xnera: Icon of Kyp/Tohru, hugging. Full of love! (full of love)
Finally got sick of waiting, and called mom at work.

Surgery took 2.5-3 hours, and went very well. They've got her doped up on pain meds now, so Ed & Diane left the hospital for a while since Madison's sleeping anyway.

New assessment by the neurosurgeon: at least partial mobility in her feet and ankles. They also did an MRI, and "her ventricles look good", meaning the hydrocephalus isn't being a problem, so no shunt. Also, she got 9s on her APGAR tests.

This is such a big YAY! that it calls for a dancing banana. Except it looks like I only have the borg one uploaded, so you'll get that one:



Still haven't posted to Hatrack yet. Meh. I'll think of something soon, hopefully. Meanwhile, cow-orker who thought Madison was "fighting for her life" (*STABS*) also reacted stupidly to the news of "partial mobility": "So she's disabled, then? That's horrible."

Right. Am seeing red and do not know how to respond. So I sent a note to my friend Stephen Drake, who's a researcher for Not Dead Yet, asking for some advice on how to deal with closed-minded folks like her.

I think I might hit the comic book store on the way home to celebrate the good news.
xnera: Icon captioned "a woman bracing herself." (bracing)
No news yet.

*twitches*
xnera: Icon of Kyp/Tohru, hugging. Full of love! (full of love)
Madison went into surgery at 7:30 this morning. I think--my mind blurred with all the numbers. I know it was this morning, so I'm assuming she's in surgery now. It can take up to seven hours, so it might be a while yet.

Good things: Her large size. That's going to make the surgery easier. Her feistyness. :D Doctor's say that's a very good sign. Initial assessment is that she should have most use of her legs--down to her ankles, probably. That may change with surgery, so we'll just have to wait and see.

The hydrocephalus is being monitored. Right now it's fine, but if the pressure gets worse they will put a shunt in.

I've been trying to put together a public post to that will be crossposted to Hatrack, but I'm rather blank. It's been written in my head several times, but I can't seem to put it down. Perhaps I just need to wait until the surgery is over.

I feel rather vunerable and defensive at the moment. I kind of want to curl into a ball with my kitty, except I have to run journals. At least I have something to do. I passed the pictures around earlier, and got mostly positive responses. My dad has been talking to C. & S. about this all along, so they took it in stride and asked a lot of questions. Most everyone else is hearing about it for the first time, though. Dennis told me humorous stories of his one-legged uncles. :) J., though, said she was very sorry and that it's a shame that Madison has to "fight for her life" from the start.

...Okay. I expected some reactions like that. But I still got defensive. She's not fighting for her life. She's doing well and is very healthy, except for the spina bifida. Yeah, the surgery is risky, but ALL surgery is risky. >:O and :P!

I didn't say much, other that to say I'm glad she's here and that she's not really fighting for her life. It would be nice if everyone could react how I want them to, but of course that's not possible, because people are human and individuals, and that's a good thing! :D It just makes it a bit harder to hear people be less-than-positive because I'm dealing with my worry and anxiety about the surgery, so right now I'm needing positive stuff, not sorrow. Still, I can't really be mad at folks who express sorrow, because in a way they're just wanting the best for me, which shows they care. Um, does that make sense? It makes sense in my mind but I'm not sure I'm expressing it right because I'm starting to go blank again.

Lori & Dad are dropping by to visit Jennifer today, so I sent Jennifer's birthday present with them. I put together a little relaxation kit, with a CD of relaxing classical music, a Hot Stone Massage mini-kit, Ecalyptus Spearmint bath kit (in a green mug instead of the pouch shown), and soothing peppermint tea (some fancy brand I got at Marshall Field's). I think she could use it. :)

I have to go consolidate journals (i.e.: click a button). And then it's back to waiting, waiting, waiting, and missing my kitty.
xnera: Icon of Kyp/Tohru, hugging. Full of love! (full of love)
I kind of liked the name "Emma" better, but I had been thinking of her as Madison for a while name (I knew the name was in the running) so I'm already used to it. :)

Jennifer looks so, so radiant in the pictures. It makes me all blubbery. :) The boys looked like they enjoyed the ambulance, but were uncertain about the incubator. It IS a bit scary.

But oh, Madison looks beautiful! She actually looks a bit chubby, unlike Justin who is so LITTLE. I'm much relieved. I won't rest completely until I hear that the surgery has gone alright, but she looks like quite a trooper already.

Here's a picture. I'm probably going to take it offline in a couple days, because I feel weird about posting pics of the kids online.

Picture! )

Some info!

Dec. 28th, 2005 12:59 pm
xnera: Icon of Kyp/Tohru, hugging. Full of love! (full of love)
9 lbs, 1 ounce. She's got brown hair and blue eyes. :) I was kind of hoping she'd have curly blond hair like her brother Connor, but brown hair is good!

Still unsure of her name. Ed wants Madison, Jennifer wants Emma. I like Emma better. Jennifer thinks Ed is going to win, though.

They got to take pictures with her, but couldn't hold her. The hospital didn't do any assessments, but she's doing well. They're now headed to Milwaukee, where all the assessments and stuff will be done.
xnera: Icon of Kyp/Tohru, hugging. Full of love! (full of love)
She's here. :) No other info, though. Don't know name, weight, or length, or how she's doing. Ed was bringing Kyle up to see her, and then was going to swap and bring Connor up.

Sue (Jennifer's mother-in-law) is going to call us back as soon as she hears more news.
xnera: Icon of Kyp/Tohru, hugging. Full of love! (full of love)
Working on a longer post that will be posted publicly (or at least to all my friends instead of just to the tribe), but here's a short update on what I know so far.

The C-section was scheduled for 9:00 this morning. This means that Baby H. could be in the world already, and news just hasn't reached us yet. I'm expecting it'll be a while before we really hear anything, since SO MUCH is going on.

Diane (my sister's sis-in-law) is at the watching the boys. But they're at the hospital, not at home. The social worker said it'd be good for them to see the baby right when she's born, before she gets all the tubes put in her. This sounds like a great idea to me!

But *blink* social worker? This is news. My dad said that when Jennifer & Ed went to Children's Memorial here in Chicago to interview the staff, they had to chase all the doctors down themselves. But at the hospital in Milwaukee, Jennifer just sat in one room, and the social worker paraded the entire staff of doctors in to see her. So the social worker is like the team lead, making sure that Jennifer & the baby get the best care. I'm really glad they decided to go wit Milwaukee, then, because this sounds like it'd be a lot less stressful.

Once the baby is born and the boys get to see her, she'll be flown up to Milwaukee for her surgery. Jennifer will have to stay in Evanston to recuperate, so we're worried she'll get depressed. This is why I'm very glad that Diane is there with her. I'll have to get her phone number so I can call her to say hello. Ed will be going up to Milwaukee to handle things there.

And that's it so far. Now we just wait for news. I'm an emotional wreck today. I'm pretty calm at the moment, but I just want to KNOW already. I'll keep you updated as news comes.
xnera: Icon captioned "a woman bracing herself." (bracing)
Twenty-three hours and forty-four minutes.
xnera: Icon of Kyp/Tohru, hugging. Full of love! (full of love)
Unless things drastically change, my niece is scheduled to arrive on December 28th. Woohoo!

Her big brother Kyle is going to be disappointed that she's arriving before his birthday on the 30th. :)
xnera: Icon of Kyp/Tohru, hugging. Full of love! (full of love)
Just received an email from Jennifer (older sis):

Just wanted to let you know that we had an amino done last week to rule out chromosome disorders. The prelimary results all came out negative. They also verified it is definitely a girl! So no surprises there in the delivery room. Just wanted to share.


Yay! Glad to hear good news. :D

I'm getting more and more impatient for her to arrive. I know it's good for her to stay put as long as possible, and I'm trying to be patient. But I juat want her HERE so we can see her and hug her and love her. And I'm nervous about the surgeries she'll need. I'm confident they'll go fine, but it's still nervewracking.

I'm actually crying a bit right now. Just watery eyes. I haven't really dealt with this all in a while, I guess. It's been there, but I haven't let it HIT me for a while.

I'm trying to figure out how I'm going to announce her arrival on Hatrack, and to my friends list at large (right now this is still locked to the tribe). My desire is to be just matter-of-fact about it. Because here's the way I see it: everyone has challenges in their lives. Everyone. I have depression, my dad has diabetes, my younger sister has financial issues right now. It just so happens that we're going to know one of baby H.'s challenges at birth.

It's just... I don't want to say "she has spina bifida" and get lots of sad faces and "I'm sorry"'s. Because I'm just so, so thrilled we're GETTING her, when there was talk of not following through with the pregnancy. I'm getting a new neice! That's awesome! So I want to announce her birth and talk about her surgeries, but I want people to be happy for us, not all :(. And I don't know how to say that.

Okay. Too many emotions this weekend, I think. I need to go to the bathroom and dry my eyes. I'll be okay. :)
xnera: Icon captioned "a woman bracing herself." (tough times)
Good weekend. I'll tell you about it later. I don't have the proper energy at the moment to give it its due.

Never has this icon been more appropiate.

Mom called on Saturday to let me know that they got back from their cruise safe. I asked her if she had talked to Jennifer and what the news was there. She had.

Jennifer didn't have the amniotic fluid test last Tuesday. Both she and the doctor felt it wasn't really necessary, as that's more of a chromosonal (sp?) test and spina bifida's more of a birth defect. She did have a MRI on the baby on Friday, but mom didn't say what the results were (possibly they weren't back yet).

But mom said that Jennifer & Ed had to make a decision soon, likely over the weekend. And mom didn't sound too optimistic.

So, I am just bracing myself. Waiting to hear that I've lost another future neice or nephew.


And I'm scared, because I don't know how I'm going to react, or get through it. I was so, so devastated last time that I had to leave work after only an hour because I couldn't stop crying. It's just so, so sad. To be looking forward to getting to know someone, and then lose them before you have the chance to see them smile or hear them laugh.

I sometimes get mad at my family because I am the last to hear things, but in this case I want to be the last. I'd rather wait and not hear about this until Friday night so I can cry all weekend.

Right now I'm okay. Right now I think maybe I'll be able to handle it without completely falling apart at work. I can't really predict how I will react, though there is certainly fear that I will not be able to control my emotions. And of course there's nothing bad about crying over this. I think it's only natural. I just want to be able to go to work and do my job without having to worry that I'm going to lose it.

And I'm kind of tired, and not at all hungry. Maybe I will skip lunch and go for a walk instead.
xnera: Icon captioned "a woman bracing herself." (tough times)
edit: I just added a few more people to this filter. So if you're suddenly seeing this on your friends page and going "Huh?", the original post is here.

I've been reading up on Spina Bifida. It happens in the first 25 days of pregnancy, so you really need to be taking folic acid BEFORE you try conceiving in order to have a good chance of preventing it. Both of my sisters' current pregnancies are "Oops!" babies, so it's possible the 25 days passes before she even knew she was pregnant. :(

There's various degrees. Approximately 40% of the population might have some form of it and not even know, so it can be very, very mild. This kind of called Occulta. The other two are Meningocele and Myelomeningocele, with the prior being the more minor.

My mom talked to Jennifer last night. Jennifer sounded in better spirits. The doctors told her that the lower on the spine the problem is, the better off the baby is. It sounds like it's pretty low, so that's good news. The baby's head is enlarged, so it likely has hydrocephalus, but this is very common with spina bifida and fixable with a shunt. Dad just told me that a family friend had hydrocephalus as a kid, which was a surprise to me. He's now 35.

Jennifer told mom that the baby will get the best treatment, and be taken right to Children's Memorial. Hearing this relieved me VERY much, because it sounds like right now they're NOT planning to terminate. While I would support their decision if they did, I got very weepy this morning just thinking of the possibility. So this is good news to me.

She has more testing on Tuesday. They're going to test her amniotic fluid. So we'll hear more then.
xnera: Icon captioned "a woman bracing herself." (tough times)
Ran into my younger sister at lunch.

My older sister had her ultrasound yesterday. The baby has spinal bifida.

I don't know how to react. I got very teary, but now I'm kind of in shock and numb.

I will support whatever decision they make. I know this kind of stuff is very, very hard to deal with, and that some people aren't cut out to handle it. I'd like to think they are, but I just don't know. So if they decide to terminate, I will be sad because anytime a life ends so early is sad (I still get weepy over my younger sister's miscarriage). But I won't be angry at them, or feel they made the wrong choice, because I just don't know what I would do if I were them until something happens.

I have a lot of hope, though. Medical advances are happening so quickly that it's possible any problems the baby has can be fixed or dealt with. Also, a friend of mine is active with Not Dead Yet, and I've learned a lot about disabilities from him, and from seeing disabled people in the workplace and around town. Most disabled people I know are very happy with their lives, so I know even with some serious birth defects the baby could have a fulfilling and happy life.

I hope that the defects are minimum. And I pray that my family is strong enough to handle this. We're not good at talking about medical stuff. In fact, my mom told my younger sister the news, and the first thing she said is "Don't call Jennifer". WTF? I mean, I can't contact her to offer my support? That's crazy.

<"ME" moment>I'm now feeling anxious and jittery again. Gah. So much anxiety these days. I hope Golden Rule approves my insurance app so I can go to the psychiatrist, because the anxiety is getting bad.
</"ME" moment>

Those who are the praying types: can you say a few prayers that the problems the baby has are minimal? Would appreciate it. Also, that my sister's family has the stength to handle this, no matter what they decide. Thanks.

Not sure I'm going to post this to Hatrack. I kind of want to, but it's kind of personal so maybe I won't. I might email dkw though and ask her for some prayers.

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