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.