Aug. 8th, 2006 07:59 pm
xnera: Icon of Kyp/Tohru, hugging. Full of love! (full of love)

My mom went to the zoo yesterday with Jennifer and the kids, so of course I had to ask her if she saw Madison move her feet. And she did! *dances* She's still wearing a brace, but she can be out of it for eight hours a day. Mom said that she's doing wonderful. I am so, so excited. I can't wait to see her again. I will probably blubber like mad the first time I see her move her feet.
xnera: Icon of Kyp/Tohru, hugging. Full of love! (full of love)
Maddy's surgery went well. :) It took only 40 minutes. I can't believe she's home already! She's got bright pink hard casts on her legs (hee!) that will have to be changed in 7-10 days. She also has a soft cast on her hip.

My mom talked to Jennifer. Jennifer said she was shocked when she saw Maddie after surgery and she was awake and active. Sounds like she took it really well! She doesn't appear to be in any pain. The doctor did give Jennifer some painkillers (Tylenol with Codiene, etc) but Jennifer's not going to give her any unless it looks like she really needs it. So far she gave her two regular Tylenol. Mom said she could hear Madison chattering in the background. :)

I confirmed with mom the reason for the surgery--it's so she has flexibility in her ankles. You could tell the tendons were tight, because her feet were always en pointe, like a ballerina's. So once she heals from the surgery, she'll be able to flex her ankles.

Now I am soooo having a pizza for dinner. I had a very light lunch, then came home early from work and crashed on the couch. Woke up very hungry. Yeah, it's pizza time!
xnera: Icon of Kyp/Tohru, hugging. Full of love! (full of love)
Requesting prayers and good vibes for my niece Madison, who's having surgery today to loosen tendons in her hip and ankles. The surgery started at 10:00 (I've been busy, and lost track of time) so it might be over already, but studies have shown that even retroactive prayer works. :D

I saw her on the 2nd when my family got together to celebrate Dad's birthday. I'm so very pleased with her progress! She sits up very nicely (her P.T. is pleased with this) and is trying to roll over. She can't manage it yet, as she lacks the upper body strength. She's a BIG baby (three pounds heavier than Justin, and they're the same length), so that hinders her. Plus she can't use her feet to push off. Heh--Justin loves to roll so much that he's got a blister on his push-off toe. *giggles* Silly boy.

Another problem with the rolling is that she's a content baby. You put her on her stomach, and she's like "Yup, this is good" and is happy to remain like that. She doesn't often make a fuss, so she's not getting upset enough to try to rectify the situation. The P.T. isn't too worried, and neither am I. That will come with time.

She'll have to be in a cast after her surgery. Last I heard, there was some uncertainty if it was going to be a hard or soft cast, but there was more talk towards a soft. Either way, it's probably going to be uncomfortable, what with the heat wave that's due to hit. :( Poor baby.

I just realised that I'm not sure I ever told my entire friends list about Madison... she has spina bifida and hydrocephalus. Spina bifida can cause paralysis, depending on where the lesion on the back is. The lower the lesion, the more movement you have. Luckily, Madison's lesion was very low--she has movement of her legs down to her ankles. :D The surgery today will hopefully give her some control over her ankles. *crosses fingers*

I'll let you know how the surgery went as soon as I hear some news.


Mar. 2nd, 2006 11:31 am
xnera: Icon of Kyp/Tohru, hugging. Full of love! (full of love)

Originally uploaded by xnera.
OMG, my sisters make such beautiful kidlets. *blubbers incoherently with love*
xnera: Icon of Kyp/Tohru, hugging. Full of love! (full of love)
I am very lazy today, so rather than retyping stuff you get a copy-and-paste from AIM.

xnera23 (10:39:32 AM): in other news, Madison had a shunt put in this weekend. She's doing just fine, and will probably come home today
xnera23 (10:39:58 AM): But I guess her incision on her back burst open a bit because of all the pressure from the excess fluid
mackillian (10:41:46 AM): ack O_O
xnera23 (10:42:34 AM): Yeah. I was kind of hoping she could do without a shunt, but I'm not upset or worried that she had to get one, because I knew there was a big possibility she'd need one
mackillian (10:42:42 AM): yup
mackillian (10:42:48 AM): it's the fluid that made me go O_O
xnera23 (10:42:53 AM): yeah :-(
xnera23 (10:43:00 AM): Jennifer says she looks much better already
mackillian (10:46:22 AM): oh good :-)
mackillian (10:46:47 AM): how long will the shunt have to be in?
xnera23 (10:47:46 AM): it's a permanent thing, as I understand. She'll need a few operations as she gets older to adjust it, but yeah, it's permanent
mackillian (10:48:16 AM): what makes it permanent?
mackillian (10:48:21 AM): (I know nothing of these things)
xnera23 (10:50:28 AM): Hydrocephalus is caused by excess fluid in the brain. In a normal person, the fluid drains automatically. In babies with spina bifida, it doesn't drain and the fluid builds up. So the shunt is put in to drain the fluid into the abdominal cavity.
xnera23 (10:51:03 AM): http://www.hydroassoc.org/information/information.htm

I'm hoping to get her story written up for Hatrack/general LJ friends list by the end of this week.
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.

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 of Kyo from Fruits Basket, captioned "BORED". (BORED)
My dreams this morning featured a Firefly/BSG crossover.

Sadly, I do not recall what it was about, except that it was cool.

In other news, I see that the Best 46 Free Utilities has had some updates. I've had a LOT less virii/spyware since installing some of the featured utilities, so I recommend checking them out.

In yet more news, it is now sixteen hours until my niece is born. (yes, scheduled C-section, which is why I know exactly when it will be).
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: Photo of my cat sniffing a vase of roses  (stop and smell the flowers)
I think I can breathe a little easier now. I had been bracing myself, waiting for some really bad news, but it looks like that's not going to happen. My sister gave my parents a book on Spina Bifida, which means they're invested in this, so yeah, no really bad news, I think.

The MRI showed that the lesion is in the lumbar region, or even lower. That's really good news, because the lower the lesion is, the better. They have a few options here. Jennifer can carry the baby to term, and then the baby will have an operation at birth to close the lesion. Another option is in-vitro surgery. But they decided against that for several reasons. First, 100% of babies who have the in-vitro surgery are delivered premature. They don't want the complications of a premature birth. But also, the procedure is currently under study, so they'd have to enter the study and if chosen for the surgery, Jennifer would have to go live at the hospital where they perform it for several months. And there's none close by. Bleargh.

So right now, they're planning to carry to term, or as long as possible. She's going to be monitored frequently to see how the baby is developing. If the hydrocephalus gets worse they might have to deliver early. Hopefully she'll be able to carry to term, or near term. The baby's very active right now, which I'm taking as a good sign. The doctors say, though, that we're really not going to know how bad it is until the baby arrives and they can see exactly where the lesion is and how bad it is. There's a good chance the baby will be able to walk, but a lot of folks with spina bifida end up using a wheelchair because it's more comfortable. Nothing wrong with that, if you ask me.

Mom asked them if they're going to start looking for a new house. Their current one is not very disabled-friendly. They're going to wait, though, until after the baby arrives so they can see what kind of adjustments they'll need to make. I think this is smart. I mean, even if the baby does need a wheelchair, that's not going to be in the first few years of life, probably, so they can wait a while.

Jennifer WAS taking pre-natal vitamins, even though this was an "oops" baby. So she was likely getting enough folic acid. The doctors can't explain what caused this. It's kind of hereditary, but not really. It's like, if you have one kid with it, you have a better chance of having another. But it's not really passed down. If Jennifer is going to have another kid, she needs to take mega-doses of folic acid. She said this is the last one, though. Both Lori and I will also need to take mega-doses of folic acid, as there is an increased chance that we might have a kid with spina bifida.

Ed said that he heard about a doctor in Boston who is during research with implanting... what was it? Neural stem cells, I think, at the base of the spine. They're going to try contacting him. Both Jennifer and Ed seemed pretty upbeat. I mean, not happy, but not, like, mourning, you know? It's like, they're determined to do whatever it takes to make sure the baby has the best care.

The baby will need to have shunt put in, but that shouldn't be too bad. One surgery at birth, another around the toddler years, and another at puberty. And then periodical checking to make ure there's no infection. Hopefully that's all the surgery the baby will need (plus the closing of the lesion). The doctors are saying that kids with spina bifida are about ten IQ points less than their siblings. There's a big range on IQ, though, so this might not be that bad (ten points doesn't sound bad to me). There's also the possibility there will be NO mental problems. We had a neighbor with spina bifida, and he was a very smart little boy.

So I'm much relieved at all the news. I mean, it's still a lot to deal with, but I don't think I'll need to be mourning the loss of another neice or nephew. And that makes me very, very happy. I'll keep you updated as I hear news.
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.


xnera: Photo of my cat sniffing a vase of roses  (Default)

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