Hello my friends, I just wanted to pop in to let you know we are surviving. Lizzie is so very happy to be home. She just shakes in excitement each morning when we come downstairs. She smiles and laughs and is just, well, happy. This experience is is an entirely different kind of hard. Lizzie is still a very sick little girl, she requires round the clock medical care and constant respiratory support. Her room is stocked full of medical equipment and supplies, now only bits and pieces of the pink cuteness peaks through. That’s ok though, she is home!
If you don’t hear from us, it’s because this new life is very busy and we are still trying to work out the kinks. And of course just when we think we have the kinks worked out, another child wakes up in the night coughing and vomiting and creating even more laundry to add to the 37 loads already piled up. The 126 nights in the PICU did train my body to take sleep whenever it can get it. Waking up about every 2 hours for respiratory treatments, and to give meds, and readjust the bi-pap mask, and to check the feeding pump, amongst other things… It’s a never ending job. Add on the demands of being a mommy who was away for months, it’s a lot! But did I mention we are home?!
Everyday is a little easier than the day before, we’re getting used to having strangers in our home and I’m trying to utilize the 10 hours a day of nursing help as much as possible. It’s just a bit easier said than done. I still want to be momma and it’s hard for this momma to hand over duties, and because we haven’t been alone as a family in so long I yearn for a little privacy. If you don’t use the hours, you lose the hours and we don’t want to lose any help just yet. I do wish we had thought to prepare the boys for all the machines, work, and people that came with our little princess. Though I don’t really think I even realized just what all bringing Lizzie home would entail. Please know I am not complaining, life as we know it is just very, very different than what it was. I stand amazed at everyone’s willingness to work together to make life normal for their sister, and oh my gosh we are home!
Let me again say “thank you” to those friends and family who have helped with house cleaning, gift cards, meals, rides, etc. You have made this entire experience easier for our family. I still can’t believe we are home! It’s difficult to take pictures because we are lugging equipment around behind her wherever she goes and she’s never been a fan of the camera, but here are a few cute ones. Of Lizzie. At home!