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more surgery!  Yippee!

*Sigh*

I’m not going to post all that the cardio-thoracic surgeon told me today.  Quite frankly, if I weren’t living this drama, I wouldn’t believe the crap myself.  Its too much for any one person to have to go through, seriously.  The surgeon thought Justin and I were insane…we just started chuckling as he was talking, and ended up laughing uproariously by the time he was done.  He said “This is a very serious thing, nothing to laugh about!” and I told him “Honestly, if you look in the files at my history, you’ll see that I HAVE to laugh or I’ll commit suicide or end up in a straight jacket.”  I mean, really.  I also said “Well, it is me after all…and we know I can’t do anything half-way!”  That’s what caused Justin and me to start laughing like maniacs.

I’m tired.  This will not be a simple hernia repair surgery.  There’s more involved to it…in a nutshell…90% +/- of my bowels are in my right chest.  Most of my right lung couldn’t be visualized at all because of the intestines, and my right lung is completely deflated from what they can tell.  Massive “blowout” on the right side of my diaphraghm.  AND the kicker…the top of my right lung may not be “viable” by the time they’re able to do the surgery.  Because of the hormones from pregnancy and such, they don’t think my tissue will hold a repair right now, so I have to wait until February at least to have it done.  So I go back on February 2.  Oh and they can’t go through my abdomen, because they think part of my bowels have adhered to my lung.  They have to go in through my chest (the side wall).  Lovely.  He said there’s a good chance I’ll need more than one surgery to get it all taken care of.  Wonderful.

A lot more was said…some more little things that are wrong, but that’s the gist of it basically.  He did joke with me that after the surgery he’d want me to do lots of jumping jacks to make everything go back down.  Hey, at least he has a sense of humor.  They also asked if it would be ok to have student doctors in for exams and the surgery.  I told them sure, the more the merrier.  He said he does one really large hernia repair a year on average (out of the normal range) and that mine will be the largest he’s ever seen/done.  That’s when I started laughing and making the wise cracks.  I mean come on.

He showed me my CT scan from Saturday night (the day after Ruby was born) and explained to me what we were seeing.  The differences between the right and left sides were amazing once he explained it to us.

Anyway.  I also saw my OB today, and got the rest of my staples out.  THAT is healing very well, and I’m doing great all around other than still having to be on oxygen (until at least February now!) and I still have blood pressure that’s too high.  Preeclampsia is supposed to go away within a couple weeks of delivery, so hopefully that will be resolved soon as well.  Today was 162/104.  Not excessively high, just higher than they like to see.

I’ve lost all the baby weight + 4 pounds though 🙂  I started out at 133 when I got pregnant, dropped WAY down before I started gaining around 5 months or so, and ended up at 161 the day Ruby was born.  This morning I weighed 129.  Now if I could do something about the hips…

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Just Checking In

First of all, thanks so much for the heartwarming comments.

This won’t be much of an update, as I’m still falling asleep every time I sit still for more than a minute or two, but I’m staying awake more than I was, so its improvement.

I have no memories of holding Ruby.  I specifically asked to not be given any drugs after the c-section, saying I wanted to be as clear-headed as possible.  Justin walked back into the OR with the baby after showing her to our moms, and heard the anesthesiologist ask me if I wanted something to make me feel better.  I, already on drugs, said yes, and before he could stop her, she’d pushed the medication and I was literally out right then and there.  However, Justin took a lot of pictures, and has several of me holding her.

The picture above was taken after she died, and the nurses cleaned her up and dressed her up for us.  She’s the most beautiful baby I’ve ever seen…I only wish I’d had the chance to watch her grow and develop, but it wasn’t meant to be.  Her passing was very peaceful I’ve been told.  Justin and Mom said she didn’t appear to suffer in any way at all, and just peacefully stopped breathing.

Now, how am I doing?  Of course I couldn’t be recovering easily, that’s a given lol.  Seriously though, I am doing very well, all things considered.  The vertical c-section has been WAY easier on me than the bikini cut ones were…pain is minimal, and the incision itself looks very good.  I however am worrying them all.  The preeclampsia still persists, so they’re watching that.  My left side is pretty swollen.  They estimate 90% of my intestines are up in my chest cavity, and that I have no real lung function on the right side.  They want to do surgery to correct this within 6-8 weeks.  They’re going to see me back 4 weeks post-op to see how and when they need to proceed.

Other than that, I’m doing very well, and Justin and I are holding in there.  My mother- and father-in-law came up today and picked Ruby up and took her back to the funeral home in Poplarville with them.  As soon as I get out of the hospital and can move around, we’ll have a small, private graveside service for her at the cemetary.

There’s so much more to say, but I seriously can’t stay awake or keep my thoughts coherent right now.  I’ll try to make a better update later, and will also try to get more pictures up.

Again, thanks for the prayers and wonderful thoughts.

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Waiting For the O.R.

I’m sitting here all prepped up, waiting for the O.R. to clear so they can take me in.  Its almost 7pm as I type this.  I’m a nervous wreck.  I’ve had two big doses of magnesium to try to get my BP down, and they just gave me a dose of something else because my BP hit 178/110 a few minutes ago.  Fun times.

I’m not ready for this.  Please continue to keep us in your prayers.   I’m praying desperately for my miracle, but in my heart, I’m so afraid, for Ruby and for me.

Thanks.

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I had more protein in my urine today than I did Wednesday, and my BP was 160/100, so they’re sending me and my jug o’pee to UMC (UMC can do the lab right there…my clinic would have had to send it out and it’d be Monday before they got results).

We’re having a baby, just not sure if its today or tomorrow (they may want to keep me for the bowel prep and deliver tomorrow, we’re not sure yet).

Please keep us in your prayers…I’m not ready to say goodbye yet.  I’m still praying for my miracle, but…well ya know.

Thanks

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I’m trying REALLY hard not to read too much into this.

We went to UMC today, fully prepared to stay if necessary.  In the beginning, they talked about me staying and delivering me right away.  Then they did the ultrasound.  Her intestines are still in the wrong place, but for some reason, maybe her presentation, we could see her lungs, or what she has of them.  I saw them clearly because he pointed them out to the other doctor in there with us.  They were lungs…they were shaped like lungs.  They were very very small, I’d say smaller than her heart looked but I don’t know what ratio they had the machine on at that point.  The doctor was a little surprised but still shrugged it off as they were so small.  Then he made note of the fact that she had fetal breathing movements, and how surprised he was by that.  He kept going back to her chest repeatedly, and pointing out the “breathing” to the other doctor.  I of course had my ears pricked up as much as possible, and I saw her breathing movements.  My eyes teared up.  I just KNOW that she wants to live.

So after all that, he still proceeds to tell me there’s no chance at life after birth for her, etc etc.  Nothing we weren’t already prepared to hear.  BUT he then says he wants me to wait until 37 weeks to deliver.  WTH?  I’m having trouble breathing, my sugar is all over the place, and I swelled up like a blimp on the ride home (serious pain in the legs and hands I was swelling so fast).  Why do you want to wait just over four more weeks?  I’ll actually be 38 or so when they scheduled me…November 24.  So we left.

My mind is racing fast forward, and Justin is trying to convince me not to get my hopes up.  I’m really trying not to, I am…but why say you’re going to deliver me “immediately” and then change it to November 24?  Why keep coming back and looking at her chest when you’ve been able to see it every time? (UMC has never had a problem seeing her chest…it was up at Vanderbilt that she was being difficult)

I’m afraid.  I’m afraid of getting my hopes up and having them dashed again.  I’m afraid of having her here and losing her because we’re not at Vanderbilt.  I’m afraid of so many things, but I’m trying to sit back and let God drive.  They prayed for me at my mom’s friend’s church, and a prophecy was given…Mom didn’t write it down when they told her what it was, and keeps forgetting to call the lady who did write it down, but she said she got chills when she heard it.  I think I NEED to know now what that prophecy was.

I don’t know if I can take this constant up and down.  I want to just proceed as if she won’t make it, finish making the arrangements, and if anything changes, have a very wonderful surprise.  But I can’t help hoping, and that’s setting myself up for a fall…plus I don’t want to make it seem like I don’t have faith in God.  I do…but I’m realistic too.  I’m 99% sure I’ll be burying my baby in November…but oh, how amazingly wonderful if that’s not what happens.

So now we wait.  I had contractions pretty bad on the way home, and while they’ve eased up since I’ve had my feet up, I still have one every half hour or so that absolutely takes my breath away and makes me vocalize my discomfort, if you get my point.  Its not four an hour, so I’m sitting tight.  I don’t know what’s going to happen…but I’m holding out hope, and in the meantime making sure I’m prepared for the worst.

Oddly enough, I still feel peaceful about the whole thing…keep praying for us that the peace continues

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I just got home from my OB.  He won’t deliver me in Hattiesburg…he’s concerned not only about my scar tissue but also about the reconstruction in my abdomen they did in 2006.  My organs aren’t where they’re supposed to be.  He wants me delivered either at Ochsner or UMC.  I prefer Ochsner because my surgical records AND my surgeon are there, but its easier to get me in quickly to UMC so that’s the route we finally decided on when we were leaving.  He’s going to shoot to get me in next week with their OBs there, and talk to the perinatologist I’ve been seeing, and see if they’ll be willing to let me try a vaginal delivery.   He expects Ruby to be delivered as soon as they can arrange it, as the longer I carry her, the worse my health gets.

I feel like I’m killing her.  I know I’m not.  But…I feel her moving, and I feel like I’m taking away any possible chance she has, even though my brain tells me she has virtually no lung tissue and its not ME that will be killing her.  My HEART says otherwise.

My OB feels that after three c-sections, a vaginal delivery wouldn’t be an option for any woman, but for me he thinks it might be the best way to go to keep from going into my “unusual” abdominal situation.  He said if he were confident there were enough specialists in Hattiesburg to be on hand should the situation warrant it, he might go ahead and do a c-section on me, but the simple fact is that the best colorectal surgeons are at UMC and Ochsner.

So it looks like I’ll have a huge team on hand regardless of whether I deliver vaginally or surgically.  I just don’t know what I want to do yet as far as c-sections go…whether I want to be awake or asleep.  I kept thinking I wanted to be asleep…but now I’m thinking I might need to be awake.  So we’ll see what happens.

As far as surgery on me after the delivery goes, my OB is hopeful that my diaphragm isn’t ruptured but is twisted up between my bowel and lung and just wasn’t visualized, and delivering Ruby will correct the situation without having to have surgery right away.  We’ll be praying for that as well.

Thanks for all the thoughts and prayers.  We’re nearing the end of this journey.  I’m still upset and still crying at the drop of a hat, but I’m hanging on too.   I don’t want to give up…I feel like I’ve tried harder for Ruby than I’ve ever tried harder at ANYTHING in my life, and it just wasn’t good enough.  I know there’s a reason for it all though…even though I don’t yet know what that reason is…its the only comfort I can find.

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Its 8:21 as I begin to type this, and I just got home.  What a day.

My unbelievable medical journey has just gotten more unbelievable.   So hang in there.  Thank GOD the hospital I was at today has all my medical records from everywhere else so I not only don’t have to explain everything, but also don’t have to deal with the disbelieving looks until they see the records, because they check them before they come in.  Whew.

I got my x-rays from the hospital, then went to the pulmonary specialist.  He finally came in and started talking about my breathing issues…I said “I think I’m just pregnant!” and laughed, and he laughed too and looked at my belly and said “Well you’re obviously that, but that’s not what all is going on with you.”  Great.

LONG story short, he sent me over to the hospital for a CT scan to confirm what he’d seen on the x-ray and what his suspicions were.  My twisted diaphragm (from the liver surgeries and my liver regrowing weird, pushing everything around, and causing the partial collapse of the lower lobe of my right lung) apparently has either herniated or just twisted enough that my intestines (not sure which one, I didn’t ask, but I assume the one that was surgically attached directly to my liver two years ago to compensate for my damaged bile duct) have crept up into my chest as Miss Ruby has grown.  This causes pressure on my lung and is part of the problem with my difficulty breathing.  My oxygen sats are lower than they like, but within “normal, but watch” range.  Because of Ruby’s prognosis last week, the doctor believes its in my best interest to deliver her as soon as possible, because I do have a mild heart condition as well and my body is working overtime now with everything going on.

On the drive up to Hattiesburg today, I started having sharp, stabbing pains in my lower abdomen and back, and when I got out, I could barely walk.  Moving my legs caused an intense pain “down below” and made me feel like something was literally lodged there.  So while I waited at the hospital for the CT scan, I called my OB’s office just to tell them what was going on.  They wanted me to go up to L&D after the scan and be assessed since I was already there, am high risk, and live an hour away.

So that’s where I was the rest of the afternoon 🙂  I’m having contractions, fairly regular, but they’re not real strong, and he said I could come home if I wanted (I wanted!).  They were going to give me the shot of…can’t spell it…turbeline? Something like that…to stop the contractions, but with my tachycardia and gestational diabetes, he decided against it.  My cervix is still closed and thick.  I looked good basically :)

A lot of discussion today about what to do with the baby.  My OB is going to have all the information available and the assumption I left the hospital with was that the on-call OB and he were going to get together and discuss today, and last week’s diagnosis, and talk to my pulmonary doctor, and decide what is in my best interest as far as my health goes.  I would love to keep carrying Ruby, in the hopes that God will work the miracle that *I* desire, but at the same time…its so painful emotionally, and part of me is ready for this journey to end.

I’ve had several people mention the professional photographers that will take portraits of babies who don’t survive, and I’m definitely going to look into that.  Macabre perhaps, but I’ll need that reminder…her face looks so precious on 4D, and I’m going to want a better, more permanent reminder.

For those of you who are worried about me, please don’t be 🙂  Right now, I’m doing ok.  Thursday and Friday last week were terribly difficult for me, but I’m doing better now.  Night time is still difficult for me, but I think the real trials will come once she’s delivered.  So…right now, I’m ok.  Justin is my rock, as usual, but I know he’s hurting too.  Please continue to keep us in your prayers

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