hi sweet baby=) you have been doing great things since my last letter! first let me tell you, aaliyah mysteriously quit coming around about a month ago, but now you have a new nurse! pamela! we love her and she seems to plan on being around for the long haul. we are so thankful. mommy registered to start classes again this summer and it would be basically impossible to do that if we didn't have a third person on board to take care of sweet you! you had your 6 month check-up and all was well=) you were 14 pounds and that put you around the 20th percentile for weight. you were just above the 50th percentile for length and right at the 50th percentile for head circumference. those are good numbers=) you are apparently becoming a little more proportional-you used to be the 95th for length and the 5th for weight...good job baby=) you are a rockstar with your head. you hold it up like quite the champ. you've gotten strong enough to hang out on your tummy like it's nothing. you just lay there and push your chest up off your ventilator circuit and trach so those don't bother you, and you just look around like a nosy little precious thing. you roll from your back to your tummy and then back again. i can't say you've quite mastered that skill, it's still kinda messy, but you do it and daddy and i get ridiculous over it. i think i took no kidding 6 videos the other night of you just rolling back and forth=) you're getting closer and closer to sitting up by yourself. not quite there, but we're working on it. you're so good with your hands-grabbing at things and reading your books by yourself (which means you hold them above your face, usually upside down, and stare at them for a little bit) and everything goes in your mouth. you're on the brink of bustin' out a tooth which requires the occasional dose of tylenol. i love your little slobbery self and knowing that just means you're growing like you should. can't wait to see those teeth. we went to the pulmonologist a couple weeks ago and that was a great visit too! i knew you'd been doing well respiratory-wise...your rate had come down so much during those few days you were back in the hospital and i hadn't noticed any problems since you'd been home...but when dr schmidt came in he almost looked giddy! i loved it! it made me suddenly remember that it was appropriate for mommy to be so excited and i got right on board with a big smile and eyebrows raised and everything=) he was basically commenting on how well you did in the hospital with the lowered rate and then he was talking about what his new plan was. he lowered your rate from 15 to 12 while you were in the office and then he said somebody would come out and test your end tidal co2 and if it was ok i could lower the rate again to 10. well they came 2 days ago and your co2 was great!!! so now you're on a rate of 10 and dr schmidt said once it was around 8-10 he would change you to cpap and then the next step after that would be taking you off!!! we are happy=) so you have a cardiologist appointment next week to make sure your pulmonary hypertension is still improving while your ventilatory support has been decreased, and then we see dr schmidt again a few days later. i can't wait to see what he does with you=)
so sometime that same week you saw your gi doctor again. you are still throwing up a lot, so we all agreed that it was time for you to get a g-tube and a nissin (mommy doesn't really know how to spell nissin). this means that you will have a tube placed surgically through your tummy into your stomach and you'll get fed that way. there's a good chance your ng tube (the one that goes through your nose to your stomach) is kind of stopping you from learning how to take a bottle, and on top of that you HATE when we have to put a new one in every week and the tape covers up your pretty face! the part i'm especially excited about is the nissin-this will basically give you a sphincter between your esophagus and stomach. (the fact that you had no diaphragm on the left side made the part that was supposed to be a sphincter really loose and therefore it's really easy for food to come back up through your esophagus and that makes you throw up a lot) i was a little worried at first that it would make you really uncomfortable-like when you needed to burp or if you were too full and you did actually need to throw up...but they said all i have to do is vent your g-tube by opening up the little cap that will be on it. problem solved=) so much of our day revolves around keeping you laying down during your feeds (which take over an hour and a half to go in!) and then we have to keep you still for so long after that too. it ends up that you're maybe up and moving for 45 minutes before it's time for your next feed and we all start over again. so hopefully this will help us be able to feed you quicker, get you up and moving sooner after a feeding, and maybe it'll be easier for you to drink from a bottle=) it does make me sad again to think of you in a hospital and especially having surgery-it actually just makes me sad to think about you having to go through anything potentially painful or stressful without me next to you. if only they'd let mommies in the operating room=) dr williams, your gi doctor, wanted dr rodgers (the surgeon who fixed your diaphragm and gave you your trach) to do this surgery because he already knows your anatomy and you're a little complicated on the inside. hopefully they'll be able to do it laparoscopically and you won't have another big scar-just a little one=) this will make 6 scars sweet girl-you're very tough and will have lots to brag about if you turn into a tomboy one day=) so we go to charlottesville tomorrow to have another upper gi series done (they give you some liquid through your ng tube and then take a series of x-rays to see where the liquid goes-if you're still refluxing or if those parts are working better, etc...) and then we'll talk to dr rodgers about the risks and benefits of the surgery, etc. PLUS...we get to see your old friends from uva's nicu-what a treat=)
also during the last couple weeks you experienced your first snow!!! it was quite a snow too. richmond got something like 8 inches. mommy is from much further south and wasn't quite sure what to do with it, but i must admit it was beautiful and i felt like a crazy lost tourist as i went outside in my rainboots and sweatpants taking pictures while all the other native virginians shoveled off their walkways and scraped the snow off their windshields. goofy mommy was just staring around in amazement snapping photos=) and when i say you "experienced" it, i mean you watched from the window. it was all we could do to not take you out in it and get at least one picture, but i figured if anybody saw that picture they'd take you away from me;) cold wet weather is probably not the best for you right now sweet baby=)
and then oddly enough, 4 days after the snow was falling it was a sunny 80 degrees!!!!!!! this makes mommy much happier. we took you for 2 hour walks and daddy convinced me you were finally ready to go out in public. the three of us went on our first date to "su casa", a little privately owned restaurant not far from our house-we had met the owner before and he was honored that we chose his restaurant as your first dinner out. we explained to him that we came early so maybe we wouldn't disrupt other people's dinners when your machine started beeping...and he thought we were silly and wasn't the least bit worried about it. he loved meeting you=) his name is nick and he is great. and you were great too! you sat there in your car seat talking to daddy and me and laughing at things. it was very good for mommy's soul to get you out of the house. sometimes i think i get very sad about not being able to take you places-i suddenly realized when we took you to five guys (another restaurant) a couple days later that i actually felt like a mommy. is that strange? that i need to have you in public to actually feel like your mommy? i'm fairly positive there's more to it than that but it still felt great. i like to show you off sweet girl, even if sweet little 8 year old girls pass by us and then ask their mommy why that baby has a tube on her face=) it doesn't bother me-i think you're pretty amazing and they do too.
the first couple walks we went on you weren't quite sure what was going on. there were no smiles or laughs or coos, but there was no crying either (although you would get a little grimacy and grumpy when the sun would get in your eyes). you were just very serious. taking in the sights, wondering what those big things were that mommy and daddy call trees or what these loud things are that go driving past you so quickly. you were funny because even then you weren't even remotely affected when dogs would bark at us from behind their fences. stoic little thing. and then a few days ago you decided you could get on board with these walks. you started laughing and smiling at things we would pass and every now and then you would arch your little back and look up and behind you to find daddy and me. then you'd meet our eyes and start smiling, like you were asking us "did you see that house?" or "do you feel that wind? amazing!". we like imagining what you are thinking. our favorite part was when we'd just be walking along and suddenly hear you start talking to us-making your little noises (that's new by the way-the leak around your trach has just recently gotten big enough where you can make noises on purpose! it's the most fun thing to watch-you and daddy have conversatoins where you two will say "aaah" back and forth at each other for 10 minutes straight. it's great=)). but on our walk you'd start making your noises as you look out over the rim of your stroller-not sure if you wanted our attention or if you were just commenting to yourself and making mental notes about all the new things you were discovering...we wish so much we knew what you were thinking sweet baby=)
so yes. getting out has been very good for mommy, and i think you have enjoyed it too. so many good things have been happening with you, but for whatever reason mommy has been a little blue. i guess that isn't even the slightest bit surprising. when i talk to people about it they all say of course i'm sad sometimes and that we've got more than our fair share of stressors, etc, etc...and i suppose that's true. and i'm missing home. and by home, i mean georgia. i wonder if that will ever be home to you?? i was reading some of my friends' blogs from our church in marietta (elaine, bekah, ann, caroline...) and it made me miss so much about it. probably mostly just comfort and familiarity...there's not much of that in what we've got going on here lately, is there baby?? what am i talking about. it's all new to you. you're not even 7 months into this thing. but i do miss our church so much. something about it. i suppose God has us here (richmond) on purpose-and He has put mommy specifically away from that church in georgia in order to teach me how to find fulfillment in Him no matter my physical location or who i'm surrounded by or what kind of worship music i'm singing or what the general cultural climate may be in the sanctuary, etc. etc. i think this is a tremendously important lesson to learn. i'm not quite there. i still miss the "feeling" i get walking into our old church wondering what God will do today, what does He have to teach me, how will i be forever changed after hearing this sermon. this is most definitely, without question, an issue with me rather than an issue with the actual churches i'm talking about. our church here is phenomenal. daddy and i both knew the first day we visited that, although it didn't quite look like what we expected, this was the church where God wanted us. our pastor kevin, who also happens to be one of our dearest friends, is unbelievably gifted. and he's super cool with a crazy cute kid and the greatest, funkiest wife i've ever met. i want to be like her every day. and our church community is incredibly invested in and enthusiastic about you. i think they would come to our house and take you from us (in a good way, if there is one) if they thought they could get away with it. last sunday sweet betsy made me get up at the end of the service and give an update on you. mommy gets very nervous when suddenly forced into the center of attention in large crowds-i'm awkward and try too hard to be funny or something and it's painful. i used to not be like this. i'm sure it's yet again something deeper i should be working on. confidence issues and what not. gosh i hope you don't struggle with this too much-guess i better get straightened up pretty quick before you notice;) so needless to say-God is so sweet and i have no doubt He is working constantly to teach me what He wants me to know-chiseling me down to what He's calling me to be-the best mommy for you and the best wife for your daddy, the best daughter to your grandparents and the best sister to your uncles, the best friend to your many pseudo-aunts...only He can do it. and i know this season of waxing and waning between elation and despair is part of that. no doubt. i will come out being a more perfected version of me. i pray that you receive only the benefits of that=) mommy has great friends-the other day i went to dinner with libby, the funky one who i want to be like (remember her? she's isaiah's mommy? the one with the big pregnant tummy in a picture with mommy from last may??) and it was amazing how healing it was to talk with her. she is a new mommy too, and it's pretty comical how well we could relate to what the other one was saying. i talked with daddy last week and also dr lucas and some other people about things i should be doing to make me less of a roller coaster. so i went running for the first time in over a year!!! before the morning sickness set in with little you in my belly i would run every day and now it's been almost 14 months! that's a little embarassing. but it was great. and my legs are still sore from it=) daddy let it be my turn to go to church, and then of course taking you on walks every day while it was sunny and warm and going with you and daddy out to eat...these are the things that make me happier and much nicer to everybody=). i tell you this because i want you to know all of the story, the pretty parts and the ugly parts, and because i know you'll be in my shoes one day and you'll be a new mommy learning how to navigate that new world. and it will be wonderful=) it is real and raw and there are ups and downs and you will also have a fantastic man to walk beside you during all of it. and neither one of you will be perfect, but it will be beautiful nonetheless. so yes-mommy got outside and took you places and apparently sunshine has magical effects on my spirits. i want you to know something else. it's very important sweet girl. i want you to know that you are an absolute joy. and none of the sad parts are your fault. we wouldn't give up a millisecond of those stressors if it meant we wouldn't have you. every time i think about telling you of these valleys, i debate whether i should or not because i'm so afraid you'll blame yourself. my goodness-you're barely over 2 feet long. how could it be your fault? anyway, i'll take a billion of these stressors any day if it means i get sweet you in my life. you are the greatest gift and such a treasure. i keep thinking of the verse zephaniah 3:17-i think i told you about it when you were still in my tummy-this is what it says "The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." perfect. He has always been with you, He is and was mighty to save. you are here and thriving and evidence of that every day. i still love to imagine Him in heaven watching you with that sweet elated smile on his face, dancing and singing when He just can't contain His joy over what a marvel He created when He made you. and i think He "quieted you" while he gave order to your insides. slowly but surely. partly through the skill of your doctors and partly through breathing His healing breath into you and slowly performing little miracles, bit by bit, vessel by vessel, alveoli by alveoli. you are unbelievable and therefore so is He. and vice versa. it's fun how that works, huh? i can be feeling very sad and have little tearies in my eyes and then i look over at you and you are watching me and i can't help but smile and you start smiling back and poke out your tongue like you do. you are becoming more and more fun every day. i have the hardest time leaving you to go to work. or just to take a shower. that's kinda funny. i just want to lean down next to you and rub your sweet little head and smell your hair and give you kisses and feel you kiss me back. and feel your sweet tiny hands reach up to play with my wet hair (after i do finally take that shower) or your feet push against my legs. you go crazy with those legs=) you are our greatest delight and i'm so thankful for you and your smile and how you wiggle your little booty around and smile with your eyes. and how if i lean down over you and put our faces close together you'll reach up and hug me. i like thinking that's what you're doing at least=) (more likely you're just trying to pull my hair). and how you always reach up to hold onto our shoulders or arms when we're reading to you. you are the best remedy to any mommy blues i could ever have. and i am so thankful for you=)
i love you baby.
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