pictures from the hospital

hi baby=)

here are some pictures i promised! i included a couple from a few days before you came back to uva just so you could see the difference. you were pretty sick, baby! but all better now. you're back to full feeds and all recovered from surgery. we gave you some extra ventilator help the first few days post-op so the pulmonologist here made out a plan for us to just leave you there for a few weeks at least and once we felt like you were ready again we could start weaning you to cpap and then off. you are back to your happy self and we are so glad to see it. you're sticking to a pretty regular schedule. sleeping from about 9:30 till 8am. the last two nights were the first i've ever not gotten up AT ALL in the middle of the night!!! i heard you wake up a few times but you just went back to sleep so i did too. i can't tell you how happy this makes me. mommy is one of those people who needs more sleep than the average person to function well. you'll see. you'll take a long nap around 11 and then another shorter nap around 4:30. daddy asked me what my favorite part of the day was today and i said when i hear you talking and singing to yourself in the morning and then i peek up over the edge of your crib and you look over at me and start smiling so big. you've also started reaching for us when you want to be picked up. very cute. you won't take your pacifier right now (it took you a while after surgery last time too, we're not sure if there's a connection or not because last time you were also really sick...who knows). i would just be thankful that you don't want it and we won't have to go through a grieving of the pacifier period, but if you'd take a pacifier you'd be more likely to take a bottle. owell. so instead of just needing your pacifier to go to sleep, you want to be held for a few minutes. you fight it a little, but i guess that's pretty normal for sweet babies. you're playing with all your gadgets more than ever, and throwing toys we give you if you aren't interested (mostly your pacifier). it's pretty cute. you also love it when i yawn. i don't know why, but it makes you laugh. so then we laugh too=)

we're going home friday. can't wait=) daddy and i are needing to take you on some walks. we might even take you to meet sweet hazel (your new cousin-to-be) in june. anna cate and jackson would be there too. they are your big cousins who will teach you all about the world. we can't wait for you to meet them.

ok love you baby. keep up the good work=)
mommy

3 days before you went back to the hospital-you look like you're getting sick (and you also look scared!)
4 days before going back to the hospital, and you look sick for sure but look how sweet your bow is! little girly girl indeed.

amazed by daddy in the hospital. you'll figure him out one day sweet girl.

pensive.

you look like you might be up to something. you two are gonna be a sneaky team...

sweet serious baby

laughing hard with mama

fun fun

sweet curious girl

sweet snuggles

sleepy baby

rollin around snugglin with your blanket

happy face

you're super cute, trying to break out of your crib...

working with wally and friends

daddy's pretty good at making you laugh

yay=)

our little beauty=)

slideshow from this hospital stay


slideshow from hospital stay for your g-tube and ostomies

put back together =)

hi baby=)

i have so many pictures and videos to show you, but i'll have to do that later. so i'll just tell you what you're up to right now. you had surgery last night. you were the fifth case with a chance that the third would last only 30 minutes but it lasted an hour and a half, and the fourth case was maybe going to be cancelled, but it wasn't....so finally at 8:00pm you head into the OR for your big (and hopefully last) surgery. all went well. they put your little intestines back together and you have no more j-tube and no more ileostomy. just one little incision line with a g-tube on the end. and he did an esophageal dilation to make sure your nissen wasn't too loose or too tight. it was just fine. so you were wonderful and stable during surgery and they called us a little after 10 to come down to the pacu and see you. you were sweet and peaceful. you have a funny reaction to anesthesia where you gag a lot, and that's obviously not a ton of fun when you just had surgery and your belly hurts. so slowly you've worked the anesthesia out of your system and now it's just normal (for you) post-op stuff like low-grade temperature, grumpy and needing your morphine here and there, and little dazed, elevated heart rate...nothing we can't handle. this afternoon you woke up a little more and you were fairly content. you gave me 3 almost smiles and you will grab your little pink minty flavored sponge on a stick and chew on it. when you were so sleepy you would grab your passy and put it up to your (closed) mouth and just push it against your lips but your eyes never open and you never quite got it into your mouth. very cute, but i also wanted to just fix it for you. so while you are precious and great, none of us like these few days post-op. you are not very happy and we just want you to be comfy and none of us can quite make everything better for you. but soon enough sweet baby=)

we have loved (really? loved? hard to believe but that is the word that's coming to mind) being at the hospital the last few weeks. you've been able to do lots of things. physical therapy and occupational therapy and speech therapy come in almost every day to work with you. we've always known that you'd have a hard time with certain gross motor milestones so they've taught us different specifics to help you sit up and put more weight through your arms and lean certain ways, etc...and you've gotten a tiny bit better at feeding by mouth. liking popsicles a little and swallowing water (no worries-we're not actually trying to "feed" you and get you nutrition this way...we're just teaching you what to do with food or liquid in your mouth) and banana flavored baby food and your dad has been heading up this conquest. he can't really just play with you regular-he has to be teaching you something. always squirting things in your mouth (strangely enough-you'll take liquid and baby food if it comes from a syringe but if it's on a spoon you're not as interested) or helping you sit up. i'm thankful for him because i'm not as good at pushing you and challenging you. i'm just your soft mama. we're a good balance, your mom and dad. nice how that works.

they also consulted with pulmonology and cardiology to continue weaning your vent. they quit giving you sildenafil because they said your pulmonary pressures on your last echo were low enough. they lowered your pressure support on the vent for a few days then turned you to cpap. you looked awesome for about 36 hours and then i'd notice an occasional spell where you'd work a little harder to breathe. finally one lasted a little longer so i asked if maybe we could give you a little more help, at least to get you through surgery. so we did. you don't have a set respiratory rate, but we gave you a pressure support is 5 (10 just for the few days post-op). we'll reconvene after you recover and get stronger again and figure out another weaning plan. no worries. well, actually, that's a lie. there is this part of me that goes straight to "oh no-what if this means she's never gonna be able to do it. what if her lungs are never ready. what if she needs a lung transplant. what if she's on a ventilator forever." sorry baby. that's just what i do. prove me wrong please ;)

mother's day was great=) low-key and wonderful. we played with you while you were awake and during your naps daddy and i took long walks (it was another katie day, therefore, happy mama) and ate meals outside and went shopping yet again at mommy's favorite store ann taylor loft and had great conversation (about internship sites and theology, of all things;)) and got ice cream. we were wishing we could've taken you with us so much. not too much longer.

we've also gotten to play with all our old friends and make some new ones. turns out 7 central is full of lots of quality people for us to get to know. miss lindsay and elizabeth and kam come to see you a lot. uncle josh and sweet betsy come to see you when they can. gigi came yesterday so she could be with you over the next few days when daddy and i are working. she puts her head close to yours and sings to you. you love it. my grandmother made me dolls when i was little and my first one was named sally. i carried her everywhere and she is ragged like you wouldn't believe. mom washed her and brought her to you, and you loved her so much when she gave her to you. and mommy's friends mary and sara and libby came last weekend to have our girls' night for my birthday-it was tons of fun. in a very unexpected way. ;) we met fun friends at our japanese steakhouse table who made our night. we also made a new ceramic friend named lola. i'll show you pictures. we were all very successful in catching in our mouth the food they throw at us. very classy. =)

i think God has been teaching me something specific lately. to hold you in a loose grasp. that you're not totally mine. that He's blessing us by placing you in our care while we're here on earth but that you are really His. typing that makes me stop for a second and feel mystical and smile. i love that you are His. that gives me the most comfort. but yes-i think He's teaching me to hold you close, but to make sure that grasp is not too tight. that the grasp is loose enough that you'll still recognize His sovereignty in your life. that He is the one sweetly and affirmingly guiding you in your decisions and that the best place for you is abiding in His unconventional safety that will challenge you out of your comfort zone every day. i pray that for you. i pray that He is revealing Himself to you every day and that you are falling in love with Him. that you will be His. that you will love Him with the way you live your life. that your face will be radiant from abiding in Him and His joy will fill those beautiful eyes of yours. (radiant is one of mommy's favorite words. you should know that i think)

ok babe. love you. pictures to come.

mommy