Wednesday, April 30, 2008

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!

Monday, April 28, 2008

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!!!!!!!!!!!!!!

Tuesday, April 15, 2008

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.

Friday, April 11, 2008


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!

Tuesday, April 8, 2008

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!