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Wednesday, February 14, 2007

Updates, rants, a little of everything (looooong)

For you, Dad, since you told me the other day that it'd been a long time since I updated. I stayed awake to do it just for you. Feel special now?! :P
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I did not want to post details about Sasha until Ivy did so (that and she's knows so much more about Sasha's condition than I do, of course, and I didn't want to report incorrect information) hence my post yesterday. Sasha's having a rough go (putting it mildly) right now. I'm just going to c&p what Ivy posted on Sasha's site today:

"Unfortunately, things have taken a big turn for the worse for Sasha. She was doing GREAT...we were even sent "home". Monday night (middle of the night Tuesday) she developed a fever, was throwing up, wouldn't eat, and wouldn't wake up very easily. We took her to the ER. After numerous tests, it was concluded that her hepatic artery had clotted off, basically killing her new liver. Right now, she is in critical condition in the ICU. Thankfully, she is holding steady for now, but if she does not get new liver VERY soon, she won't make it. She is listed as a status 1A, meaning first available in our region. I'll try to keep this updated, but it's hard to leave her room."

I'm at a loss right now. I wish that I had some magic words for Ivy; I felt so inadequate when I was talking to her yesterday. Our children had/have very different problems but I KNOW how it is when your child is doing well one minute and the next is in extremely critical condition. I want to make it better for their family and I'm pissed off that I can't. I don't know what to do right now.

And on a purely selfish note, it brought Drew's sudden turnaround back to the forefront of my mind. (Ivy, don't you even worry about that. Many things remind me of Drew and all I want is for Sasha to be ok. You call me ANYTIME you guys need ANYTHING...I mean it.) I've been crying for both Sasha and Drew these past couple of days.
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A little note to let people know that I've recently discovered a problem with my Rainbow of Hope e-mail and am now receiving e-mail from months ago. I don't know what was up but I've gotten everything in a timely manner over the past couple of months and then the other day, e-mail from October, November, etc. began showing up in my inbox. I will work on replying to everyone but it will take me some time--I wasn't ignoring anyone! Oh, and I have to check my settings because I can't send outgoing mail on that account at the moment even though GoDaddy says that I should be able to do so. So if you get an e-mail from me from another address, it's my personal e-mail.
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The clergy department at OU Medical Center does some wonderful things for those of us suffering the loss of our children. A volunteer clergyman baptized Drew for us in the NICU, filled out paperwork for the funeral home, called UNOS about donating Drew's organs, etc. They also hold the yearly Walk to Remember that we attended last year.

One thing that that do that I have really appreciated is that they send out a calender, letter, articles of inspiration/support, etc. to you in the year after you lose your child. It is sent out every other month and on the calender, the babies lost in the previous year are named on the 1-year anniversary of their passing. Um, the next issue will have Drew's name on it. :~( I don't know why this upsets me so much. I KNOW that he's gone, trust me, I know. But anytime I see it in writing, it hits me all over again. You would be amazed at the number of children who pass away at the hospital in any given month--to me it seems as though Drew was the only one that has ever died there. Irrational, I know but as I've said before, many of my thoughts or lack thereof this past year or so are irrational. I've learned to live with it.

I'll scan in the calender with Drew's name on it when it arrives next month. For me more than anyone else, I suppose.
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Raymond used to work with a very nice man (they're still buds) who had twins in the NICU at OU last summer. I've corresponded with him a bit online and he told me something that made me cry but they were happy tears. He said that when they were in the NICU with their boys, they met many people who worked there who remembered Drew. It made me happy to know that Drew made an impact on those who cared for him when we couldn't. BTW, his twins are doing well now. :)
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I was watching Discovery Health over the weekend and caught a show that I know that I've seen in the past. This time it had an impact on me in a very different way.

The show was "Extreme Surgery" and they were following a little girl named Heather Keister who had severe scolosis. They were following the surgery to straighten her spine because if they did not, her lungs would eventually be crushed. Why am I talking about this you're wondering?

Because there was a very quick blurb about her already overcoming huge obstacles in her life as she was born with a hole in her diaphragm and one lung. They never used the words "congenital diaphragmatic hernia" but that's what it was.

Before Drew, when I first saw this show (it aired originally in 2004, I think) it never even registered to me. From the VERY quick way they described her CDH, it was much like Drew's in its severity.

So that got me interested in this little girl as, obviously, she survived. I googled her name and came across this little blurb:

"And then there was 7-old-year Heather Keister walking up to people at the Ward Jamboree in Sep-tember asking if they wanted her autograph. "She's been handing out her autograph all over Cabot and I guess it's now Ward's turn," her mother said. You see, Heather appeared on a real reality survivor television show on the Discovery Channel. The show was Extreme Surgery and Heather's was one of the featured operations. "She was born with just one lung and had just a 10 percent chance of living," her mother explained. "In December she went in for major surgery (the one that was shown on television) on her back and to have two ribs removed to help fill in the empty space of the missing lung." Heather will need a back operation about every two years until she's an adult to prevent severe spine disfiguration and back problems. "Right now she thinks she's a movie star," her mother said in September as Heather went off to give her autograph to another group of Jamboree visitors." Source

On all of these medical shows that I watch (have always watched them), I now seek out things about CDH. I remember an episode of "Special Delivery" that I watched a few years ago. It showed a baby on ECMO, spoke about how it's a last resort treatment, etc. and the baby died. I remember thinking, "Oh, how sad," never knowing that *my* child would face that in their life.
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Ok, I'm 7 months pregnant. I am aware of that fact, thank you very much. So why the comments about me looking like I'm carrying twins or am due any day?! I'm smaller than I was with Drew, that's for darn sure. And God bless my mother-in-law and mother; they both told me that no, I'm not freaking huge like some people (random strangers, no less) seem to think.

The latest was my in-laws realtor who asked when I was due, if I was sure it wasn't twins, and kept going on and on, even after I'd walked away. It doesn't really bother me TOO much but damn, I'm aware my stomach is large (as is my behind). That hopefully means I'm not going to have a little peanut like Elizabeth was (5 lbs. 11 oz. full term).

You just shouldn't say that stuff to pregnant women. The next person who does is going to be very embarrassed because I've decided that I'm going to break down in tears and just sob. And I'm NOT kidding. :D
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This will likely piss some people off but I don't really care at this point. The issue is abortion/termination of pregnancy. Would I do it? Obviously not since I had the option to terminate for medical reasons with Drew and chose not to do so. I could have terminated Carson for emotional reasons. Trust me, it's hell to have a due date on the 1 year anniversary of the death of your first son. I don't like it and don't agree with it. I absolutely believe that life begins at conception. Those are my beliefs.

HOWEVER, I do not appreciate the e-mails and bulletins that I am receivng about how utterly horrific abortion is for anyone and everyone. BULLSHIT. The ones that describe month-by-month a baby's development, "thoughts," and how the baby feels if you abort at that time. It plays on emotions and frankly, no one knows what a fetus thinks/feels for sure. It offends my sensibilities and I view such tactics as irrational and irresponsible.

You (general) should not have the right to tell me what to do with my body or anyone else's. Period. Worry about your own self, 'k? You should not be the 'decider' on whether or not I could have aborted a terminally ill child.

I was pro-life before facing the decision that we had to make in 2005. My entire attitude changed that day. If you haven't had to contemplate termination, good for you (seriously). But don't you tell anyone who has terminated that they're a murderer, scum, etc. You just might not know the circumstances under which the termination occurred.

I've heard from a few CDH mothers who terminated after extensive testing showed that survival of their babies was all but impossible. They've been called everything/name under the sun and told that they're "heartless." Give me a f'ing break. YOU DON'T KNOW unless you've been there.

In other words, I don't like abortion. I would never in my life choose it for me. But you damn well better believe that I will now defend the rights of every woman in this country to decide what to do with their body. So please stop sending me the pro-life rhetoric that plays on emotions.

Sorry, this has been building for a while and I don't expect people to agree with me but this is MY blog and I'll post MY feelings on the issue. Just like it's MY body and I'll do what I want to with it. Stepping down off of my soapbox now.
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Finally, a word about Anna Nicole Smith. I've never been a fan of hers--she was just too over the top for my taste. She seemed to adore her son who died 5 months ago. That's when I began to take notice of her and feel for her.

We had both lost our son's and people would not leave her the hell alone to grieve. I really felt for her and didn't criticize ANY of her actions because hey, I know that one can act a bit crazy after such a loss. I know that I did in some ways.

I am so saddened that she is now dead, leaving her little girl without a mother. My first thought was suicide over the death of her son. I don't know the cause, it's none of my business but I just wish the media would let the woman RIP at this point. The father issue has to be resolved, yes, but notice how most of the men have come out the woodwork AFTER her death? Think the money the baby will most likely inherit has anything to do with it?

Blech, the whole media/paternity crap makes me sick. I just hope that ANS is with her son, wherever that may be, and is finally at peace.
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There, now you have my views on some stuff and I'm going to go crash, you know, since I'm SO FREAKING HUGELY PREGNANT. (And obviously hormonal.)

6 comments:

Anonymous said...

HUGS- I am so sorry you are having such a rough time lately. I hate to hear that Sasha is doing badly. If they need anything let me know. I can't imagine what they are going through right now. Please know they are in my prayers.
Christina

Kathy McC said...

First, I am so sorry to hear Sasha is doing so critically...I will keep her and her family in my prayers.

I hear you on the abortion issue. While for myself I can say I would not do it, I don't think it's anyone else's place to tell you what to do with your body and your life. When I was pregnant with Aaron, an ultrasound showed that he might have Trisomy 18, which would have meant certain death shortly after birth. They told me to have an amnio and consider termination if he did in fact have the disorder we thought he might have. I decided not to even have the amnio and I knew I'd never terminate. The fears sat in the back of my head for the rest of my pregnancy with him, but I knew that for me, I just couldn't do it. But I can't say that anyone else would react that way, or if I would do the same thing if it had happened again with another child...it's just hard to say.

I also saw the show on the little girl with the spinal issue. It never even occured to me that she had CDH because they mentioned it so briefly.

(((hugs))) and I hope people start minding their own business!! :-)

Gina said...

My thougts will be with Sasha and her family. I can't imagine their pain.

I also agree with your POV on abortion. It shoudl be the womans right to choose what is best for the child/mother, although it is not for everyone.

Anna Nichole Ssmith.... She might have had a not so good life but I feel compassion for her. She is a human being and deserves respect. I hope her daughter ends up in good hands cause that baby needs love and a stable life.

Before Drew, I never heard about CDH and now I hear more and more about it. Maybe I didn't pay attention to it before, I don't know. I felt weird cause I hardly posted with you at DIM on SK but I just felt connected. My birthday is April 16th too. Ok, I'm rambling now....

Julie said...

Sasha is a beautiful child! She is in my prayers!
I can not believe people are trying to tell you what to do with your body- you of all people.
I am sorry. I wish people would think before they speak...
I am glad your dad made you update... I was wondering what you were up to!
Hang in there and know you and your family are never far from my thoughts!
XO
J

carole said...

I'm keeping Sasha and her family in my prayers. How devastating to have all this turn back around. I hear you 100% on the abortion. It wasn't something I wanted for myself...or could necessarily do. But having had to face this...you're right. Everyone has to choose for themselves.

Why, why, why do people tell pregnant women they look like they are having twins? I got that all the time with Zak. I say...let it inspire some nasty comments. They *deserve* it.

Let me know if there is anything I can do for Sasha and fam. I'm thinking of you.
~Carole

Lauren said...

Jana, I am so sorry to hear about Sasha. It seemed that she was doing so well. It never ceases to amaze me how quickly life can change.

About abortion, I don't totally agree with it either. I've never judged anyone for their choices, because like you said, we don't know someone else's situation unless we are faced with it. I didn't know if I could ever do it or not. But the minute I knew that I was pregnant, that was my baby inside of me, and I could never have stopped fighting for her. She deserved every chance to fight and I gave it to her.

I'm glad to read this update. I've been thinking of you as Drew's birthday (and Carson's birthday) get closer. I know you're uncomfortable, but I bet you're beautiful! I hope you're taking lots of pictures of that HUGE belly!

Love Lauren