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

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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.