hey sweet girl=) don't you love this family picture? it was taken today when we were getting to hang out with you a little. you had just gotten turned over on your tummy (you really like that) and daddy and i were giving you a little lotion massage on your back. you were very awake during it all! you even let us see your pretty eyes for a while-we love that=) we feel like we get to connect with you more when you look at us my sweet one. your nurses are letting me do more little mommy things-i get to take your temperature and change your diaper sometimes-i actually got to pick you up for a brief second last night when we weighed you! it wasn't at all the way i'm longing to pick you up (you know, nuzzle you on my chest with your sweet little head in my neck-i will keep waiting for that), but i still got to hold you in my hands, and i'm so thankful for that=)
you have been here for 10 days now, and you've had a very busy week! let me tell you what all you've done. tuesday you came off ecmo, which is a very big deal for you! you've done well without it, my dear. so well, that you even came off nitric oxide today! that was the stuff that dilated your pulmonary vessels to make your lungs work a little better-great work my girl=) i'm so proud of you i don't even know what to say. we stand there looking at you all day long in complete amazement. i'm still terrified that we won't get to keep you, and i suppose that's still a reasonable fear, but we just are blown away by what's going on. who are we to deserve to keep you after all this? to even know you for 10 days, and hopefully so many more after?! daddy and i were driving to see you a few mornings ago and a hillsong united song was on-i looked over at him and he was crying a little (and so i started crying a little too-remember me telling you a long time ago that i would cry when he cried??). i asked him what was going on and he said that he was singing whatever praise and worship song that was to God and he started thinking about you, and how God is sharing you with us, and basically that it's so sweet of Him to do that and we're completely in awe of His goodness and the blessing that is you, my sweet one. you know what else i keep thinking? i really want to believe that we would be just as in awe of Him if He wasn't letting us know you-that we would still recognize how good and loving and miraculous and sovereign He is even if we weren't seeing this little miracle (you!), my precious girl. i want to believe that we would still praise Him, so i'll just believe it. but i sure pray we don't ever have to find out if we are really that strong.
so this coming week will be a big one for you, too. you have surgery scheduled for tuesday to put your little organs back down in your tummy and sew up your diaphragm. you can do it my girl=) i pray that you will just continue healing more and more until then, that you will do so great during surgery, and that you will recover well and quickly. and guess what else? remember how you had a narrowing in your aorta that they thought was a coarctation and would need another surgery for that??? it's not there anymore=) or at least if it is there, it's so minimal that you won't need surgery for it!!! i feel like i don't even recognize what a big deal that is. your daddy and my daddy too keep reminding me that this shouldn't be passed off just as one of those things that happen-that medicine has its flaws and maybe someone missed something or misdiagnosed something-but that everything you're doing is by a Divine Hand and that you are a little miracle living and breathing=) i love you my girl-i am amazed by you and by what God is choosing to do through you. i am so proud of you and i can't wait to tell you this story=)
see you tomorrow my love-
ps-i wanted to tell you that your daddy really did jump when he saw the video of you opening your eyes-he jumped back in his chair and his breath caught in his throat-i wish i had a video of just his reaction to show you-he is so in love with you my girl=)