Kinship Adoption

In many ways I think that kinship adoption is much more challenging than typical adoption - for everyone concerned. One of the big things is that we weren't looking to be parents, at least not of this child. I wouldn't trade her for anything in the world, but the lack of intention really has completely shaped the way we've grown into being parents, a family. I joke that we had a three week gestation period, but, really that's pretty much what happened.

I am frequently told that I "saved" my child; and it is suggested that K and I are some kind of heroes. I am most definitely not a "hero" or a "savior," and, while I am so glad that I have VeeGee and she me, I would much rather have had her have a happy and safe home-life with her birthmother. I refuse to buy in to any "meant to be" stuff because that means that VeeGee's suffering was "meant to be." In my heart, somehow, there was a place that VeeGee definitely moved - way before she became my daughter or was taken from her mother - and I can't explain that except to say that, maybe, the mom in me was already clued in to what was happening to her and was preparing me to be ready. I did know, somehow, that she would end up with us. But that did not make me happy because it was a result of suffering.

As to her birthmother: I have known this young woman since she was six years old, loved her as a sister. She is, and always has been, a very sweet person. She's had a VERY fucked up life. She was WAY too young to be a mother to any child, and VeeGee's severe and multiple disabilities made it even more difficult. Her and K's mother, who died last October, had very very involved multiple sclerosis and was completely bedridden and needed as much involved care as VeeGee did. Her father, who hasn't worked since she was born, has the worst raging temper of anyone I've seen. They lived in the grossest squalor I've ever personally witnessed.

Birthmom's biggest "crime" was that she refused to accept help when it was offered to her, she let her pride get in the way. It was very costly, almost to the point of VeeGee's death. I call it abuse because that is what DCS called it, because that is how I "read" allowing your child to suffer the way that VeeGee suffered, though I understand that many would call this neglect - I guess, for me, for now, "abuse" is a semantic coping tool. I also call it abuse because I know, from witnessing it firsthand, that Bmom's father was very rough with VeeGee (and his wife) when attending to her needs, and that she allowed that to happen and continue. Still, in my calmest moments, I know that Bmom really does love her and just was, herself, disabled.

I got an e-mail this morning from Bmom thanking me for allowing the visit last week. She apologized for the short notice and promised to be more consistent with her contact. She also sent me, per our request, a picture of VeeGee's bdad. Zoiks! He could be K's brother, which explains why VeeGee looks more like K (her half-uncle) than Bmom.

In the end I know beyond everything else that I need to work on being as peaceful and generous as I can within the bounds of keeping VeeGee safe. Anger does not a good mother make. I'm hopeful that we can grow into a peaceful relationship. I am not going to co-parent with Bmom, but I do want VeeGee to have as many people around her that love her as she can.

Surprise Visit - Part 3

It was a crazy day because of the fact that we waited all.day.long for K's aunt to arrive from Chicago - the flight that was supposed to get in at 11:45 didn't get in until 5 (bless her heart!) because of ice and whatnot. We were pretty much in limbo waiting for updates and so K was actually home most of the day with VeeGee too, so we got lots of family time (oh, and one of our dogs ran away and we had to go looking for her in the ice/rain for an hour - we eventually found her, the brat. VeeGee is still walking around hollering, "Sula, w'ah you?" ).

So, we finally got out to grandparents house after dark at about 6:15, which is something I explicitly did NOT want (an evening visit). VeeGee had fallen asleep in the car (of course) and had a giant poopy diaper. I had to go directly in and change the sleeping baby, which was actually great for me to kind of catch my breath and re-rehearse with VeeGee the names of the people she was about to see. I asked her if she wanted to walk out there and she said "no" - odd because she LOVES it there, it's like her own little queendom, the way grandparents' houses often are - so I carried her, with her head buried in my neck .

Her reaction was strange. I said, "Oh wow, look we have friends here to see us! Look, there's Grandaddy and Uncle T. and Bmommy (we are using her first name), do you want to say, 'Hi'?" She clung to me pretty hard and when I walked closer to anyone, even her grandparents that she knows and loves, she turned away. It was odd because she had been chatting it up with the aunt that we'd picked up from the airport.

Anyway, so that went on for a while. She finally got out of my lap and huddled behind me on the couch. Eventually she started kind of doing the peek-a-boo thing and then, when she realized there were PRESENTS!!!! under the tree for her (!!!) she climbed down and went to it. That was lots of fun and I was impressed with the presents that they brought for her - they'd really actually thought about it, which was just really really wonderful. I thanked them a bunch.

It was also nice because we could all sit there watching her without the need for much conversation. As K said it later, "She was ON! Like a rockstar!!" I mean she was giggly, happy, and all-around hilarious to watch. We had to stop her or she'd have opened all the gifts that weren't for her (though I doubt anyone would have cared). She also sang with the music that they had playing (through the Christmas tree - tinny Christmas carols that made me want to cringe after just a few minutes ).

By the end of the evening she had given out plenty of hugs to everyone, said lots of thankyous and iloveyous and Birthmom even got a snuggle and a picture.

When we got back in the car she actually said, "Whew!" and then a little later, "No more people mommy, daddy." We assured her that that was all for the evening. And then we did our nightly Christmas light tour. All in all it was a pretty remarkably wonderful evening.

For me, it was deeply, deeply special that she clung to me and was very clear in her attachment to me. We've really worked so hard for this and it was just a blessing. In a way, too, I think that it made bmom feel good - at least she seemed to be pleased and amused - to see VeeGee confident in her place with us. During the entire evening there were no name slip-ups (a huge relief) and both bmom and grandaddy referred to K and I as daddy and mommy.

We know that there's a very good chance that we won't hear from them again for a long time (though bmom, who had thought she was coming for New Years instead of Christmas, said that she had ordered presents for VeeGee that weren't scheduled to arrive until after Christmas and that she'd send them along when they came in). Still, for the evening that it was whether it was a one-time thing or not, it was good.

Merry Christmas.

Surprise Visit! Part 2

Okay, so we're going to the grandparents today at 11:45 for The Visit. I've been preparing VeeGee all morning by showing her pictures of her birthmom (which she really hates to see for some reason) and her grandaddy. I've also spent a bunch of skin-on-skin time with her laughing and tickling and doing deep pressure therapy. Finally, I've been helping her pronounce birthmom's name (we've chosen to use her first name just like we've done with her other aunts and uncles) and telling her about who all is going to be at the visit.

We also decided to pick up K's aunt who's flying in and take her when we go so that there will be more than just the VeeGee-bmom-grandaddy "event" going on and so VeeGee will feel less pressure to be the focus of everything.

Y'all, I'm so nervous, and sad, and worried. But I'm trying to leave that gunk here instead of bringing it out there. I want VeeGee to read total safety and relaxation coming off of me so that she can also feel those things.

Surprise!

We just got a call a little while ago that VeeGee's bmom is going to arrive from across the state this evening and is staying until, well, we don't even know, could be New Years. This is the first we've heard of it (they weren't even the ones who called to let us know) and we already have a houseful of children that we're watching for my sister (OVERLOAD CITY!!!!!!!!).

We also found out that they ("they" are bmom and her father) have been lying and telling K's grandparents that we don't return their calls and never call them. Holy SH*T!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We have received exactly three phone calls from bmom since bringing VeeGee home. That would be three phone calls in almost two years. And we've sent e-mails, birthday videos from VeeGee, and have called many many times (they don't answer their phones because they dodge bill collectors constantly and/or have them disconnected).

K. I are so angry we could spit.

(P.S. It's really and truly not that we want to keep these people away from VeeGee- it just needs to be on OUR terms which are based on care and concern for VeeGee (things which clearly they do not have).

One of the things that is so amazing and painful about this is that K's grandparents (also birthmom's grandparents, my de facto mother and father -in-laws) consistently seem to choose sides on this, and the side that they choose is bmom's: the one who WILLFULLY abused and neglected VeeGee (the child they absolutely adore), almost to the point of her death. Basically, they are calling us liars when we tell them about the lack of contact.

We always invite K's grandparents for Christmas Eve (they have never ever come because it's mostly the evening that we spend with my dad and his dad, who is their ex-son-in-law - they HATE both my dad and K's dad) and I think they expect to be invited also. For me, that night is the most important and meaningful part of the entire season and is pretty sacrosanct. I'm just not ready to bring them into the mix.

Generally we don't even see his grandparents on Christmas - sometimes the day after, but usually we wait til New Year's Day because that is K's grandfather's birthday.

The way they are, I'm pretty sure that they just expect us to drop everything and go to the grandparents tomorrow and the next day. I'm so up to my eyeballs with VeeGee and my sister's three kids (one of which is a one-year-old), I just need to stay in one place. Not to mention the fact that I'm hosting dinner on Christmas Eve and have to get the house ready (in the midst of all these kids!) for the company that I was already expecting. I've already bought food, too, so that would be another thing . . . . . UGH.

Okay, so we'll call them "InchStones"

VeeGee licked pudding off of her fingers (three weeks in a row!!!!!!!) at feeding therapy without coercion OR gagging!!!!!!!!!!!!!!!!!!!!!!! Yesterday in speech therapy they were playing with play-doh and her therapist cut out a "cookie" which VeeGee, with a bit of doubt in her eyes, picked up and licked (I guess she's starting to get the hang of the routine!). However, she was none pleased with the taste and said, "Play doh tastes yucky!" (Also an inchstone!!!!!!!) Yes, VeeGee, play-doh is yucky tasting. But YOU ROCK!!!!!!!!!!

Social Rejection

In some ways it was easier when VeeGee had her trach, because there was a clear outward "signal" that something was different. Now, without it and because of the jaw distraction, only her size signals something different (until someone speaks to her, of course). What we were noticing tonight is how she just doesn't try to communicate with her peers verbally. Her only words are "uh huh" AND "uh uh."

So someone asked, “Can you find some other families with special needs children for your child to make friends with?” Well, you know, that can be problematic for several reasons. One of the main issues, for us, is that we want her to be able to mimic the speech of typical kids as opposed to other kids who, like her, have a difficult time speaking. Also, well, I'd like her to be able to live in the "real world" and not a little enclave of SN people. Besides, the spectrum of special needs is as broad as the spectrum of typical people - so it's not like you can "go shopping" for someone who is just like your kid.

I know that wasn't mean to be offensive, but, I have to say, it kind of was.

For the record, VeeGee has always been in a school with 50-50 kids with SN and "typical" kids. I am most certainly NOT living in any sort of fantasy world about that (well, beyond the occasional, "Wow, this is our reality" kind of thing that, I'm guessing, is something at least SOME of us feel at times).

One thing that I think informs my feelings on this subject is the fact that I have a 16 year old brother who has Down Syndrome and I have seen him in both sorts of situations: inclusive and not. He spent his first thirteen years in schools that were completely special needs oriented - though my parents worked very hard to have him involved in extra-curricular activities where he could also be around "typical" kids. Now he is in a school that is primarily a typical school, and he has a few peers who have special needs.

What I have seen, firsthand, is the way that he has really thrived in both environments, though, now, as he grows older, it is entirely appropriate for his world to begin to expand to include all types of people because - fact of the matter: he will have to live in the "real world" at some point (hopefully!).

As to the quality of relationships that he experiences, and the concern about their potential superficiality, I think, truly, that he experiences most relationships just as they are. He most definitely has real reciprocal relationships with typical kids. They are no more "superficial" than the relationships most people have with each other. Obviously, they are different than the relationship two typical teenaged boys would have with each other, but I don't think they are qualitatively less mutual or rewarding.

I am not looking for my daughter's friends to be her therapists. I am, like any mother, hoping that she will be able to learn good things from her friends. All mothers, I think, try to facilitate relationships for their children which they think can benefit them. Why is it wrong for me to want my dd to be around children who are modeling a strength/skill which she lacks? That doesn't put any onus or burden on her friends to be anything other than exactly who they are. F what it's worth, VeeGee's two "best friends" (insofar as kids her age have "best friends") are typical girls who, somehow, understand her attempts at language. They play and "talk" to each other.

I don't disagree that it is/will be important for her to be around and have the support of other children with disabilities. She gets plenty of that even now through her daily therapies (several of which involve group play) and through playdates and whatnot. I'm not trying to pretend that she's not disabled - that would be virtually impossible - I just want her to have access to as many types of friends as she can have - black, white, special needs, disabled, typical.

We were at a party the other day with some of VeeGee's typical friends. I'm noticing the deepening chasm between her ability to communicate and theirs. It's making her more and more awkward. One on one she does really well with typical kids, but in this particular situation (which was uncommonly frenetic - a birthday party in a very small house, with no outside access) she just defaulted to "playing monster/tiger" and chasing the kiddos around. It was cute at first, but then dh and I both realized that it was continuing because VeeGee just didn't have any other way to interact with the other girls there. Cognitively, she functions on their level, which is what makes this harder, I think. So, we're wondering, "does she know that they're ahead of her verbally? How might that make her feel?"

Oh yeah, she's disabled.

You know how, sometimes you've been trucking along for a while almost forgetting that your child has a disability, and then WHAMMOOOO - it slaps you hard across the face to remind you that, oh yeah, it's still there - never left?

That's where we are this week. And I'm really not doing okay with it. Neither is K

I know it's going to be okay - it just feels really rough right now. VeeGee's therapists confirmed her need for AFOs yesterday (I know that's not really a big deal) and today with her OT was just WAY emotional. They think she needs to also be seeing a psychologist to help her deal with some of the abuse/neglect issues that caused her to be taken from her birthmom and that are exacerbating her already pretty severe SPD. I'm just so so so sad for her. And freakin' pissed at her birthmom/grandfather.

And tonight I have to get up in front of a bunch of people to read from my book that I don't even care about any more. I'm having DH introduce me at the event and we're both just kind of shell-shocked so we have no reserve of humor/wit/savoir faire to bring to this tonight. And, VeeGee, of course, be in the audience yelling at me, I'm sure.

I'm sorry to whine.


Oh, and we've totally nixed the feeding stuff. . . . . .

The Menagerie Family

VeeGee doesn't name her stuffed animals (and doesn't like dolls for some reason). She has a lineup that goes everywhere with us () that includes Charlie (a tiny white and black dog that I named), "Brown Monkey" (who is white), "Other Brown Monkey" (who is brown), "Elephant," and "Mahma Bear" (panda bear). In this little family "Charlie" is the baby, "Mahma Bear" is daddy (because they're both black and white, I assume, and K and VeeGee are basically carbon copies of each other), and "Other Brown Monkey" is mommy. : They're always hugging each other and saying, "I miss you so much!"



off to swing from the branches now . . . . . . .

Why I Don't Use Time Outs

I don't use them for a few reasons.

First off, my daughter is an only child - always will be, so I don't see the point of sending her off to be by herself (especially characterizing that as a punishment or consequence or however we want to call it). She's by herself too much already, I'm afraid.

Also, I think it kind of works in the reverse. Her "bad" behavior is usually in response to a request or instruction from me. I don't want to give her an "out" of whatever it is that we need to be doing at the moment. As in real life - we just, sometimes, have to power through.

And that leads to the next reason: time-outs aren't "natural consequences." I know some people think that yelling at a friend will end up making that friend go away and so the separation of time-out mimics that consequence - I don't think my dd could make that connection, and I don't think that's really how it works in real life. What happens, I think, is that things escalate because people don't know how to harness their emotions or control their impulses or whatever. That's what I want to help my daughter learn to do, so, staying inside of the situation gives me a better teaching opportunity. Sure, it can be hard on my ears/emotions/headache/whatever, but I do think that it's a much more productive way of parenting.

All that said, I do ask my daughter sometimes if she needs some rest when she's behaving in a way that's not appropriate (and I reluctantly use that word, because I think "bad" behavior is appropriate as children learn to navigate the world - I don't think we should encourage it, of course, but I do think it's developmentally appropriate). Sometimes she does need a few minutes alone, talking to her animals (her toys).

Uphill Battle

Last night wasn't so great. I think she was too tired and over stimulated - we'd been at the funeral home for a visitation for K's uncle and VeeGee was in rare form (head-butting form, to be specific ). The meal when we got home consisted of more persuasion than we'd been having to do, but we pushed on through. It actually got better toward the end, but she was not very happy.

This morning started out rough too, but she rallied and finished her six bites without protest.

It feels like two steps forward three back and so on, but I am still convinced that we're doing the right thing. When I told her OT what we were doing, she was visibly relieved (I think they think she's kind of spoiled at her therapy clinic and this is the replacement OT for the one I fired for putting VeeGee timeout during a session ). She also likes the idea of not letting her wipe her face off with a napkin during the session. I'm back and forth on that one. I know I'd be stressed with apple dripping off my chin!

The OT also suggested ramping up in other sensory areas so that this isn't such a blip on the screen during the day (does that make sense?). We're brushing more, join-compressing more, etc. etc. It feels as if VeeGee is really in a growing spurt, and I hope that all of this will help her cope.

I'm letting her wipe some. But I am waiting until she asks for it - so that it might increase her body-awareness (which is a HUGE issue for her). It's rather pitiful because she wants to wipe with the back of her hand, but then freaks because there's stuff on her hand. I feel for her - I'm pretty freaked by this stuff too.

But that's the thing: it's about letting her integrate these sensory experiences, about helping her process them in a way that will allow her to more productively navigate her world. There are things that, because of my own sensory issues, I simply cannot do, that are WAY TOO STRESSFUL for me because of my inability to handle certain sensations. I really don't want that for her and I hope that I'm able to help her overcome it, to the extent that she can.

Catch Phrase

VeeGee has been saying "oh mo mo may" forever. I never knew what it meant until the other day when I was watching Diego with her. Turns out she was saying "Ayúdame" - which means "Help Me."

Great! I've been ignoring her pleas for help all this time!

Onward

I wanted to mention (at the risk of sounding defensive), that this isn't sudden. We've been working toward this for a long long time now. Also, she used to eat a tiny bit. We discontinued that once she came to us, under doctors' advice, because of the severity of both her aspiration and GERD, which caused her to throw up every single time.

We just believe, along with her therapists, ENT, GI, and Ped, that she is ready cognitively as well as anatomically, to ramp it up a bit. I most definitely will not force anything - but in this short time she has gone from shaking an crying to just opening her mouth and swallowing. It's pretty amazing, and I have to keep reminding myself that it has been appropriate to NOT do this before now. I actually am feeling more guilty about not pushing her previously than I am about pushing her now.

She has always mimicked eating, tried to feed us, wanted to sit at the table. We just haven't made any issue of her food avoidance. It's not that I think I was wrong to have been "easy" on her, I can't help but wonder if, as soon as we got the go ahead (which was months ago), we'd be so much further along.

So, it's kind of funny (though I totally understand where y'all are coming from!!!!!) that this has kind of come off as if I'm pushing too hard - because my greatest concern was that I hadn't pushed hard enough.

Five Bites

I'm getting excited. We're up to five bites with NO GAGGING - just a little persuasion. And by persuasion I mean - "Open your mouth, please." That's it, seriously!!!!!!!!!!!!!!! K and I have been stopping people on the street to tell them!!!!!!!!!!! We've tried bananas and now pears. Seems like the pears were a bit better. Next I'm going to try peas (blech, but it's not sweet, so I figured we'd see if that is better/worse).

Feeding The No!

It just feels like I've hit a wall and the "force" (hyperbolically) is what I feel is next. The thing is, VeeGee has kind of hit this wall before in her other therapeutic areas (speech, other OT issues, and PT). At a certain point, we had to start limiting her choices and eliminating the option for refusal - not because she couldn't do something, but because she figured out that we'd let it slide if she chose the NO option. Believe me, I'm a sucker for this kiddo, particularly because of her past beyond her medical issues, and I don't force anything - have actually fired therapists who did try that.

Regarding the shudder - that is a response that she has to a lot of sensory stimuli. If she gets something sticky on her hand, she'll shudder. It's kind of a "Oh God, get this off of me!!!" kind of response. I wasn't at all surprised to see it with the food. We are working on desensitization through brushing and input of different textures.

So, here's the good news! After only four of these "meals" - three bites each - she opened her mouth all the way without any extended point-counterpoint. And swallowed!!!! Yep, I said it, swallowed (that is something I cannot force, no matter what!!!!) So, two meals running @ 4 bites each, she's done that. And then off to Dora . . . .

I think this issue, for me, is about listening and watching VeeGee to determine for her, when she can't for herself, when it's time to move to the next step. I have to do this in every area of her life. I'm pretty excited about this decision because it is such a huge thing for her. She hates hates hates hates the tube - wails and cries when it's time for it. I don't think that a bit of coercion in the direction away from it can be a bad thing.

It's tough knowing the best thing, isn't it? And, who knows, this might not last. I just felt like I'd be doing her a disservice to not try. It just feels like I've hit a wall and the "force" (hyperbolically) is what I feel is next. The thing is, she has kind of hit this wall before in her other therapeutic areas (speech, other OT issues, and PT). At a certain point, we had to start limiting her choices and eliminating the option for refusal - not because she couldn't do something, but because she figured out that we'd let it slide if she chose the NO option. Believe me, I'm a sucker for this kiddo, particularly because of her past beyond her medical issues, and I don't force anything - have actually fired therapists who did try that.

Regarding the shudder - that is a response that she has to a lot of sensory stimuli. If she gets something sticky on her hand, she'll shudder. It's kind of a "Oh God, get this off of me!!!" kind of response. I wasn't at all surprised to see it with the food. We are working on desensitization through brushing and input of different textures.

Grace has a pretty bad cold this morning, so we're going to go easy with this - but still press on. I think consistency is going to be key (it always is, right?!).

Eliminating the NO option in feeding

VeeGee's feeding therapy is just going NOWHERE, not one inch closer to anything actually going in her mouth. So, I decided a couple of days ago, "no more fun and games." What I mean is that the feeding therapy that we've done is very play based (which, of course, suits my parenting inclinations quite nicely), but it's not working. At. All.

For the past three days I've been "forcing" her to eat three bites of pureed food (apple/banana). It goes like this: "Look, you've got some food to eat! I'd like for you to eat three bites, and then you can go watch Dora. Do you want to put it in your mouth, or do you want mommy to help you?" "NO!!!" (covers mouth with hands, turns away, pushes bowl away). I ask a few times, then say, "Okay, mommy will help you." Usually I've been able to get her to kind of open her mouth for me to put it in, and when I say kind of, I mean, I actually really have to sneak it in. She's swallowed about three or four times, the rest, she's just spit it out.

This morning, though, she, on the third bite, actually opened her mouth on her own. Her eyes were squinting and she was shuddering, but it was open. And she swallowed. I was so excited.

So here's the worry part: I do not want to create an issue where she is afraid of food, or that she feels forced or whatever. But the fact of the matter is that she is going to have to learn this at some point, right? I mean, I can't just let her keep ignoring all of the "gentle" "therapeutic" ways of cajoling her. I actually really think she's too ornery for that.

Blank Screen Blues

Yep, got em.


It just drives me crazy.



So, I'm not teaching this semester and it's kind of weird. I'm glad in one sense - especially since it looks like the fascists have taken over the FYComp curriculum! - but I really am going to miss it. I just didn't get my shit together in time to commit to teaching and by the time I decided I did, in fact, want to, it was too late. Not to mention the fact that I royally pissed off the very nice woman who coordinates the comp teachers. I feel bad about it.

But, on the other hand, I'm looking forward to a semester that's pretty open in terms of actual commitment. I mean, THE Commitment (aka thesis) is still there, looming over me and my "Blank Screen Blues" like a drooling, snotting, gargoyle (Oh yes, the thesis is a lovely thing!); but maybe I can tame him (oh yes, it's a HIM).

Not only that, but I'll get to spend lots more time with VeeGee. That's a good thing, of course, but you'd think we could just hang out and watch Sesame Street together and learn our ABCs. In fact, I spend most of the time that I spend with VeeGee in the car headed to this therapy or that therapy, swinging and swatting at her knees so that she won't fall asleep in the car, but will wait for a "real" nap because if she falls asleep in the car (as every desperate mother knows), the "real" nap never happens. That sucks.

What's for dinner

Night before last, hubby mentioned, uncannily just as I was thinking the same thing, that I ought to keep a dinner diary. I have been, to quote him, "Hitting it out of the park," lately with my culinary creations, most of which are conceived about 45 minutes before it's time to eat. Take that Iron Chef!

For a long time, a long time ago, I thought I'd always be a professional chef. Now, I just do dinner theater, watching the demi-god known as Bourdain roam the planet eating pork like Bubba Gump ate shrimp. I love that man. No really, I love him. Like him, though, I think I'm just too old now to belly up to the old Vulcan to sling carmelized shi-shi.

So, now that I decided to write about dinner, well, it's time to go cook dinner. Tofu satay tonight.

Adoption/Birthday Celebratio

So, we did it this past Saturday, and it was incredibly wonderful. We sent out an invitation that said that we were celebrating both her birthday AND adoption. We sent it to both our family, including VeeGee's great grandparents, and friends because dh decided he didn't want to do any sort of different invite for his family. Before we sent the invites out, we let his grandparents know what the party was going to be about, that it was going to be a celebration of both. I think they are really beginning to be peaceful about the situation.

On her birthday, she got a card from her birthmother. I was SO relieved. It was actually addressed to VeeGee with our last name and was so so sweet. I am beyond thrilled about this, and am really hoping that we can keep up correspondence with her.

(Off Topic: I have been showing VeeGee pictures of her birthmother a lot lately as we've been redecorating her room with lots of family photos. She's had the strangest negative reaction, refusing to look at the photos and screaming "No!" while swatting it away. I'm concerned about this, an want to find ways to positively incorporate her birthmom's image into her life - advice would be welcome.)

Anyway, there were over a hundred people here!!!!!! Insane!!!! As a former chef, I NEVER run out of food at parties, but I almost did. Holy cow.

So, to the best part: I wanted to do something ceremonial, but not something toooo cheesy (just kinda cheesy). What I did, was get a spool of red silk rope and passed it around to the entire group (everyone was connected). I spoke about the "red thread" poem and expanded the image to include a sort of metaphorical umbilical cord. As we were all holding the same line of thread, we thanked all of our family and friends for holding us up through this journey and invited them to continue to be a part of the adopting of VeeGee into our lives and our community, symbolizing our connectedness to each other. We then passed around scissors and invited everyone to cut off a length of thread to make a bracelet, anklet, necklace or bookmark to keep as a reminder of our community. It was pretty neat, and I really think it meant a lot to a lot of the people in attendance. Without being too in your face.

New Birth Certificate

I can't really describe the sick feeling that I had when I opened up VeeGee's new birth certificate. Her birth father had never been there, but with this new one, her birth mother was, literally, erased. It felt so strange. On one hand, I was so relieved that the whole process really was over and that VeeGee really was, officially, my daughter. And at the same time, the bigger part of me, in fact, just felt so sad.

We could very very easily lie to VeeGee (by omission) and never tell her about how she came to us. She looks just like K (since she's his niece by birth) and there would truly never be much of a reason for her to suspect that she was adopted.

And that's a problem. VeeGee deserves to have her story, her truth.

And that birth certificate is a false document. It says that I drove across my state to give birth to her - in a place I've never lived. So what might that mean for so many well-meaning women who adopt and just want to step in and BE their kid's mom, for whom that birth certificate is sort of prize? It might mean that there needs to be an outside mechanism, a legal safeguard of adopted children's stories, that will help us emotional moms do the right thing. That's why, at least one reason why, reform is so necessary.

Sweetness

I had to share a sweet little moment from our day yesterday.

VeeGee is extremely averse to having her teeth brushed. We only do it every three days or so because it's such an awful ordeal. So yesterday evening was the time to do it. I had her in position and "did the deed" with the usual wailing and kicking, red-faced fury, etc., etc. After it was over, VeeGee crawled up on my chest and laid there while I rubbed her back. I sat there thinking how incredibly resilient kids, and especially these kids who go through SO much shit on a daily basis just to live, are. I felt then, as I often do, overwhelmed by her generosity of spirit and her tenaciousness.

So a bit later we were out watering our flowers on the patio when I got my foot caught under a planter and hurt it (can't really describe the way it got hurt, just that it hurt like a something-or-other). I was saying, "Oh my foot hurts, ow ow ow, etc." and VeeGee came over and got down on her hands and knees and kissed my foot - two or three times. I immediately began to weep. It was such and incredibly tender and sweet act for her - so natural and yet so extraordinary.

It may be a small thing, a silly thing, but WOW, it really sent me .

Chosen . . . Meant To Be?

I read a very interesting beginning of a discussion about these two phrases in references to adoption. The word "chosen" does seem all wrong to me - for SO many reasons, but mostly, in the end, because of what it might do to a little one's self-esteem.

As to "meant to be," that's more complicated. I'm not sure who said it in the other thread, but it's like it was meant to be in a certain sense, and yet, surely the pain of the event that landed us here at adoption cannot have been meant to be, either for VeeGee or for her birth mom. But, on the other hand, I feel so deeply that there was this eerie connection between us the very first time I met her (a year before custody of her was even a faint question or possibility). I somehow knew that we'd end up being her parents. I even told K that. (I know it's corny, but that's why I'm drawn to the red thread myth.)

So, how might I tell her this story in such a way that doesn't indicate that I think the things that happened to her had to happen to her? I know it's time for us to begin thinking about how we tell her her story, and I'm so concerned about doing it the right way, a way that includes all of her history, but doesn't wound her further.

The more I think about it the more I realize how very intimate this conversation will be, must be, and, as such, it will evolve out of the intimacy of our relationship as the relationship evolves. It really can't be scripted, especially not right now. I guess my asking this of myself at this stage is like asking myself why I was getting married on the day I did. I needed to have an answer for that day, but I didn't need for that answer to be the be-all-end-all answer for eternity (thank God!!!). Really, I don't think I had a clue about why I was doing it . . . it was actually the "I looked in your eyes . . . " That's not to say that that sentiment has gone away. In fact, it has only increased and become clearer.

That said, I do need to begin to decide on some of the terms of the story, bmom's name, for instance, because it does come up. Also, we were such starkly, vehemently, childless for so long that I am still very frequently explaining the situation (though with fewer and fewer details as I realize how much language she's acquiring lately) to people who haven't seen us in "the scene" in a while. .........

And then there was more rain.

It has rained far too much this spring. I've got plants all over my yard in pots because the ground's been too wet to plant them. It's a pity. Something like this, well, nothing like this, but something to cause planting procrastination, namely the unexpected acquisition of a two year old redheaded child, happened last year, and so there are several lovely ferns that are pleading with me to give their roots some long awaited room to wiggle. Hopefully Saturday will be sunny enough to dry the ground a bit.

As is typical for me, I would rather do just about anything than the work that I'm supposed to be doing. I have several projects that I just cannot seem to bring to conclusion. Fellow procrastinators, what is it that causes this? I mean, it's not, actually, that I wait to the last minute. No, I don't wait to begin things at all. I just don't finish. I keep on working, or, at least, I keep on thinking, on the project: how can I make it better? what else do I need to include? have I covered all the bases? what the hell was the original assignment?

It's become so ridiculous that I've carried several Incompletes forward with me throughout graduate school. Please tell me someone else has done this and survived to actually get a job.

Oh, and that's the other thing. I am at that point in my career where it's time to start sending out the CV, figuring out what's next. And what do I find myself doing yesterday? Yep, looking in to PhD programs in ANOTHER discipline. Ugh - what's wrong with me?

So, rainy Thursday, I yield myself to the project at hand. I sign off with hope.

Long Lost Blogger

I received an e-mail yesterday from a grad school friend who's pretty awesome. She said that she'd come across my old blog and wondered if I was still writing. Bah, writing? I'm just trying to finish that dratt thesis book thing. But, I thought, I do force my students to blog, telling them that the practice of writing every day is so good for them.

Shall I practice what I preach?

Well, I have to admit that my blogging hiatus has been caused in no small amount by the fear of "wasting" all my good writing, or my writing energy, or brilliant ideas on a blog - instead of on something for which I might get paid (or at least which will contribute to my thesis). Has anyone else entertained that fear?

But, I think, since the productivity is just about nil at this point, may as well waste away, huh? Maybe it'll get the juices flowing. God knows I need some juice.

So, this felt good, and Barney's coming on, so now I'll have to go do something else. VeeGee needs my attention (oh, and there's another reason for the hiatus).

Here's hoping I can keep this up. Wouldn't that be great? Yep, it would.

What Day Is It Again?

Well, it's been a pretty good day. VeeGee is extremely cabin feverish, but not so regular feverish, so that's good (and not so good). She's so ready to get out of here, and I think we'll be doing just that sometime tomorrow! Yeeehaa!! It's pretty late, and she's still not asleep so I'm going to play possum for a bit in hopes that she'll go to sleep and let me work for a moment or two (not able to get much of anything done here in the hospital with so many interruptions and, oh, the crying baby and all ........). Much love to everyone - I hope to see you all soon. Wendy & VeeGee

Happy Saturday

Happy Saturday! I hear there were some lovely storms yesterday in Memphis, but that today is beautiful. I'm glad. It's nice here (we have a lovely view of building tops!).

VeeGee really well last night, but continued to run a fever through the night, even with the Tylenol. I think partly because the palate is closed and partly because she's sleeping with her mouth open, but she is snoring like crazy!!! It makes me think about my great grandmother and grandmother - the champion snorers of all time! I think VeeGee have given them a run for their money if she'd had the chance. Her doctor was in this morning and said that her palate was looking good, but that she was a little concerned about the fever (not too much). She had thought we might get to go home this weekend, but it looks like we'll be here at least another day or so, which was really the original estimate. We were just hopeful because we don't have to wait for her to start eating (we'd be here a good long while if we had to do that, I'm afraid!) because of her g-tube. Oh well. We had some good play time this morning and a nice bubble bath. I got some grainy pictures from my laptop cam that I'm posting here in a minute. Say prayers for VeeGee that the fever will break and the pain will begin to lessen. She's so brave and funny, you'd all be so proud of her. Thanks for loving us. Wendy & VeeGee

Night in ICU

Today's been a roller coaster! Nights in ICU are not like those in a regular room. There's lots of light and beeping - full windows on all sides. VeeGee is connected to lots of wires, and for whatever reason the leads monitoring her heart are adult-sized, so they're pretty uncomfortable. She's also on a pulse-ox monitor, an IV tube and her feeding tube - in all, seven tubes/wires, bless her heart! As usual she's a firecracker and a champ! What an awesome personality - I'm so proud of her. We had fun playing and talking with Daddy on the phone this morning. Soon enough, she'll be able to pronounce the "d" sound and will stop saying "ah-ee" for "daddy." I think we'll kind of miss that. The doctor came in around eleven and said that she was looking great. Again, because of her feeding tube (!!!!), she may be able to come home much sooner than they had originally told us - maybe even this weekend. One concern, though. Once they backed off of the Tylenol from every 4 hours to every 6, she started running a fever. There are a couple of possible reasons for this. First, it could be because she was particularly angry at the time that we took her temp., and second, it could be that the Tylenol had just been keeping the fever at bay. I'm a bit inclined, unfortunately, to think it's the latter in this case since VeeGee generally runs a low temp (around 96, usually), and so any fever is actually more of a fever than it would be for other kiddos. Also, she just had a fevered look in her eyes. After the Tylenol, though, she's back to her "fair-to-midland" self. So, we'll just cross our fingers. BTW - we are about to be (finally) transferred to a regular room. YAY!!!!!

ICkeyU

First night in ICU went relatively smoothly. VeeGee is truly a redhead, and that fact is FREQUENTLY noted by all who try to touch her! She's not a big fan of, well, pretty much any of the things attached to her. The one that seems to freak her out the most is kind of interesting

to me. The pulse-ox monitor is attached to her finger with a little band-aid looking thing and it has a little red light that puts me in mind of E.T. Well, she really, really hates it. Always has. I feel for her, I want to convince her how really cool it actually looks. We've gotten a good look at her mouth now. It's pretty interesting looking. I'm glad that the doctor warned me. It looks like there's a second tongue in there! The palate that he create has not completely adhered yet - that'll take a few days - so it really looks like a tongue up there. There's a fair amount of bleeding and her face/eyes/lips/tongue are all pretty swollen. Still, she's as pretty as a picture. We're hoping to be in a regular room by this evening. As always, thanks for your sweet notes, and your prayers.

She's Out!

Well, well, prayers, good wishes, and ordering food (true to restaurant worker tradition) seemed to work wonders y'all! The surgery only took an hour and a half!!! And it was a HUGE success!!!!

!!!!!!!!!!!! K had gone to get something to eat at what we thought was the (safe) halfway point, and they called our names - I couldn't believe it. The doctor was so, so pleased. There was enough tissue there to create an entirely new palate (soft and hard) and they did not have to do a pharyngeal flap. Yahoooooooo. He said it will look like she has two tongues for a few days (ick!), but that will heal fairly quickly. She'll be in recovery for about another hour before we can go see her, and then she'll spend the night in ICU. The doctor said that she'd then stay in a regular room for five to seven days (I'm hoping for less, though, because of her feeding tube which will help to prevent dehydration - cross your fingers!). I'll sign off for now.

There She Goes!

VeeGee finally just went in to surgery at 1:00. Dr. Kelly said that it should take about three and half hours or so. They won't know exactly what they're going to do until they get in there and see the cleft up close (without the wiggles). There is a strong possibility

that they will have to do a pharyngeal flap . The good thing about that possibility is that that procedure will reduce the nasality of her voice (nasality is a common result of cleft palate). She had a pretty tough morning, as she's getting her two-year molars and has a heinous diaper rash and didn't get to sleep until midnight last night since our CONFIRMED reservations at our hotel were canceled. We were sent to a totally gross hotel with no space for her. Poor thing. Anyhow, I'll update when she's out of surgery. She'll be going to ICU after recovery. Thanks for the prayers and good wishes!

Big Day

Today was an amazing day for our family. Early this morning, we went to court to finalize the adoption of our daughter, VeeGee. We are so proud to have her in our lives and look forward to all that is to come. We do feel sorrow at the loss that this means to VeeGee's birth mother, but our prayer is that she will heal and be able a rewarding position in VeeGee's life. We also buried my uncle today. We literally drove from court to the funeral and walked straight in to the family procession.

This, too, was a bittersweet experience. My Uncle B had suffered for a while with an unknown illness, had been treated dismissively by doctors because of his (admitted) obesity. He was in intensive care for fifteen days - an incredibly exhausting and emotional experience for my family, who are all very close. In the end, as he was unconscious and on a ventilator, the doctors in ICU were able to drain off over 150 pounds of fluid from his body - fluid that was not fat. He'd been telling people for a long time that it wasn't just fat, and we were so hopeful that he would wake up and be able to give those doctors a tellin' to. But that was not to be.

We're off tomorrow to Nashville for another surgery for VeeGee. This surgery is to repair the cleft palate which is caused by her disorder, Pierre Robin Syndrome, and is the sixth surgery for her since September. We'll be in ICU for a couple of days and then in a regular room for 4 to 7 days. In our case, for once, VeeGee's feeding tube is a plus. Because we won't be waiting for her to be able to eat post-surgery, we may not have to stay as long as we might otherwise. Silver Lining! Thanks so much to everyone who has supported us in this very interesting endeavor!

TODAY IS THE DAY!!!!!!!!!!!!!!!!!!!!!!!

Well, it's been three hundred and seventy-five days since VeeGee came home with us. I think about how incredibly terrified we were: this fragile tiny little thing. I remember how frightened we were to change her trach the first time, how horrible I felt the first time her mic-key button was pulled out. And the vomit! Dear God, the vomit. I can still feel that warm stickiness as she would bury her head in my neck, seeking comfort from the heinous retching.

And I look back at my posts here wrestling with the emotional roller coaster of her not calling me mommy (seems funny now), about her name change, about how to deal with being alone in the hospital in the middle of the night unable to read the erratic monitors.

So, today is the day. In two short hours, she becomes ours not just in our hearts, but according to the law. It's a bittersweet day. We finalize at 9 and bury my uncle at 11. The circle of life indeed. I am also keenly aware today of the loss that today will represent for VeeGee's birth mom. I really feel for her. No matter how awful I think she's been, this still is a hard, hard consequence for her actions - one that is incomprehensible to me, really. I truly hope that she will heal from this and become a happy content adult with whom VeeGee can have a wonderful relationship.

I am overwhelmed with emotion this morning. The rain has moved on and the birds are chirping in the wet branches of the trees that are hanging over my window. VeeGee spent the night in our room last night because her uncle is in town for the funeral and in her room. I am so happy to have been able to watch her sleep - by the glow of the feeding pump.

Well, I'm not making much sense now. Celebrate with me today!!!!!!!!!!!!!!

Cleft Palate Fissures & Vandy Visit

---

Well, I'm excited and nervous and totally fried. VeeGee and I have been at Vandy for the past two days. We have seen six doctors (craniofacial surgeon, allergist, GI, pulmonologist, and the GI surgeon), had allergy bloodwork (bless her heart), X-Rays, and, ahem, an enema. I have NEVER seen ANYONE suffer like my baby girl suffered after the enema (saline). She screamed for forty five minutes straight, forehead flat against the wall, tiny fingers clenched, teeth clenched, And then she crawled into my lap and pooped 9 days worth of poop all over herself, and me. Pretty crazy. And THEN, we had to go have four vials of blood drawn. Naked. Well , her, not me.

So, the craniofacial surgeon, god bless him, scheduled cleft palate repair for the 30th OF THIS MONTH!!!!!!!!!!!!!!!!!!! "Our Other Doc," Dr. W*#@*&^, was going to wait until she was AT LEAST four. Meanwhile, she continues to be unable to eat, to speak (and be understood by anyone but me), to have repeated sinus infections ear infections, blah, blah, blah.

Anyway, Other Doc fired, Vandy dude rocks.

There are concerns, though, about the repair. It will be the second attempt. The first attempt was when she was 6 months or so (before she came to live with us) and there were serious fissures (like so serious that every doctor who has looked at it as recoiled in shock, that is, every doc except Dr. W*#@*&^, who, apparently has NEVER ACTUALLY LOOKED). So the primary concern is that there might not be enough tissue to make the repair without further fissure(s). The other options, as I understand them, are to pull tissue from the cheek and/or a pharyngeal flap. This doc does not think a tongue flap is a choice for VeeGee b/c she's too young to tolerate it. Same reason not to do an obturator.

Update

I's been a while since the last post, so I thought I'd give y'all some updates. VeeGee has just blossomed since the trach removal in February. Her language has exploded and she's saying full sentences (mostly only and I can understand her, but that's okay). She's LOVING playing with the dogs - this seems to be a relatively new passion for her. She's also having a GREAT time with her good friends L and J.

She's finally moved into her own room. The separation was really hard for me, but she seems to be all "here's your hat, what's your hurry?" about it. It's nice having a grownup room again after a year, but I'm still missing waking up to watch her breathe in the middle of the night.

Next week we're headed back to Nashville to consult with a new craniofacial specialist, who will be taking over her care relative to her cleft palate fissures. The repairs are going to take time, but we feel like the doctors at Vanderbilt are both more proactive about her treatment and much more team-oriented than what we've been experiencing here in Memphis. We're also going to be seeing a pulmonologist, a GI doctor, and an allergist. She's been dealing with a rattly chest for quite a while, despite twice a day inhaled steroid treatment; as well as some developmental issues with her digestion that we are thinking might be relative to food allergies. We'll see.

She is still 100% tube fed, though, with her feeding therapy group, she's 'entertaining' the idea of touching some foods with her fingers. Occasionally, something makes it all the way to her mouth, but we've yet to see any intentional swallowing action. She will drink water though, lots of it! I think that's about all for now. We hope you all are well and that this update finds you as happy about the sunshine and spring weather that we are!

We Have a Finalization Date!!!

Saturday was day 30 for VeeGee's bmom to reply to the TPR filing. Not a peep out of her. (Actually, she did send dd an Easter card, which she signed 'mommy' with her name in parentheses.) Anyway, she did not contest the petition.

Our atty is going to file the notification of default on Friday and then there will be a default hearing next Friday, at which he will request a finalization date of APRIL 28TH!!!!!!!!!!!!!! Three weeks! I cannot believe that we're almost there. It's just crazy.

So, now I'm planning some sort of consecration ceremony.

I'm just beside myself and wish the days would go fast!

Fourteen Days And Counting . . .

K clarified some stuff for me yesterday (we've not had much talking time lately). Apparently when the default (on Day 30) happens, our lawyer will then file for a 'failure to respond' or something like that. THEN, bmom'll have either one or two weeks to respond to THAT (I guess 30 days isn't quite enough time ), but we'll already have a court date, hopefully around May 1st. THAT date will be the final date. But I've thought I knew the final date before. This waiting is like waiting for a burglar to break in in the middle of the night. I think it might happen, I've installed the alarm system and armed it, I can't see two feet in front of me . . . .

GD+SN=?????????

I think a lot about how special needs parenting forces us to give up so many of my "crunchy" ideals. And I'm wondering, now, if gentle discipline is one of those things we have to give up.

VeeGee has GERD and has thrown up pretty much constantly since she was born until she had a nissen fundo in January. Thankfully that ended the vomiting. And, for the first time, we can see inside of her mouth without her completely clenching her teeth. I know it might seem ridiculous, but we've just never been able to fight her hard enough to be able to see inside her mouth without her throwing up. But now we can.

Anyhow, we've discovered that her teeth are almost black - likely from the acid and the "neglect" and the massive amounts of antibiotics. SO, we've decided to start brushing them. And you'd think we were torturing her.

I'm used to torturing her, to her screaming in pain or agony or fury. I HAVE to do horrible things like give her breathing treatments, change her trach (until last month), clean/rotate her mickey button, oh, and change her diaper. I have to hold her down, probably hurting her, when nurses change her IVs, take her blood pressure, her temperature, her ears.

And now I'm wondering just what she understands. How much am I supposed to hold her accountable (I don't even know if that's the right word) for her occasional hitting, throwing and other 'misbehaviors' - mostly mild, really? Her therapists complain about compliance, and I just don't know how much more I can push her.

How do you establish boundaries, 'rules' or whatever when you're not completely sure that your little one understands? How do you cope with people who think you spoil your child because they aren't always 'following instructions' or whatever?

Today Is Day One.

After successfully avoiding the process server for days and days, VeeGee's birth mom was FINALLY served with adoption papers. So that makes today the first day of thirty that will constitute 'default' in our case for termination. We tried it the easy way, by giving bm (what's a better term???? not that I care all that much.) the chance to join the petition, but she thinks we're liars when we say that she will always be a part of VeeGee's life. She thinks we'll, at some point, just decide that she can't ever see her again.

Funny.

She hasn't called or written or sent a gift or ANYTHING in almost a year. You'd think she was pretty much over 'seeing her.'

I'm trying so hard to not be angry with her. Anger can't be good - for me, or for VeeGee, or, especially right now, for K. He's really suffering over this because he just feels like he's lost all of his family now in this decision. I don't think he'd change anything, but it's just hurting him. His grandparents, who are functionally his parents, have decided not to 'choose sides' between their grandchildren (K and his sister) - which means that, effectively, they're not supporting us. His grandmother, further, keeps insisting that 'this isn't A's fault, it's just that she was so young.' VERY FRUSTRATING.

But, still, today is day one.

Kinship Adoption Is Really Hard

I am feeling so sad about the way things are going for our family right now. My in-laws are really showing their true colors as a result of the approaching finalization of the adoption (of their grand-daughter - my husband's niece). I've always suspected that, despite protestations to the contrary, they have never really regarded me as part of 'their family.' Turns out that's true. Although K and I have been married for over eleven years, they still hold a longstanding (and asinine) grudge against my father (too stupid to go into). I, apparently, still bear the sins of my father. I have a huge and loving family (definitely NOT perfect, but very accepting) and his family have NEVER agreed to join us for holidays or any time that they perceive to be 'my family' time. It's always hurt me that they would not budge on this, but it's really coming to a head now.

We have decided to change our daughter's name, and we are giving her my grandmother's name as her first name and Grace as her middle name, reflecting the miracle of her entry into our family. The name she had did not have any family history (for her or for us). When we told the in-laws, their (HER) first response was "V?" (sneer) "where does that come from?" When K her that it was my grandmother's name and that she means very much to me, all we got was a sniff. Then, later, when she was saying goodbye to dd, she kept saying "Bye A" and when I gently and quietly said "VeeGee" she said, "Well, I'm just not ready for that yet." I didn't make much of it because she had just found out. I understand that it's going to take time getting used to. But, now, every time she sees VeeGee, she continues to call her A, insisting that she's just not used to it. She doesn't correct herself or anything.

Today, K was speaking to them and they were still protesting the change (it's been two months). They're angry that we're not offering an "olive branch" on the name issue. What the hell is that supposed to mean? Like, uprooting out entire existence, going into debt, wrenching our hearts out over this precious girl who was abandoned and most certainly going to be adopted by STRANGERS isn't "olive branch" enough?????!!!!!!! And then, piece de resistance, they asked K why we'd chosen a name that had nothing to do with VeeGee's family. Yep, I AM, APPARENTLY, NOT VeeGee'S FAMILY. Rich, huh? I'm so angry I could spit. And the worst thing is that this is really breaking K's heart. I don't want to keep ranting to him about this because I don't want to hurt him, and I don't ever want to sever VeeGee's ties with her grandparents, but I'M DONE being "their granddaughter" as they've called me for so long. (They're actually dh's grandparents, though they function more as his parent parents.)

NOTE TO FLAMERS/BIRTH MOTHERS: I've already been set on fire about the name change thing. That's a done deal as far as K and I are concerned. What I'm hurting over, what he's hurting over, is the fact that, apparently, membership in this larger family is conditional. And we're blindsided by that.

No Choking!

We got home late last night - one month to hour from our last surgical trip. A perfect Valentine's

gift to everyone. I just gave her a bath and there was NO CHOKING on the water! First time EVER. It's incredible. So, so wonderful.

Coming Home!

We're coming home today! She looks so beautiful - only a band-aid where the trach was. And super, super happy this morning. Thanks, as always, for your support, prayers, and good vibes! Hope to see you soon.

Trach's Out!!!!!!!!!!!
Dr. G. removed it at 8:30 this morning. And she's doing really great.

It's Actually Happening!

I'm starting to get excited now! VeeGee for almost three hours and her sats never dropped below 96%!!!!!! This is really, really great news. She's just singing and dancing - what a super champ! If only we had a drumset in the hospital room, everything would be perfect.

Here We Go

Well, we eventually got a room on a regular floor late last night (sigh of relief!) and we had a "regular" night's sleep in preparation for today. They blocked off her trach at 11:30 (3 hours ago) and her sat levels have been in the upper 90s. She's beginning to fall asleep right now, so now the real test begins, as, apparently it's during sleep that it's the most critical and most likely to not do okay. Just in last few minutes the sats have gone down a bit, but not too alarming.

Decannulation Update

11:26AM
VeeGee's pretty rattly this morning, but they're still going through with capping her off. She's been capped for about 10 minutes and is still at 98/99 saturation. They said that if there was a problem it wouldn't necessarily manifest right at first. I'm feeling like I've got to be super vigilant (more vigilant? is that possible??) to watch for signs of stress. But, she's babbling and watching Elmo, so, so far so good.

9:28PM

She dropped to 95 for a while after her breathing treatment (odd?) but is now sleeping and at 97 for a bit. I think this is actually going to happen! I can't really believe it. It seemed like we'd have the trach forever, and now it looks like my sweet little champ is going to go home trach free on Thursday. It feels too good to be true.

I know we've got a long night ahead of us - she just dropped again - but I'm really feeling positive. And it feels GREAT!!!!

News!

Lots of news from our family!

We are so happy to let y'all know that A is becoming VeeGee. The adoption process is moving along, and we're hoping to have it finalized within the next couple of months. Our hope is that VeeGee's birth mother will continue to be a part of VeeGee's life, and that, though this will be a difficult transition, peace will, nevertheless, abound.

And in other news, VeeGee began her several day process of decannulation today at Vanderbilt, which means, they're starting to wean her off of her tracheostomy tube. This first day (today) was a bronchoscopy, during which her otolaryngologist looked down her airway to assess for viability. Tomorrow he will insert a modified tracheostomy tube which will force her to breathe through her mouth. They will monitor her for twenty-four hours, watching for signs of desaturation and labored breath. If she is able to breathe normally, the doctor will simply remove the trach and apply a dressing. They'll observe her one more night and then we'll come home. The hole should heal within a month, but if it doesn't, she'll have to have surgery to close it.

During the bronchoscopy, though, Dr. G didn't like the condition of her airway, saying that it was pretty narrow (made him "unhappy"), and that there had been some collapse of the airway above the tracheostomy tube, known as "suprastomal tracheomalacia." This may cause her to be unable to be decannulated without another surgery called Laryngotracheal Reconstruction. In this type of surgery, the narrow areas of the glottis or subglottis are opened up, and carefully shaped pieces of the VeeGee's rib cartilage are placed to widen the narrow areas. The recovery from this procedure is fairly lengthy.

Dr. G said that he had seen a few patients with airway's as small as VeeGee's who had done well enough to avoid further surgery, but he wasn't overly confident that she would be able to do so. There are also complicating factors, he thinks, with her lungs, which we already knew to not be in the best condition. So, there may need to be a pulmonologist pulled in to the team.

She's just woken up from the anesthesia and is very active, so I'll sign off. We're not getting a room tonight because the hospital is full, unfortunately. Pray that we can get one tomorrow morning! Thanks, as always, for your love, encouragement and support.

Name Update

Well, after quite a bit of soul-searching and lots of late night talks, K and I (together) have decided to go through with changing VeeGee's name. We're not using the name that I had *adamantly* insisted on, though. I'm so, so much happier with this new name that we mutually chose. That's what I wanted all along, for us to do this together and for it to have meaning to him as much as it does for me.

And the transition is going well. The new middle name/nickname has the same ending sound/syllable as her old first name/nickname, and when I ask her, "Are you *new name*?" she nods enthusiastically. AND she can say it so much easier than her old nickname.

So, today, we're telling the in-laws. Should be interesting. I'm thinking they're gonna hate it, but they never even said the other nickname right, instead calling her "insert terrible automobile name here" which is just awful, right?

I'm feeling very peaceful about this all. Finally.

AND tomorrow she gets her trach out!!!!!! HUGE MOMENT!

Decannulation

, we're one week away from decannulation! We cannot believe that it's happening so soon. We've been very worried because A has been struggling with some pretty intense respiratory issues. We weren't sure if she would recover in time for them to clear her for surgery. But, as of today, she's really starting to be her old self again. It's nice to see her perky. A new milestone's been achieved, too, since the nissen surgery in January: A is now 25 pounds. That's the most she's weighed in her life, and it marks a nine pound weight gain since she came to live with us. We're so proud. We'll keep you posted on the next surgery, which should be our last for a good while.

You Know You're The Parent of a Kiddo With Special Needs

when . . .

You're just so thrilled to see poop at all that you don't mind cleaning it up!

Or you've quit worrying about telling people what her trach does and started just telling them it's a necklace. . . . And you don't hesitate grabbing somebody else's kid who decides they'd like to take that necklace.

Or you answer that stranger's pitying, "Oh is she okay?" question with, "Yep, just fine, and you?"

Or you've quit worrying about the vomit streaks on your clothing "as long as it doesn't smell too bad."

More Name Stuff

Last night I think I finally was able to communicate to K why it's so important to me. It's really not an ownership issue, though I think that there is something to that relative to my sister-in-law. For me, the issue is more about the spiritual nature of adoption itself. I see this experience as a spiritual and holy one, much like the adoption of gentiles into the family of God. I believe that A will be "grafted in" to our family - creating a new, and holy, family. A family, to use the adoption petition's own language, that will be as if A had been born to us. In fact, I believe that she WAS born to us, and will be born AGAIN to us in the formal act of adoption.

It's true that I don't like the name her birth mother chose for her. But, really, that's only a tiny part of the issue. I want to be a part of the name that she will carry into her life. It's really important to me.

I think that K finally is beginning to understand where I'm coming from. He said last night that he had thought that it was mostly an aesthetic thing for me. It's not. Lot of people have the name that A has now, lots of people think it's a beautiful name. That's irrelevant to me. I'd just like for her name to reflect and commemorate the experience we're going through, that she's going through.

Name Change

So, we're filing the adoption petition tomorrow, or as soon as K can get in touch with his sister to *try to* convince her to join the petition (not gonna happen, imo). We've decided that, in the petition, we're going to include the name change.

Problem is, K and I are having a hard time coming to agreement on this issue. He would like A to have some of her birth name and I'd like to change it completely. I really would love to erase the ownership that maintaining A's "given" name allows her birth mother (my SIL). I've been telling K this for a year now.

Turns out he hasn't really been taking me seriously, like not even seriously enough to form an argument one way or the other. And I'm just finding out how "unseriously" he's been taking it TODAY.

So, he said, "Start making a list of names that you like." HUH? I've told him THE name I'd like, been telling him THE name I'd like for almost a year - though probably longer than that in the "what would you name a little girl if we ever had one?" game. And he said, "anything else?" Nope, but I'd consider any suggestions that he'd make - he's just not making any - unless you count adding HIS last name (not mine) to the end of her name. I don't want to hyphenate her name.

I just want him to be invested in this part of the adoption, I want him to be proud of and have input on this very important part of the experience.

On to the other issue (sorry this is so long): I know that there are lots of people who have said that changing her name altogether would be wrong. I just don't think so. She's being given an entirely new life and a new family. The name I want to give her is traditional within my family, and we have a very strong and, in my opinion, lovely family bond that I'd like her to feel a part of in a special way. Giving her the name of her grandmother and greatgrandmother would reaffirm the new bond that the adoption is creating.

Update

All! A is doing very well. We're figuring out the new feeding schedule, which is pretty much just 24 hours a day. Hopefully, her stomach will start to process more and more quickly soon. She seems to be in less and less pain and is not having to take any prescription-strength painkillers. That's a relief. We have, however, had to re-start most of her reflux meds. Hopefully, this will be temporary, but, still, it's better than it was before the surgery, and we're very grateful for that. The washing machine has seen a lot less action since we got home since there's not as much vomit-soaked laundry! Yahoo!!! AND, we have a date scheduled for trach removal! She and I will be traveling to Nashville again to have the trach taken out on February 11th. I am SO excited about this and really looking forward to the changes it will afford our sweet girl. I can't wait to really hear her voice.

A New Life

So, home for a couple of days and A's still recovering well. We have hit one little bump in that she's having trouble with retching when her stomach gets overfilled.

Basically, we're having to relearn how to feed her. So, wish us luck with that. I'm concerned that her stomach is still not processing as well as it should (only one bm since we've been home, and just not able to push all of the formula that is required). However, I have faith that this will get better. I'm a member of a mothers' message board for special needs kiddos and the feedback that I've gotten is that the retching might not ever get better. I'm trying to be okay with that, and, I guess, the retching is actually better than full-on vomiting. We're still waiting to hear from the otolaryngologist about scheduling decanulation (trach removal). Hopefully that will be very soon, though we don't want to push it too hard. Thanks, again, for all of your prayers, good wishes, and friendship. It is really meaningful to have so many wonderful people offering support. We truly appreciate it!

"God only gives special kids to special parents"

Please don't say this to me.

I have such problem with this way of thinking. I can't have children of my own, have had three miscarriages, and yet my sister-in-law has a little one at 16 who has "special needs" and goes on to leave her in a crib wallowing in her own vomit alone, with the door closed, for 16 months before DCS FINALLY stepped in. Now, we're playing catchup with all of the surgeries and therapies that she should have had when she was teenincey. Actually, she's still teenincey because of her mother's neglect. And I don't care that she was/is a child - blah, blah, blah.

God didn't do this to my sweet little one. God just didn't. God may have intervened through the hands of DCS, and then mine, but God did not cause my little one to suffer. Her birth mother did.

Nissen & Gagging????!!!!

I am wondering if it is normal for her to gag after the nissen a bit and if that's okay. I know that was one of the initial problems post surgery that indicated she wasn't emptying. Should I be worried that, when I just gave her 5ml of multivitamin and 2ml of her pain med, she gagged for about a minute? Only a dribble of "vomit" came out. Will she ever be able to vomit? I know I should have asked these questions of the surgeon, so please don't flame me. They just literally pushed us out the door at discharge, so I was pretty discombobulated.

Also, we are just, for the first time, beginning bolus feeds, but she seems to be tolerating me pushing the formula A LOT faster than the doctor indicated. In fact, I don't think she could sit still for 30 minutes while I bolused her. Is there a chance that I'm messing her up by going too fast

Happy Birthday Daddy!

Well, we made it home in time to celebrate daddy's birthday with him! A is convalescing at home now, pretty groggy, but super super affectionate! She's a little snuggle sweetie today. As per her regular personality, she's fighting the drowsiness and refuses to sleep, which is pretty funny looking. As we were leaving yesterday, the surgeon said that he'd just do his follow up appointment when we come back to have A's trach removed. When I asked him when that should be, he said she'd be ready within a couple of weeks! I just can't tell you how excite we are. The trach removal is just going to change A's life!!! It's amazing that it's happening so fast. We really thought it could happen at the earliest during the summer - but it looks like A's going to get to go swimming, instead, this summer! We just feel so blessed!

We're Getting There

REALLY GREAT NEWS! A tolerated the pedialyte all night!

Yesterday after I wrote the post, the doctors decided not to start her feedings of formula until this morning (which they did at 7am), and they didn't stop the epidural until 7 also. They switched her to IV oxycodone (NOT oxycotin, like I thought they said earlier - whew!!!). I can tell a bit more agitation, but I think she's handling it pretty well.

The last hurdle we have right now is to see if she will tolerate the formula. So far, so good since 7. I'm so thrilled. She's gotten really, really upset several times this morning which, before the nissen would have yielded profuse and unending amounts of vomit. Yahoo!!!!!!

They just took the epidural out a few minutes ago and the full Wrath of A was unleashed. And still no vomit! One major hurdle is left, and that's to see what the residuals are in her stomach after these feedings. This I'm a little more concerned about because when the nurse and I checked at about 9, there was more than one hour's worth of formula still in there. The doctor is okay with one hour's worth of "residual" but no more. Hopefully this will resolve within the next couple of hours.

So.....it looks like we might b getting out sooner than they'd been telling us!! Maybe even this evening. What a roller coaster!

Cross your fingers for us.

Update

Thanks for the all the messages!

We have been on pedialyte feed for four hours now, and she seems to be tolerating them. They're giving her 10ml/hr continuously, so we won't be draining her stomach to see if there is residual. We'll just have to wait to see if she fills up to the point of gagging. So, I'm watching her closely while she watches Barney and Elmo (again, and again).

They didn't stop the epidural and have actually reordered it for an additional day. That means that we'll be here until Wednesday, at least.

Tomorrow is K's birthday, so I think he'll be driving over for an overnight stay with us. Pray that he has safe travels.

Y'all take care and enjoy your Sunday. I probably won't post again until tomorrow unless something major happens.

She's a NUT!

The "surgery fellow" (I guess an assistant, or student of Dr. Neblett, A's primary doc) was in early this morning. He said that Dr. Neblett wants to wait and see if A starts moving stuff through before doing a bunch of tests and x-rays. We're going to restart the feeds some time this morning, and, hopefully, that will work.

The pain team is going to allow the epidural bag to run out and then start A oxycotin IV. Yikes. They're going to leave the epi in, though, in case something happens or if the IV pain meds don't work well enough.

Y'all should see her. She is such a NUT! After her last surgery they had to release her without taking her b/p because she was so violently opposed to it. THINGS HAVE CHANGED! She has decided that having her temp taken, her b/p taken and having her heart listened to are the most amazingly fun things. Whew! As a matter of fact, one of the care partners brought her a spare thermometer, which she has hugged to her chest like a baby ever since. She has to take my temperature every so often and, now, since a nurse also brought her a stethoscope, we've added "heart listening" to my oh-so-frequent examinations.

I had to raise the rails of the crib because she's so chipper today and is standing up a bit. Which means, of course, that she's constantly tangled in all of her wires and has pulled the leads of her chest twice already this morning. Still, it's heartening to see her cheerful.

Thanks to everyone for the sweet messages. They mean a lot.

Nothing's Moving

So, still no movement in her stomach. And they just weighed her. She's lost a pound and a half already. This is really sobering news, as this has been one of our biggest fights for her: to gain weight.

I haven't heard from her doctors yet, though they apparently spoke briefly with the nurse at five and said that they would need to meet as a team to discuss what to do next. I don't know when that meeting will be, but I'm hoping it'll be tomorrow.

No Food Yet

We have not been able to start the bolus feedings yet, as there is still fluid in her tummy (from last night, I guess). The docs now just have her on a drainage tube to see how much is coming out. This complication is going to extend our stay a bit.

Nissen News

A's surgery lasted over four hours. The otolaryngologist also scoped her airway to see if it is viable - which, wonderful news, he say it is! That means that the trach can come out as soon as we finish healing from this surgery (a nissen fundoplication). The recovery is going to be longer than we thought because they had to do it "open" instead of laproscopically, which means she has a three to four inch incision running vertically between her bellybutton and her nipples. Still, trach removal is within sight!

Since the surgery, A's had a bit of a hard time. Her stomach has been unable to empty. We've done two rounds of pedialyte infusions, which were still in her stomach after eight hours - causing her a fair amount of discomfort. We drained the stomach twice (that's fun!), and have just left her empty since midnight last night.

This morning the doctors (not the primary surgeon, though) decided that we would try bolus feeds of pedialyte to see if she can process smaller amounts. The anesthesiologist said that if she can do that, then she will try to take the epidural out tomorrow afternoon.

Our big concerns, obviously, are, first, that she's not tolerating the feeds. Next steps for that, if the bolus doesn't work, are x-rays and ultrasounds, and, ultimately, surgery. We're hopeful that it won't go that far. Second, she is showing some signs of respiratory infection - we're waiting on cultures for that. This is typical for her, as you know. And, finally, the epidural site is showing a tad of redness, which, if it increases, would mean pulling that out and going to IV pain meds - which make her groggier.

She's really a fighter and is cheerful between the sticks and pokes that are routine in the hospital. She pulled her IV out a bit ago while fending off the white-coated-meanies, so I'm anxously awaiting the arrival of the picu team to re-insert. Yuck.

Uncertainty

Uncertainty really is one of the hardest parts of parenting a special needs kiddo. K I sometimes say it's like trying to stand in an ocean with crashing waves all around you - in the dark. You never know what's going to hit next. That said, we find that, for one thing, having a sense of humor about it all is a lifesaver. Yeah, this is your life, and, yeah, sometimes it sucks. But, really, it can all be pretty funny too - if you allow yourself to relax into it.