Happy Friday Friends!
Lucie Pie, Oh My! First off, thank you all for sticking with us through this... it is day 50 of this wild ride, and you guys have been right here with us through the ups and downs. It may feel redundant to just go on and on every day about how Lucie is doing, but we're so thankful that you all care so deeply about us and our sweet family, -and that you want to be kept in the loop. There's no doubt that this is a tough time in our lives, but it is so humbling to be surrounded by so many friends and families supporting us through it all. I mean, you all have life happening too, you have hard days and busy days and yet you stop and take time to care for us... all we can say is THANK YOU. Truly.
Lucie-Lyn is having a very stable, solid day today. In addition to her brain bleeds, the Doctor's are mainly keeping an eye on her breathing and her blood count this week. Like we mentioned, she is on the nasal prongs to assist with her breathing and the goal is to continue to wean her off of the ventilation settings as she and her lungs grow. So far, they have been able to wean her a little bit each day this week, and she has been able to tolerate it. One sign that she's improving is that after a small physical exam today, she didn't have even one d-sat or brady (drop in her heart rate) throughout the whole thing! That's amazing!! Usually if she is getting moved around a lot, she has some sort of a little dip. Lucie has also been taking a medication for her blood this week which will hopefully improve her blood count, and prevent her from needing blood transfusions if possible. They will do complete lab work on Monday to confirm that the medicine is working, but in the mean time the smaller tests they have done indicate that her blood count is improving a little bit. She is also continuing to tolerate her bolus feedings at 25mL per feeding! So we are celebrating in these victories that show our little love is getting healthier and stronger every day!
Tonight we came in and Lucie was on her belly which she usually loves. Right away we noticed she was having an unusual amount of dips. The nurse flipped her on to her back to check her vitals and she immediately perked back up into the ranges she needed to be at. After that, Rob was ready for Kangaroo care, and had Lucie on her belly against his chest, but again she was dipping, so he bundled her up like a baby burrito and let her rest in his arms on her back. Even though it was alarming to see her have unusual dips, realizing this was just her way of telling us that she preferred her back was actually really encouraging because we know eventually she won't be able to be on her belly as she gets bigger!
Hoe you have a great night!
love and hugs,
Drea, Rob, Lucie and Bess
My loves :)
Two words: Double. Chin.