Today was a rough day for us. We just now got home from the hospital, and need to get to bed, so we can get up and do this again tomorrow.

I’m going to keep tonight’s post short. I may post a more detailed accounting of our day tomorrow, when we have more time.

Overall, things with Lila are ok. She couldn’t maintain her temperature today, and her heart rate was on the low side of the normal range, so she needed to have a “complete work up” done–meaning, more blood drawn, another lumbar puncture, and her IV reinserted (and she had JUST gotten it out this morning, ugh). This is to rule out any kind of infection she may have. She will be treated with antibiotics until the test results come back (which is why she needed the IV back), to be safe. The cardiologists are also cutting her dose of propranolol in half, as that may be contributing to the low heart rate. The dose is still supposed to be enough to ward off the SVT, so we’re hoping that doesn’t come back. We had to leave during the procedures, it was too much for us to listen to her yelling, she was SO mad. I swear, once she’s home with us, and we have vaccinations to worry about?? That’ll be a piece of cake compared to this nightmare.

She stayed under the heat lamps today also, bundled up, in order to keep her temp in a good range. Due to all of the incessant poking and sticking, she slept a lot this afternoon (and screamed a lot too). When we left after 8 tonight, she was out cold. We’re hoping she has a quieter night tonight, and can get some rest.

Jon and I also wanted to make sure that our friends and family know how much we appreciate the phone calls, texts, emails, cards, everything. We feel so badly that we’re not able to call everyone back, or reply to your messages, it is just too much for us right now. We are so incredibly drained when we leave the hospital each night, we don’t even talk to each other on the ride home. We have about an hour to ourselves at night, before we have to get to bed, so I can get up and pump, and we can repeat the routine for yet another day. And we just want to make sure everyone knows how appreciative we are of all of your support, it really helps get us through this. We love reading your comments and emails, and even read some of them to Lila while we’re at the hospital. So please know, we are getting all of your messages, and we love hearing from you. I promise, the old Jon and Meg you all know will return once Lila is home with us, healthy and happy.

In the meantime, some pics from today.

Lila with her dad, she is so calm with him.

Lila with her dad, she is so calm with him.

Bundled up to stay warm

Bundled up to stay warm

Sleep tight, little Lila, we love you.

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