice and toasty–not to mention a cute little shade of pink that was missing before. Shortly after we got to her side, the ventilator was removed also. We were so excited for this to happen, because this meant there were no more probes, wires, or tubes coming out of her head, nose, and mouth. She still has various wires and lines attached to other parts of her, but at least we could finally see her precious little face.

She was pretty groggy when we got there, still dealing with the residual effects of the Fentanyl she’s been on for a few days (to keep her from pulling out her wires, and comfortable while on the cooling mat), and getting used to breathing fully on her own (the vent would pick up for her if she decided to get lazy before). However, we were almost immediately able to hold her–something I will NEVER forget. Jon and I were both able to sit with her, and hold her, and just be with her, it was so amazing. This was what we’d wanted since her first seconds on earth, and finally, it was here.

Our New Family

A little blurry, but our first official family photo. We’ve been staring at it all day. Ever since Lila got the vent out, she’s been grunting and growling up a storm, even while sleeping. We think she sounds like a Gremlin (the animal, not the car), it’s adorable. And we’ve also decided that she looks like a cross between a turtle and Terry Francona–you’ll see.

After I finally gave Lila up and let Jon hold her, he also got to feed her! We are starting off using bottles (teeny tiny ones), to get Lila used to sucking and swallowing, two things she’s had done for her since day one. She did ok at this, especially for her first day. It may take some time for her to get used to these reflexes. Jon has also been mastering the diaper changes, he’s amazing with her.

After taking a quick break for lunch, we came back up to spend more time with Lila. This was when things started getting a bit dramatic. She was asleep in her incubator, and a bell started beeping. We found out that she was having an apneac attack, and had stopped breathing. Her nurse was there at the time, and was easily able to “wake her up” by stimulating her and using the oxygen mask near her face (she was not “bagged”, just had the oxygen blowing directly on her face). The whole episode lasted mere seconds, but it felt like forever. The nurse explained to us that these episodes can happen, and that it is not something we should read too much into at this point. She did not require excessive stimulation or force to wake up, and her heartrate did not drop. While this did console us somewhat, we were still very shaken about what had just happened. She had one more episode while I was out of the room also, Jon was with her, and told me it was along the same lines as before. We weren’t liking this direction things were heading, but have to be patient and let the doctors and nurses do their jobs. They won’t discharge her if she isn’t ready to come home, and they will make sure she is healthy before doing so.

Later in the afternoon, Lila had her formal EEG, to see how her brainwaves were functioning. The EEG went well, we will probably hear more about it tomorrow. She did not have an apneac attack during the EEG, and slept through most of it. Almost immediately after her EEG, Lila had her lumbar puncture. This is to rule out any infection in her spinal fluid, such as meningitis. Jon stayed for this, but I went to go pump, so we could feed her after this. When I got back, the test was over, and she again did well. We will probably have those results within 48 hours.

Then it was my turn to feed Lila. So we settled in, and tried the bottle again–still not totally loving it. This could be for many reasons, especially since she’d had such a long day already. We finally got her to take all of it, and the two of us settled in to hang out for a bit while Jon went out to make some calls. This was by far my favorite time with her so far–the two of us, just sitting quietly. I was zoning out listening to her grunt and gurgle in her sleep, in heaven.

And then the bell went off again. She was having another apneac episode in my arms. Shaken to the core, I quickly sat her up and starting rubbing hard on her belly and talking loudly to her. Her nurse was there in seconds, and together we got her to come to–again, this probably lasted seconds, but felt like hours to me. The nurse reassured me that I’d acted quickly and correctly, and there was nothing we could do to have stopped it. We just have to figure out why she is doing this. We left her in her incubator the rest of the afternoon until we left, and I stared at her monitor obsessively, in case she had another attack while we were there. We finally left around 7pm, no new attacks, and came home.

Tonight will be our first night sleeping at home in about a week, it feels so strange to be here. Roxie is psyched we’re home though. And we came home to dinner waiting for us in our mud room, thanks to our friends Andy & Sara–you guys are awesome, seriously. Thank you SO, so much for doing that, it was just what we needed after the day we had. We’re going to call the hospital before bed to see how she is doing, and hope for the best.

In today’s Boston Herald, there was an article about WEEI’s Glenn Ordway and his family. Today is his daughter Mia’s first birthday, and she experienced the same traumatic entrance into the world a year ago–complete with the hypothermia cooling therapy. I wanted to link to her story, and the foundation her parents set up in her name. We can only hope to have the similar results with Lila that they have had with Mia.

Ordway Article

Miracle Mia Foundation

Jon and I are encouraged by Mia’s story, and we talked today about getting involved in these organizations down the road once Lila is better.

We want to leave you with some more photos of our little turtle, we hope you like them.

dad

Dad holding Lila for the first time.

mom

Mom holding Lila for the first time.

duck

With her buddy, her Duck.

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