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Archive for October, 2008

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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to just be left alone?  To go to a doctor and be told that its nothing to worry about?  To be able to tell people about your health without them immediately looking askance at you and doubting you until they see the medical records for themselves?

My pulmonary doctor called this morning with the results of my CT scan.  I told him I wasn’t worried.  He corrected me and let me know I should be.  I told him no one would believe me, that this much crap doesn’t happen to a single person in less than 3 years.  He laughed and said all they had to do was look at my records…I responded with “I’m not going to tote THOSE around the rest of my life!”

I need more surgery after Ruby is born.  I can’t deal with this.  I’ve been handling it…I have…and then a lovely friend sent me a lovely handmade gift for Ruby, and I LOST it when I opened it this afternoon (I was instructed in the top of the box to wait for the card which finally arrived today, even though I believe they were mailed together…gotta love rural mail systems).  The gift was lovely…and so touching, and I’m going to treasure everything in the box, and I do plan on putting them on her for pictures at the very least.  But it set me off into the crying jag that I haven’t allowed myself to have…I screamed at the ceiling, I screamed at God, and even though I thought I’d given it over to Him, I guess I hadn’t because I ended up on my knees, holding my belly, and BEGGING Him to let me have my baby.

And…I don’t feel any better about it now that I’ve let myself go.  I can’t keep doing this.  I’m not strong enough.  I’m crying as I type this.  I’ve cried so much my nose has been bleeding almost non-stop for hours.  I DON’T WANT TO DO THIS ANYMORE.

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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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Pulmonary Doctor Today

I was supposed to go yesterday, but I haven’t slept since Friday night. I think the only reason I was able to sleep Friday was because I was exhausted from the trip to Nashville. Since then, I’ve had about 4 1/2 hours total sleep. There was no way I could go yesterday as sick and exhausted as I was. Soooo I’m getting ready to leave here in about an hour.

I’m a little nervous, although I honestly don’t know why. I feel like my breathing problems are nothing less than what I expected when I found out I was pregnant. I figured as the baby grew, so would my difficulty breathing. My lung being completely cloudy on the x-ray now though isn’t quite what I expected lol. Its probably just bronchitis or something…I have no fever and really don’t feel “bad” at all, so I doubt its pneumonia. Besides, I had the pneumonia shot last year…I’m beginning to wonder if it was worth it since its supposed to last more than a year and I’ve already had pneumonia once this pregnancy (back in June) lol.

So wish me well…I’ll update when I can

As always, thanks for the continued prayers

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I wish I had a picture to post of her, but I reloaded my laptop a couple weeks ago and haven’t put any pictures back on it yet.  I’ll try to get a quick snapshot of her with my laptop camera when she comes home from school :)

Its so hard to believe that six years ago today, I was recovering from a c-section and holding my little “elf girl” in my arms for the first time.  I called her that because of my children, she was the only one who was beginning to be born when she was delivered, and her head was all crinkly and ridged and funny shaped (I was used to the perfect, round, “c-section heads” of Jared and Katie lol), and her ears were pointed because of the way she’d been lying in the womb I guess.  By a couple months they’d rounded out, but for a little while I called her my little elf, my little fairy girl, etc.

Yesterday after her party at the park (just family) we were on the way home and Katie was asking her all types of questions out of a survey book, I think to see what her personality is or something like that, and when she said “Do you believe in magic?” Bekah said, with absolutely no hesitation and complete certainty, “Yep!”  To have the innocense and faith of a child would be a truly wonderful thing.

My baby is six years old today…and is taller than either of my older kids were at this age.  I suppose she’ll be as tall as I am by the time she’s 12, but that’s ok :)

Happy Birthday Bekah!!!!!!!!

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Hi everyone…thanks so much for the comments and prayers.  They mean a lot to us, especially right now.

We’re at the airport waiting for our pilot to do his pre-flight check once his student gets here.  She’s a doctor, which is fairly cool IMO, since I’ve had a few contractions this morning and it will relieve my mind to know she’ll be in the air with us.  Our pilot also insisted on picking us up at the hotel when he found out we were going to have to pay for a cab.  God is still being good to us.

I haven’t completely given up hope, but I am realistic.  I don’t understand why God is allowing us to go through this, but I know He can bring us through it regardless, and that’s what I’m holding on to.  I’ve made it known, to Nashville, and to my local OB’s office today, that regardless of where I deliver, I’m open to donation of anything that is viable, and also am open to having samples taken for study.  If anyone can benefit from this, it will help me emotionally.

I had a very difficult day yesterday, and a worse night, but surprisingly, once I fell asleep, I slept deeper and more restfully than I’ve slept in months, even though I was having to sleep in a bed instead of my recliner at home.  I got about five hours of uninterrupted sleep, and I really needed it.  I’m doing ok today…Justin has been my rock and continues to be so for me.  I haven’t found my “strength” yet, but I know that when I get home and can hold my kids, I’ll be better.  All I wanted yesterday was to go home and hug them.

One of the most difficult things that happened yesterday was also bittersweet.  When we got back to the hotel room, I sat on the bed and was trying to hold it together.  Justin came and kneeled on the floor in front of me and just hugged me.  The minute he wrapped his arms around me and I leaned into him, Ruby kicked us both.  He hadn’t felt her kick before.  I lost it at that point, but I kind of like the memory now.

Feeling her kicking and moving is at times heartwarming and at times very bittersweet and painful.  I’m not sure how I’ll make it through the next several weeks, knowing that my baby is not going to live once she leaves the safety of my womb.  That hurts so much.  At times I find myself praying that she passes before she is born, as I’m afraid she’ll be literally suffocating when she’s born and therefor suffering, and I don’t like that thought at all.  I know how it feels to gasp for breath, and I can’t imagine not being able to breathe at all, and your body needing to.  Its driving me crazy thinking about it, so I’m trying not to dwell on it, and have been praying for God to ease Ruby’s way in whatever manner He can.

So.  Nashville is willing to deliver me, but if my OB in Hattiesburg agrees, I’ll deliver there since its at home and I know and trust him.  If he doesn’t, then I’ll still have to at the very least go to UMC in Jackson for delivery.  UMC and Vanderbilt are both bad options for me, since I won’t know the doctor who will be delivering me…and that causes me some stress and concern.

All of the medical team in Nashville met with us yesterday…and they all agreed that they think even though I’ve had three previous c-sections, and am definitely at risk for uterine rupture during labor, allowing me to labor and deliver naturally is the safest option for me due to the vast amount of scar tissue in my abdomen.  They said a c-section would be a very involved and complicated surgery for me due to the extent of the scarring and the areas covered, as well as my “unique” internal anatomy, and would put me at the most risk.  Even should my uterus rupture during labor, a hysterectomy done on me at that time could be done without a huge surgery, and would be safer on me than a c-section.  The main reason they don’t like to allow VBAC’s after two or more c-sections is because uterine rupture could kill the baby and removes a woman’s fertility prospects.  Neither of these are a concern in my situation now.

Hearing this recommendation was very hard on me.  I’ve always wanted a VBAC…I always wanted to DELIVER my babies…and now to be “allowed” to do so because the baby is going to die anyway and its the safest option for me…oh how that hurts.  But, I’m trying to look at it as a special memory I’ll have, one more thing to tie me to her.  Maybe this would be best, as I’d have a birth experience to remember…maybe it will make it and her more real to me…I don’t know.  But, if the doctors here in MS agree that its the safer option, that’s the way I’ll go.

I don’t know how much I’ll be blogging in the future…I may be having too difficult a time to share my emotions (I think I’m a little numb and definitely still in shock right now), but I may find that blogging helps me too.  I don’t know.  But, I know I will be back at some point…if I ever leave that is lol.

Prayers that I feel like we need right now are for peace…the strength will come, I know, but peace is what I feel like I really really need.  I haven’t gotten mad at God yet, although I’m sure that will come, as will the complete breakdown and crying jag that I haven’t allowed myself to have yet.  Once it does, I know I’ll feel better.

Thank you everyone for everything that has been done for us…donations, prayers, emails and comments, I can’t thank you enough.  Ruby has touched lives already, and I’m hoping that somehow, this experience will one day allow me to help others, and thereby help myself too.  That’s my fervent wish anyway.

Thanks again.

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