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 child...it'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..."...so 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=)

mommy