Saturday, January 31, 2009

a week of doctors

you playing in your bumbo chair

i thought this one showed how big you are getting!

you being a cutie

chewing on your finger=)

sweet catherine-

hi baby=) this was a good week. i'll talk about the doctor's appointments in a minute, but first i want to tell you something else fun. there have been different nurses coming over to meet you to potentially help mommy and daddy take care of you, but we have just not felt great about most of them, and the one that we did like got very sick a week after she started coming over=( so after about 9 nurses, we decided that we were very picky and that was perfectly ok, and that we were ok without a nurse for now. we told the agencies thank you so much for working so hard to find us a nurse, but that we were fortunate enough to do this by ourselves for now. we told them what we were looking for, admitted that it's probably mary poppins, and asked them to call us if they found this combination in a person. one agency said thank you so much for letting them know and they supported us in trying to find what's right for our family...but the other agency said they thought they had a mary poppins for us and if we meet her and didn't like her they wouldn't send us anybody else if that's what we wanted. so i agreed to meet her but was very convinced i actually didn't really want help right now-i think it made me a little anxious (shocking, i know) to have somebody in our house taking care of you when i could be doing it myself. so she came over the next morning, and guess what...we liked her so much! it amazes me that we actually feel comfortable having her take care of you. you spent lots of time learning her face and seemed pretty happy with her yourself. she was very flexible and told us that she could be here as much or as little as we wanted. so yesterday was her first day. she hung out with you while mommy slept after working all night. when i woke up she told me you had been smiling at her all day long and you two had lots of fun together. that makes mommy's heart very happy=) you want to know something else funny? this is kind of making mommy feel like a grown-up for the first time....picking a "babysitter" of sorts for my sweet little girl-isn't that weird?? i think you'll probably laugh at that when you're older. it will probably be weird imagining your mommy not feeling like a grown-up=) so there's that bit of good news. mommy can sleep after working and daddy can get his work done from home. and we can just walk into the den and play with you if we want to at any point in the day, but we can relax knowing that you are safe with miss aaliyah. all good things=)

so now onto the doctor's appointments. tuesday we went to see dr schmidt, your pulmonologist. we like him very much. here's a little ironic twist to this story-daddy had to work that day so mommy's friend margaret was coming over at 8 to drive us to mcv where the doctor i'm walking you from your room to the front door i hear something outside getting really loud and look out the front door only to see that it's POURING sleet---yes sleeting and snowing--something that mommy doesn't know what to do with. so not only do we have to get you out in the horrible cold and wet weather, we have to drive in the sleet downtown and navigate through the nightmare that is mcv. but we were a-ok=) no worries. mommy is kind of being dramatic. so dr schmidt was very pleased to see how you were doing-he tested your CO2 in the beginning and end of the visit. it was always down in the 30's where it should be=) he decided to wean the rate on your ventilator from 35 to 30, and he told me in a week if you still looked like you weren't working harder to breathe that i could lower it to 28. then after we lowered it to 30 they did a bronchoscopy on you (you have been having some blood in your secretions so they put a little camera down your trach to see what was going on down there) and it looked red and irritated-dr schmidt thinks it's from when we couldn't get the trach back in around christmas and you had so many trach changes within 3 days-the kind of trach you had then was a little like sandpaper =( and he thinks some bacteria just hopped right onto the irritated he gave us some antibiotics to give to you and hopefully that will clear the bleeding right up. you got pretty upset during the bronchoscopy so dr schmidt gave you and me some time to snuggle and calm you down, then he tested your CO2 again-and it was still great! that made him very happy-he seemed a little surprised actually-and he said that i could go ahead and lower the rate down to 26 in a couple weeks if all looked well at home. then we see him again in a month. i asked him too if it was outrageous to think it was possible for you to get the trach out this year and he said it's not impossible, but not definite either. that you would tell us if you needed it for longer or not, and that if it's not out by september/early october that you would need to keep it in for the whole winter to help you if you got sick. that's just fine sweet girl. you let us know. we will be happy either way just to get to play with you and watch you grow and learn your world.

then thursday we saw dr falterman, your cardiologist. we love her too. we were so happy to see that you weighed 12 lbs 12 oz now=) you are growing so great sweet girl. she did another echo and it showed that your pulmonary hypertension is getting better!!!! your pulmonary pressures were about "75" when you left the hospital, then a week after you got home they were 50, and now they're 30-35!!! normal is 25, so we're getting there. you're on a huge whopping dose of medicine for it so obviously we wish that had already fixed it, but we're moving in the right direction and we will be as patient as we need to be. we see her again in march and hopefully we'll get more good news then=)

grandmother (your gigi's mama) got here yesterday-it was very special to see her holding you and watching you two learn each other's faces. she cried and cried and hugged mommy and told us how precious we both were-she is very good at being a grandmother=) she is staying with us for a week so you two have lots of fun times in store. so now you've met 4 of your great grandparents-we think that's so lucky=) you have two more in texas-they are such precious people and we know you'll love them so much. and then you have one grandmother and two great-grandparents in heaven who i know are so jealous, but so thankful that they didn't get to meet you as soon as we thought they might. they are no doubt thrilled that we get to keep you and therefore they can't meet you quite yet=)

i wanted to show you how you like to sleep. that's what this picture is of=) there's also a picture showing how you've started chewing on your finger=) i love it. i can't remember if i've told you all this stuff but it's very fun so i want to tell you again. first of all, one of the few times you get fussy is when you're sleepy. (you're a very very good baby and really don't get fussy much at all-you give us lots of smiles and you sleep through the night and we keep thinking how, if you weren't sick, we would be spoiled rotten by what an easy baby you were!) but when you're sleepy you just need me to hold your passy in your mouth and put your cheek in my hand, and i pat your head with my other hand. the greatest melt-mommy's-heart moment is when you reach up and put your hand on mine, sometimes squeezing my hand a little tighter against your face. you'll look up at my eyes for a little bit and then those sweet little eyelids start drooping and you fall asleep pretty quickly. what a sweet little thing you are. i can't even stand it. and here in the picture it shows how you like your head to be wrapped up in a blanket. i think it's hilarious and so cute. it's like you know that when we snuggle your head in there it's time to start closing your eyes, because that's what you usually do=) you'll wiggle a little and turn your head up and smush your face into the blanket a little bit (no worries-you're on a ventilator and there's no concern that you couldn't breathe) and then turn into sleepy mode. you are the most fun to learn=)

you know what else is fun? when you're laying on the floor and we come up and look at you upside down-you love it=) your little face lights up and you smile at us and your eyes get really wide and you tilt your head back as far as you can to get a good look at usually start flapping those arms around-it's great=)

you decided to take a bottle a little better this week. karol, your occupational therapist came, and she and mommy and daddy were working with you to help you drink from the bottle. you would kind of cooperate a little-if we'd squeeze some milk into your cheek you'd swallow some or let some go down your not too discouraging but no real success then karol and mommy were talking and i looked over and saw you chowing down taking the bottle from daddy! sucking (almost) like normal and you drank the whole thing!!! we were very excited and decided that you will not be controlled=) sounds like somebody else, or maybe two somebody elses that i know...

this is something else fun. when you're laying on your back and we're sitting towards your feet, you'll start kicking your legs around and prop them up on our thighs, or our hands, or whatever you can reach. it's like you just wanted to play footsie with us or something. i love it=)

it's been fun (this is going to sound weird) realizing that i'm a typical mama. getting so giddy excited when you gain weight, or when you hold your head up by yourself, or when your discover your fingers...lots of things make us goofy sweet girl=)

ok so i wanted to tell you what i've been learning lately. you know how mommy told you that i get anxious a lot of times? i had been thinking about how that's not going to help anything and what can i do about it. God was very sweet and gentle in bringing to mind this verse. it's philippians 4:6-7 and it says "do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. and the peace of God which transcends all understanding will guard your hearts and your minds in Christ Jesus." it made me laugh a little bit because it's so obvious, isn't it? i just imagine God finally saying "well my goodness-it looks like she's not gonna get there on her own so i'll just remind her that i said something very specific to help her when she's anxious..." and so here it is. i feel like it's so simple, but as we know by now, i operate better when things are that way. i've been just telling God the obvious-things i worry about so much like when i think people can't take care of you unless they're me (i'm laughing on the inside as i type that)-incessantly-to the point that i feel out of control a little-like i know it's not reasonable to worry like this but the truth is that i am worrying that much and i need His help. and i just ask Him to take care of it for me and help me to realize continually that He's in control and you are His and therefore in the best Hands possible...and it's been helping=) i realize that i really do make being a child of God more complicated than it is...and i guess that's a little bit of a relief;) it's sweet when He shows us that loving Jesus with our lives and living in a way that brings Him glory is actually do-able. how nice. i think i'm rambling-you'll get used to it i think=)

i love you baby-you are our heart's delight and we are so lucky that you are ours.


Tuesday, January 20, 2009

bathtime laughter video

hi sweet girl=)

this is a video of you and your goofy daddy=) you love bath time! daddy is laughing like a goon which in turn makes you laugh...which is why he keeps doing it;)

love you sweets-

and even more pictures=)

here are some pictures from around christmas time...

grandaddy bending over the back of the couch to play with you-he loves you very much=)

you and daddy loungin' around

me and my girl=)

and even more pictures...

snuggle faces

family christmas tree picture

holding on tight to santa's beard!

smiling like a sweet girl at grandaddy

giving gigi sweet morning time smiles

having fun with grand-e-pa


here are some pictures from when you went outside on a chilly day!!!

papparazi-you're getting used to it...

an empty hummingbird feeder is not very interesting, but you liked the red color!!

little cuties=)

sweet face=)

more photos...

smiley girl=)

you love your daddy very much!

you've discovered how to put your hands in your mouth...

probably wondering when all this picture-taking will stop...

aunt nikki made this for you-it's hanging above your crib. do you remember a letter daddy wrote you last summer? it was about two verses-one he would think of if Jesus had taken you on to heaven, and one he would think of if He let us keep you-this is from 1 samuel 1:27 since we got to keep you=)


Here are some pictures from when your grandparents and great grandparents came to see you!

you and grand-e-pa (that's what he's named himself...we'll see if you catch on)

you and Big D (also what he named himself-28 years ago!)

a good lookin' girl with 3 good lookin' men! 4 generations of Davises (sorry baby-i still don't know how to make our last name plural)

gig and grandaddy holding you=)

you smiling with grandmama and papa

you have another great grandmother coming to see you soon! she can't wait to get her hands on your sweet girl=)

Thursday, January 15, 2009

happy new year=)

hi sweet baby!

i'm sitting on our living room floor and you are laying next to me. you are snoozing and very sweet-you'll still smile in your sleep sometimes and i love it=) you've been home for over a month now and you've been very busy learning things and having first holidays...i guess it started out a little scary on christmas eve-we were changing your trach and it wouldn't go back in=( no fun for any of us sweet girl. but to make the story much less dramatic, i'll just say that we ended up putting the smaller one in and you were just fine after some snuggling and patting of your head=) a couple days later we went to the ER to see if they could get it back in but nobody could there either. they said some scar tissue had probably formed and it's just not gonna fit anymore. so now you have a trach without a cuff and you have a pretty big leak around it but you don't mind that. your surgeon said that if you tolerated that well, then he would rather you have the smaller one because it's basically just one step closer to getting rid of it. so after a little drama on christmas eve, you and your daddy and i had the most precious quiet christmas together. we watched movies and made chicken pot pie and opened the few presents we hadn't already opened (daddy has a habit of opening everything early-i'm not sure if you'll join him in that or help me get him to wait) and we thought about how thankful we were that you were here with us celebrating christmas=) then new year's weekend was fun because you got to meet some of your great grandparents. grandmama and papa came up with mommy's parents and there was lots of studying new faces and laying in laps and kisses and picture taking. it was a very sweet visit and i'm so glad you three got to meet each other. three more of your great grandparents are coming to see you over the next month-they are so excited sweet girl-it'll be lots of fun.

we went back to charlottesville last week to see the surgeon who fixed your diaphragm and put in your trach. his name is dr rodgers-and we love him so much. i can't remember if i already told you this, but he's very grandfatherly and we think he's so great. when you were in the hospital he used to pick on mommy by coming around every day saying daddy should hold you all the time because you did better in his arms, and he also wanted to make sure we weren't spoiling you too much;) he was always joking sweet girl. i think he knew that if we weren't there to love on you then your nurses would pick up where we left off and give you lots of attention. we think babies who've been through what you have deserve to be spoiled beyond reason=) so anyway you had a chest x-ray done that day and he said it looked good! that your smaller lung was growing-almost full size but not quite-and that the pocket of fluid that had always been at the bottom of your left chest cavity was gone=) he said the stoma (the skin around the hole where your trach goes) looked great but that he was concerned that you might not be getting enough attention-he wanted to make sure santa came to see you and such. he is silly=) he'll be the one to take out your trach, but he doesn't necessarily make the decision about when to do that. he said he couldn't say for sure with you (because he doesn't do the tests to see how your lungs are really doing) but that from his experience he would guess you'd need the trach for 6-9 months. that would mean you'd get it out between may and august. that is WAY earlier than mommy ever thought so i'm trying hard not to get excited about that. but that's kinda impossible. i was figuring 2-3 years, 2 if we were lucky, and i'm trying to keep my expectations there but i can't help but be excited about the possibility of this summer. wouldn't that be great sweet girl? oh i can't wait. we see the cardiologist and pulmonologist at the end of this month so we'll see then how your lungs and pulmonary hypertension are doing. all fingers will be kept crossed=) then we see dr rodgers again in april-he'll just do another checkup and also schedule a time for a bronchoscopy. he'll do that to check and see if any scar tissue has formed in your trachea that could potentially cause problems with your breathing once they took the trach out. he'll take any scar tissue out before he takes out your trach, but again we don't know when that will be. one day we'll leave you alone, i promise=) all we'll have for you is hugs and love and kisses and patty-cake and jump rope and only fun things. no more poking and prodding. soon enough my love=)

then we saw the gi (gastrointestinal) specialist this week. this is obviously a big issue for you sweet girl. you're 12 1/2 lbs and that's great! he was very pleased with how you were growing, but the issue is HOW you're getting your food. it's still all through the ng tube-and it seems like you like breastfeeding even less than you used to. i think you've successfully breastfed 2 times the whole time you've been home. i can tell that once you get any substantial amount of milk in your mouth you get upset and cough and choke on it a little bit. that's no good sweet baby. we've got to get you eating like normal...early intervention (they help with children up to 24 months who are disabled in any way) came to the house today and evaluated you for their services (education, speech therapy, occupational therapy, or physical therapy)-you definitely qualify because of all your gadgets and we decided occupational therapy was the most important because they help with feeding issues. we set some goals for you to work towards-mostly with things like getting milk in your mouth little by little, and also with holding you like superman in the air to simulate "tummy-time" and help you with your neck muscles. we sit you up sometimes and you do pretty well with holding your head up, but you still need a little extra help since we can't put you on your tummy too well. daddy loves the idea of holding you like superman. you two already started practicing after your bath tonight=)

i love you very much. you are the most fun. you are so happy and we are amazed by that every day. there are lots of things you're doing that early intervention was very impressed by! things like watching us walk across the room, or rolling from your back to your side and then to your back again, or focusing on whatever it is you've decided you're interested in, or how you get when we walk up and start playing with you-they call it "anticipatory excitement"-you start smiling really big and flapping your arms and kicking your legs around because you know you're about to get some attention-they like how you bring your hands to your mouth and how you reach out for toys and hold onto them and try to chew on those too...we think you're doing great sweet girl-we are so proud of you=)

mommy and daddy are still figuring out our new routine. we haven't gotten a nurse yet who quite works for us. just hasn't clicked yet for one reason or another. mommy sometimes feels really bad for saying no to people, but i have been reminded many times that i am your voice and your advocate and this is definitely a good time to be picky. so we are=) it's been working well though-daddy has arranged his classes and meetings and clients on two days a week, and then i work on 3 of the other nights during the week. i am lucky to be able to share you with such a great daddy, aren't i=) he lets mommy sleep as much as she needs and he loves you so much-i always heard how you fall more in love with your spouse when you see them with your's cheesy and true sweet one. he gets so excited about you-he was in california for a conference a few weeks ago and when he got home i was just putting you down for bed. you were half asleep but when he started talking to you you woke right up=) you started smiling really big at him and that was the first time we really noticed you flapping your arms and legs around. it was the cutest thing-i have a video of it and we love watching it over and over. needless to say, you made your daddy's day=)

i was emailing with a friend the other day and his questions got me thinking about how i'm doing (like down deep) in this little journey of ours. i realized that i've been missing God lately-i will try to explain. there is absolutely no doubt whatsoever at any second of the day that He is very near to us and holding all three of us closely. i feel His warmth and comfort and security-but i just miss certain things. i want to say i miss growing and learning, but there's no doubt that i'm growing and learning more than ever before. i think what i mean is that i miss community fellowship and all the richness that comes from that, you know? we have dear sweet friends there and i miss connecting with them and the blessings God has for us when we invest and are invested in. we haven't quite figured out how to go to church or small group consistently-well i guess to be honest it's not that we haven't figured it out, it's just that i don't want to leave you. daddy is much more level-headed than me. we want to take turns going and so he goes when it's His turn, but i just have a hard time leaving. i pray that God will help mommy balance all the things in my life. you and daddy and i all need for me to do that. we'll all be better off if i can figure that out. a different family from the church brings us dinner on tuesdays and thursdays, and we love when they get to come in and see you and visit with us for a bit. again, it's just that little bit of connection with people we are living life with. mommy needs that. they are such precious people=)

but i wanted to show you some of what i wrote back to my friend i was emailing with. he asked how my heart was, and then was referencing the magnitude of having babies and what God shows us through the whole process (he and his sweet wife just had their first baby too). so this is what i said back to him...."yeah it's crazy huh? why in the world is He letting us in on this incredible thing? how is it that we get to share in that? webb [his son's name] is spectacular-it is no less unbelievable with healthy babies. but i have kept thinking over the last 5 months-why has He let us keep her? i have no idea. i am no doubt (this is such an obvious statement) nowhere near the parent that God would be to her if she were in heaven, yet He has blessed us beyond belief by letting us get to know her personality and her quirks and what her eyes look like when they light up and she laughs her silent laugh because the trach won't let her make noise. i can't believe any of it. i want to give Him a big hug and thank Him over and over. i love how mysterious He is, though. how i can't understand what He's doing, and how i know He's gonna keep it that way. it makes me feel tiny yet insanely significant at the same time..." that's basically a summary of how i'm feeling lately. mommy can get pretty anxious (i'm gonna go ahead and apologize for how that will bother you in the future-it bothers me too sweet girl) and it's so sweet how God will give me a little glimpse of the big picture sometimes and calm me down. Lord knows i need it=)

i love you sweet baby. grand-e-pa and big d (daddy's dad and grandpa) got here today. they drove up from georgia to play with you this weekend! it is their first grandchild and great-grandchild, so it is very precious to see them with you! so far you've thrown up on them a few times, and they've watched you get a bath and trach care-the three of you have had fun staring and smiling at each other=) it's funny how little it takes to entertain us when a sweet baby catherine is involved=)

it will be a great weekend-i can't wait to show you pictures=)