Saturday, August 15, 2009

so much stuff...

hi baby=)

ok. so this is one of those times where i feel overwhelmed at everything i have to say to you. turns out, it's probably not that much-but when i don't write you a letter for a few weeks i keep putting it off because i feel like i won't remember everything i want to say and it won't be a good letter. what in the world. i'm a perfectionist. go figure...

also, i'm distracted by the fact that there are 180 thank you notes waiting to be written. that sounds like a complaint, but it certainly isn't. what a wonderful task to have=) i'll explain all that later...

you turn 1 on wednesday. i can't even believe it.

you are getting cuter and cuter-becoming your own little person-we are loving learning about you. i love days when i'm at home by myself with you and we read books and play with toys and watch hgtv and take naps and clean up poop and milk. and then you do the cutest stuff and you have the most incredible laid back and happy personality and i find myself looking around wishing someone was there so i could share with them how incredible you are and they could in turn tell me how incredible you are. gigi is exceptional at this=)

about a month ago you got a tiny little case of pneumonia (have i told you this already? i seriously can't even remember.) we went to your regular pulmonology appointment and when we walked in the door you suddenly started working pretty hard to breathe, breathing really fast, and we couldn't get your sats to stay above was clear that you were struggling. dr schmidt was on vacation that week, so we saw dr williams (we had never met him before that day). apparently you freaked him out pretty good (or so we were told the next day and periodically for the next few weeks...;)). he came in quickly once we brought it to their attention that something was up and he thought maybe your trach was blocked. so we changed it really quickly and it made no difference so he wanted you to be checked out in the hospital overnight. we headed over to the er (and when i say headed i mean practically sprinted through the buildings to get you over there) was kinda funny-that was the first time i could tell that dr williams was really worried-it was a comical caravan though. i was carrying you and dr williams was carrying the oxygen tank attached to you and jim the respiratory therapist was carrying a couple of your bags and also kept grabbing at the blanket to make sure it was covering you-that was very thoughtful of him to try and keep you modest as we go parading through the hospital hallways, huh? and then veronica your nurse (YOUR NURSE!!! have i told you that we have one? we all love each other very much-more on her later) was carrying two purses and your diaper bag and the suction machine and who knows what else. she's kind of amazing. anyway-let's speed this up. you got an x-ray and blood cultures and urine cultures and sputum cultures and some other bloodwork and the only thing that came back abnormal was your white blood count was pretty high. they thought it could've been at least partly because you were pretty upset by the time they drew your blood (they had to stick you 7 times to get your iv that lasted through exactly one dose of antibiotics). no fault of theirs-you have perhaps the world's worst veins. we blame 4 months in the nicu. it was of course a slight concern that perhaps your diaphragm was re-herniating, but the x-rays didn't look like that was the case. also discounting that hypothesis is the fact that you got all better after one dose of antibiotic and a couple nebulizer finally fell asleep on my chest for an hour or so and woke up totally wired bouncing all over the place wanting to play with everything and trying to talk to everyone who walked by. you attracted a lot of sweet attention=) then we went up to the picu for a night and got to go home the next day. it wasn't until a few days later that dr williams called and said the sputum cultures had light growth of a few different bacteria-so we gave you more antibiotics and moved right on. i chalked it up to needing to share you with other hospitals...not just uva=) it actually wasn't bad-i was a little nervous about you being at mcv-i have no idea why-i just have gotten super comfortable with uva and to put it as a huge understatement i kind of love it there. but yes-mcv wasn't bad at all=)

we saw dr schmidt a couple weeks later. i had convinced myself that he would say that since you got sick maybe we should keep the trach in through the winter. but instead he said "we've gotta get that thing out." that basically it's just a direct line for bacteria to get into your lungs and you'd be better off without it. so we took you off everything at that point and now you haven't been on cpap or the ventilator for about 3 weeks. you're rocking on sweet girl. i talked with dr schmidt about whether you should have your trach taken out at mcv or uva--and to put a long story short he said it would probably be best to go to uva-basically because it would happen faster there-they already know you well and it's a multiple step process and at mcv each step would probably require a separate admission and at uva they'd do it all at once. i was beaming on the inside when he said that. there's just something in me that wanted you to get it out surrounded by the people who were there when it was put in. i still think it's the strangest thing that i have the absolute best memories of uva's nicu. maybe the scariest time of our lives and i remember feeling generally peaceful and loved and special-mostly because you were special to those precious nurses and they loved you so much and fought so hard for you. i'm forever grateful for those sweet ladies (and a few men;)). and i guess i should mention that we felt God's sweet hand holding ours and hovering over you and taking perfect care of all three of us. i'm amazed at how He gives exactly what we need, when we need it. i'm getting sidetracked...

so we see dr rodgers this thursday, august 20. that appointment is to basically check in with him and set an admission date for you at uva. the day you get admitted they'll do a bronchoscopy both above and below the trach to see if there is any scar tissue that would make it harder for you to breathe when it comes out-and they'll laser off any that they see. then they might do a sleep study where they plug the trach overnight and make sure that you do ok breathing around it. then the next day we (daddy or me) take our your trach like a regular trach change but we just don't put one back in! we cover the little hole with a gauze and they'll watch you overnight and if you do ok we get to go home the next day. you and your neck free to the wind=) i can't wait to see it and kiss all over it. and inspect your ecmo scar. it's gonna be a doozy i think=) we don't mind.

so there's that bit of sensational news. let's talk about veronica really quickly. if you hadn't noticed, i quit talking about nurses altogether several months ago. there became quite the pattern of us saying no to nurses we didn't feel comfortable with, or there were a few that we liked a lot but for whatever reason they didn't stay with us very long. i came to believe we were running them off, rather i was running them off. with my anxiety or something. but then one day i wasn't even there when the woman came over-daddy met her. daddy, the epitome of relaxed, all the time, who couldn't possibly have run somebody off with anxiety. and she still didn't come back. not only did she not come back, she never even bothered to call the agency again. yikes. and then veronica came along=) i honestly felt the day she came over to meet us that she would stick with us. she was confident and seemed competent and socially appropriate (that has been one of the more comical issues we've encountered). she immediately got down on the ground and picked you up and started talking about how she would be able to see your first steps and, i must admit, in my head i started thinking "really? will you really still be here when she starts walking?" call me skeptical. i think it might be justified. but she's been with us about a month now and we couldn't be happier. you love her so much-you're usually still sleeping when she gets to our house in the morning, and when you wake up i carry you out to the den to see her-you get a big grin on your face and bury your head in my chest and start flirting with her. you reach for her and she gives you a big hug and y'all get down on the floor and start playing. you mostly want to get her name tag. she really does go above and beyond what most people would expect from a nurse-she pays close attention with your feeding therapist and physical therapist and she practices everything you learn with them at home. i give her lots of credit for you starting to crawl last week. ok-let's move along to crawling.

you had been acting like you were about to crawl for a couple months-and you finally did when we were at gigi and grandaddy's house. you were on the bed in the room that was mine when i was growing up and daddy and me and uncle nathan i think were close by-then we called in gigi and grandaddy to see. we went over to grandypa's house that night for dinner with the davises so they got to see you on the move too=) you've also started pointing at things you like. pretty much you start pointing at anything you look at. we like it=) and you have discovered gravity and toss things down the second we put it back in your hand. daddy especially loves playing that game with you. you still think it's hysterical for you to put things in our mouths. and then take it out and put it in yours. and then back in ours. apparently, we are not afraid of a little slobber-sharing. we are so proud of you sweet girl. you just keep moving along from milestone to milestone-following your own little timeline=)

the trip home was great. got to see lots of family and meet sweet hazel (who is unbelievably think she is very interesting and reach for her all the time-mostly you want to touch her face and head and pull the pacifier out of her mouth so you can chew on it). you got to meet some of mommy's friends and their sweet babies. you and jack had your first date, while the older and more mature owen supervised. we got to spend a couple days at the lake again, which is always wonderful. your cousin jackson might have fallen more in love with you. when we left, gigi told me about the following conversation that took place:

jackson: "are you sad, gigi?" (gigi was crying a little)
gigi: "i just wish they lived closer to us so we could see them more often."
jackson: "me too! i wish they lived closer so i could be with baby catherine! i think i will marry her."
gigi: giggles "well i don't think you can marry her, but maybe you can just be a great big cousin."
jackson: "i would be the BEST big cousin! i have so much to teach her!"

i loved it. i can't get over how much he loves you.

and then the birthday party was pretty unbelievable. you and i both got a little cold the week before and i was contemplating for half a second cancelling the party-just thinking that, as great as it was gonna be, it wasn't worth exposing you to germs that most healthy people don't even know they're carrying, but you would have a hard time protecting yourself against. and when we decided not to cancel it i considered cancelling the other party in richmond, because it will be a week before you're supposed to get your trach out and it REALLY wouldn't be worth getting you sick then. but i think we've decided to just beg people to come see you another time if they're even the slightest bit sick, or have even been around people who are sick, and that we'll just wash down the healthy ones that do come with hand sanitizer when they walk in the door. it sounds pretty obnoxious, but pretty worth it. back on subject: so we had the georgia party at the church that grandmother, gigi, and i all grew up in. there are 4 sweet sisters who go there and catered it for us. fanciest 1 year old's birthday party i've ever seen. seriously-they thought of everything and made it so easy for gigi and me. we didn't do a single thing but tell them how many people were coming (that number ended up being 180, by the way. yes my sweet-you are dearly loved) and pick some food off a list. you were, as expected, a little overwhelmed at first by all the people and a new place, but once you got used to it all you started hamming it up. you literally smile when somebody pulls out a camera and points it at you. can you possibly be doing this on purpose? i don't know-it's pretty hilarious and one of the cutest things i've ever seen. i'm not biased, do you think? it was so pretty in that room. big food tables in the middle with little white lights and pink fluffies everywhere. (i can't remember what the real name for "fluffies" is. 4 years ago when i was in wedding mode, i would've spouted it off in a second. "tulle" or something like that. maybe.) they had a couple of kids' tables with balloons and goldfish crackers and gummy bears and plastic colorful star shaped sunglasses-i was so thankful to see the other kids playing and having fun. and the amount of people that were there!!!!! it was the most wonderful overwhelming feeling when it was time to let you have at the cake and suddenly the mass of people that were filtering through the room all turned their attention to face you and sing and watch you (us) blow out the candle. this is a little dramatic, and you know how i feel about that, but in that moment when i saw everyone turn toward you, i recognized the love they have for you and our little family and how much they had been praying for you and rooting for you-petitioning heaven to make you healthy and keep you here on earth. and i was so thankful to be able to share the celebration of your first birthday with them. what an honor to have them there. i still can't really find the words to describe how grateful i am to each of them. and goodness sister-the amount of gifts you received!!! every time i caught a glimpse of the gift table i laughed a little-you are one wonderfully spoiled little girl. so speaking of gifts, i need to shamelessly and blatantly use this letter as a communication tool with these people we're talking about. just for a second. here i go: we received 3 presents with no cards attached-we think they got mixed up in the transition from the church to the car....

1) a Fisher Price "Jam Band" toy
2) a portable plush sound machine and a pink luggage tag
3) bath letters and numbers and a sing-a-long cd

please let me know if any of these are from you! i am the absolute worst at writing thank you notes, but i fully realize what a horrible horrible trait this is and am trying desperately to change! you have blessed us tremendously and i would love to give each of you the thank you you deserve for celebrating with us and pouring out love and gifts on catherine!!! and by the way-somehow i don't have ANY pictures on my camera from the party, so i'm begging people to share theirs with me=)

baby-you have 12 flipping teeth. what in the world are you doing with 12 teeth.

sometimes (ok, a lot of the time) daddy is singing. he is usually singing really loud-most likely to make sure he gets some attention. or, as he explains it, "so he can hit the high notes." he's ridiculous. you're gonna love it. uncle nathan did the same thing growing up and it made me crazy and i usually started yelling at him to be quiet-but as i got older i came to appreciate it because i knew it meant he was happy. it's kinda like that with daddy too. sometimes he sings quietly to himself, or just hums. my favorite is when he hums to himself while he is working on the computer. writing a paper or something. i imagine his soul is peaceful and he is content when he's doing this. it's usually a praise song or an older hymn. i like this too because i get a picture in my head of him learning those songs as a little kid growing up with grandypa and grandma donna and silly kelly, sweet keith, and perfect nikki with her scissors;) what a great family to grow up in. and this wasn't the point of me starting to tell you about this, but my stream of consciousness is taking me in the direction of being really thankful he was raised to be so creative and artistic and musical. i am none of those things. i probably could be-i am halfway decent at a lot of things but not really great at much. i was good at piano once. (this sounds like i'm putting myself down-i am not-again, just stream of consciousness). i realized a few months ago that i hardly ever sing to you. i am such a bad singer that i actually become out of breath when i try to really sing to you! (and i still can't figure out why! but it happens-every time) for a minute i got sad about that, but it's ok. daddy is enough singer for both of us=) ok-so my actual point is: i want to make sure we cultivate all these things in you. art and creativity and music-for you to have at your fingertips any outlet you please to express yourself. right now is one of those times that i'm reminded of how thankful i am to have your dad to be my parenting partner=) we balance each other pretty well and i think we'll both be better parents because we have the other to walk along side. there goes my stream of consciousness again. oh-and i should say that another favorite is when he sings something with a little more flavor...hearing him go to town on beyonce's "single ladies put a ring on it" is something everybody should experience at some point or another.

i love you sweet baby. i'm pretty sure i have a million more things to tell you but my brain still feels like a whirlwind so that's all for now. what a big month we've had...?!?!


you weren't super excited about getting icing on your fingers-so you put it all over mine and daddy's face instead=)

miss christi and miley, you and me, and miss tori and mady. you and mady were checking each other out=) (miss christi is the one who makes all your cute clothes-which explains why miley and mady have on the same dress that you have=))

you and big d having fun together=)

you really wanted to chew on hazel's pacifier.

you LOVE being thrown up in the air! and i love big d's face in the background=)

you and uncle kelly hanging out.

hannah and owen, you and me, and sara and jack=)

you are shamelessly flirting with mr tony.

you and jack getting used to each other.

i can't decide if jack is part native-american or if you are just part albino...

you are REALLY EXCITED to meet hazel!!! i love aunt misty's face here=)

you love her! what fun to have a new little baby to play with!

my sweet girl=)

you sassy little thing.

you and aunt nikki=) she had just given you the princess/ballerina outfit you are wearing=)


ilse sears said...

So, so happy to have finally met little Catherine and see, with my two eyes, that she is doing so well. What a celebration. Catherine deserved the best and she still does after all of the pain and challenges she has had to endure. She is a true example of "yes, I can!" Love you all! Aunt Spanish. I love reading your blog and I don't get tired of it. Please continue with it. And, don't worry about the thank you cards. We know you appreciate everything. Go take care of that little Angel.

Abby and Pete said...

what joy fills my soul. amazement. i can't wait to see the birthday pictures! love you guys so much...this letter makes me beam.

ShannaRenee said...

i love all the good news.....a permanent and loving nurse (yay!), her crawling, all her teeth, the trach coming out, her 180 fans (just a small portion of the true amount!), and her first birthday!!! i still clearly remember the day she was born last year- all the anxiety and fear and prayers and hope - and now just so many praises and blessings! please give that beautiful birthday girl a big hug and cuddle for me! the close-up picture of her with her head tilted is so perfect! lots of love! :)

btw- the verification word i have for posting this is "misting".....kind of what my eyes are doing now- ha ha! i love it!

Elizabeth said...

How can a 1 year old have 12 teeth????? What a year it has been! I can't wait to see you when you come to get your trach out, Miss Catherine Marie. And hopefully this Saturday, after I get my baby boy off to college for the first time! You and your mommy and daddy are just so amazing. How did you get to be so big and beautiful? I love you. Your fairy godmother

Anonymous said...

HAPPY BIRTHDAY CATHERINE!!!!! Many Blessings to you to today :) One day you will understand why today is SO special! I love all the wonderful news your mommy wrote aboute and I can't wait to see you--hand sanitizer in hand!

DevonLeah said...

Thank you for sharing this post. I always enjoy them! This made me tear up "can't wait to see it and kiss all over it." I have had the exact words come out of my mouth!! I cant wait to kiss on the neck I have never been able to kiss on. And hooray for good nurses! ANd happy first bday, Catherine! Glad to see your little blessing is doing well!!

Christopher, Alicia, and Avery said...

So I'm a little late but happy birthday little miss Catherine! We would have loved to come to your birthday party but we live really far away! Just know you have fans all the way in Alaska! Happy birthday sweet girl!