Not-so-good peri appointment - Mothering Forums
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#1 of 22 Old 12-07-2005, 06:38 PM - Thread Starter
 
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You ever get so much information that you don't even know where to begin when trying to process it all? That's where I'm at. So please forgive me if this sounds disjointed.

The good news first: my little guy is measuring BIG. He's a full 2 weeks ahead of the average 26-week old. His estimated weight is 2lb,6oz (average is 1lb,12oz). The peri said that if this is an indication of how the 2-vessel cord is restricting the baby's growth, then maybe we're lucky he's got it, 'cuz otherwise he'd be a 12-pounder at birth. (grin)

They did a full heart evaluation because 2-vessel cords can sometimes indicate cardiac problems and everything looked great. No problems whatsoever. So yippee for that! All of his other organs looked good today, too. No signs of swelling or anything like that.

Now for the not-so-good news: the baby's anemia level is now in the moderate range. The upper-moderate range, to be precise. That means that I have to see the peri more often and that my little guy is now experiencing oxygen deprivation, though no one can know right now to what degree and whether it will have a long-term effect on him. It also means that if things slide over into the severe range, Charley and I have to make a decision regarding whether we want to do in-utero transfusions or deliver early. Both options have risks. The transfusion carries a 6% chance of killing the baby then & there due to shock, plus there's all sorts of associated risks like triggering labor (and subsequent delivery), infection, harming the baby ('cuz they'd have to sedate him by a direct injection ~ the thought of which makes me feel ill. I can't imagine giving a baby a shot in-utero; it seems cruel), and lots of other things that I can't remember because my head is swimming with information. And early delivery obviously has risks ~ death, ROP (retinopathy of prematurity, which can cause blindness), infections, etc...I know I should remember everything I was told, but I can't right now. Anyone who's had a very premature baby knows all the risks I'm thinking of, though.

I also have an excess of amniotic fluid. I suspected as much because I had the same situation with Adam and this baby moves very much like he did ~ kind of all over the place really quickly, like he's floating *really* freely. Anyhow, it's not a big deal, but I figured I'm mention it just because it was one more thing we learned about at today's appointment. It does explain my sudden growth, though.

What else? I feel like I'm forgetting something, but I can't remember what it is. Oh well. If I remember later, I'll come back and post about it.

Charley and I have lots of talking to do, as well as researching the possible options. We were told that if a future appointment shows another large increase in anemia level like today's did, then we'll have to make decisions right away, so we are going to research all the possible complications of prematurity. Right now, without knowing FACTS, we are leaning toward delivering early versus doing transfusions if we have to make that choice. Of course, we're really hoping that the anemia doesn't get severe. I didn't ask what the chances are of it NOT happening...wish now I'd thought to ask that....sigh...

This is really, really, really depressing/stressful/overwhelming to me. I'm still hoping that we'll get a miracle and he'll be born a healthy, term baby. Even if he needs blood transfusions and bili-lights and other interventions at birth, that's better than him having all of the complications of severe anemia coupled with prematurity. Oh, and of course there's the 20% chance of stillbirth that was brought up today. That was a lousy thing to hear about and contemplate. I had read online about that possibility, but having the peri bring it up in discussion was really horrid.

Okay, now I know I'm rambling. I need to go try to process some of this, write down all the "pros and cons" of each option (transfusions versus early delivery) and pray.

Oh, here are a couple pictures from today. I think he is an especially-darling little guy, probably because I'm feeling so utterly worried and helpless with everything going on.

Hand next to face

Legs and cute baby feet
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#2 of 22 Old 12-07-2005, 07:35 PM
 
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Oh, Kate! ....as if you didn't already have enough on your plate!

You might find some relief in doing your own web research. One of the conditions my twins "might have had" was explained by my doctor to have a 50/50 survival rate....but when I went to support and research groups online, the survival rate was more like 75%. That's a big difference. I'm hoping your "chances" of all these things happening is similarly decreased when you look online.

He's adorable, by the way. I love the picture of his hand by his face. He looks so cute and chubby already!! Way to go mama!

For now it sounds like he's okay, right? I mean, the anemia is there, but it's just moderate right now. That's really, really good news--plus he's big, and his heart is okay. If you have questions about the anemia not happening, just call the peri and ask for the answer. It's better to call and get the info than wait and wonder. I hope you don't have to make any difficult decisions, and that he keeps on growing for weeks and weeks.

I don't know a whole lot about this, so forgive me if I say something foolish, but it seems like if you had to deliver early your little boy would be in good shape. He's measuring big, you'd know you'd be delivering early (and could get the steroids for lung development), and you alreay know his most pressing medical condition (the anemia) so it could be treated ASAP. I'm sure once this all settles down, the premature delivery vs. transfusion choice will become much, much clearer.

I'll be keeping you and your little boy in my thoughts, and hoping beyond hope that you get the miracle you deserve.

RedOak ~ Momma to DS (8) , DS (4) , DD (3) , & DD 9/10 ~
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#3 of 22 Old 12-07-2005, 07:48 PM
 
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Just want to let you know I'm praying for you. What hard thoughts to have to process!

I probably missed a thread that explained everything...but could you give a recap (or a link) about the specific condition your baby has? From this post it sounds like anemia due to a 2-vessel cord, but it occurred to me there might be other factors, too. Just trying to understand what the issues are.

Christine , wife of Ron , mama to Tony (4-25-03) and Maria (3-19-06) :
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#4 of 22 Old 12-07-2005, 09:28 PM - Thread Starter
 
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The problems facing my baby stem from an antibody-c/antigen-c reaction (maternal-fetal blood incompatibility).

Briefly put, the baby has antigen-c in his blood and my body has antibody-c from previous exposure to antigen-c (most likely during my first c-section with my twins), so my body's immune system recognizes the baby as foreign and the antibodies in my blood are continually destroying the baby's red blood cells (which contain the antigen-c). This causes anemia, which can lead to brain damage (from oxygen deprivation), in-utero jaundice (from excess bilirubin from the breakdown of destroyed red blood cells) which can also cause brain damage. Other complications that can occur are swelling of the liver, heart, kidneys, hydrocephalus in the brain, fetal hydrops (heart failure), stillbirth or death soon after birth from kernicterus (excess bilirubin that gets lodged in the brain). Long-term complications can include speech problems, motor problems and behaviors similar to autism. The only treatment is blood transfusions in-utero, where blood is injected into the umbilical artery, but the risks are substantial, so it's something that isn't done until the anemia level reaches a severe level.

This is similar to the blood incompatibility between Rh negative moms and Rh positive babies, but the difference is that there is no prevention in the form of RhoGAM. 98% of blood incompatibility deals with Rh, and of the remaining 2% of blood incompatibilities, only 6% involves antigen-c. So....it's a relatively rare situation and one I'd rather not be dealing with. And that is why this will be my last baby. The reaction of my body against a baby will get worse with each pregnancy (because my level of antibodies increases with each pregnancy) and I'm unwilling to go through this again. The perinatologist believes I got my first exposure to antigen-c during my c-section with my twins. My next pregnancy resulted in my son being born with jaundice, mild anemia, hypotonia and some breathing difficulties. It was ascertained that he had antigen-c in his blood and I had antibody-c, but no one bothered to tell me or my husband about it. Had we known, we wouldn't have gotten pregnant again. Anyhow, this baby is my 2nd pregnancy post-exposure, which is why we're seeing more of a reaction.

At birth, we're looking at the baby probably needing to have serial blood transfusions where they take a bit of his blood out and then put some fresh blood in and they do it over and over and over until enough of the antibodies that are in his blood have been removed. They have to remove the antibodies that are circulating because otherwise he will continue to have blood cells destroyed and the anemia can continue to worsen, even after birth. He'll probably also have to spend time getting bili-lights from both beneath his body and above, at the same time, because time will be of the essence in getting his bilirubin level lowered.

There's more to it, but that's the gist. It's enough to make me feel , that's for sure.

The 2-vessel cord is most likely just an incidental thing. While it occurs in only 1% of pregnancies and *can* be associated with chromosome abnormalities, everything looks perfect with the baby and nothing points to a genetic problem. Sometimes a 2-vessel cord causes IUGR and can sometimes lead to heart decelerations during labor/delivery, but a lot of times it's just something that happens and doesn't cause any trouble at all (which is what it's looking like for my little guy, thankfully).

I hope that answers your questions. If not, just let me know what else you'd like explained.
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#5 of 22 Old 12-07-2005, 10:31 PM
 
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How long are they going to wait until checking again? Hopefully you can at least make it to 30 weeks where the risks are greatly decreased. That's my magic number. If I can make it to at least 30 weeks this time, I'll be so happy! (ds was born at 31)
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#6 of 22 Old 12-08-2005, 12:31 AM
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Thanks for updating us, and letting us know so many specifics. The weight of all the possible problems must be so heavy to bear. I hope you are able to feel satisfied with your research and preparation. Having to make the big decisions yourselves is not fun, especially when it's based on hypotheticals as it is at this stage.

But I agree with Elizabeth, the baby sounds so strong and healthy. We'll all be keeping our fingers crossed that the anemia level stays where it is. Take good care of yourself and get all the stress relief you can. Can you get a pregnancy massage in your area? A good facial? Go for a swim?

Hang in there, and keep us posted as you can.

warmly,
Kam, mamamama! to Meg and one more
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#7 of 22 Old 12-08-2005, 11:31 AM
 
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Kate, thanks so much for the explanation. I'm sure you've had to explain it 1,000 times already; that was nice of you.

When I read your OP, I had a niggling feeling that what you were talking about was something like Rh incompatibility (which I know a little about b/c I'm Rh-). But it didn't sound quite the same, and now I know why.

Lordy, what a conundrum to be in. But I must say, it sounds like both you and baby are handling it incredibly well. Keep it up, mama. In the meantime, I'll keep on praying for you.

Christine , wife of Ron , mama to Tony (4-25-03) and Maria (3-19-06) :
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#8 of 22 Old 12-08-2005, 01:38 PM - Thread Starter
 
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Thanks, everyone. Brinda, I go back in in 2 weeks. If things are stable, I'll go every 2 weeks (alternate of when I see my ob, so I'll be seeing someone every week). If things start getting more dicey, I'll see the peri every week and my ob every other week.
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#9 of 22 Old 12-08-2005, 02:45 PM
 
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#10 of 22 Old 12-08-2005, 02:46 PM
 
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#11 of 22 Old 12-08-2005, 03:12 PM
 
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Hang in there! Your baby sounds healthy and strong.

My daughter also had a 2-vessel cord. I freaked out over it when the peri told me because I had never heard of such a thing. And having the peri tell me that a small percentage have heart or kidney abnormalities didn't help. I spent the rest of the pregnancy worrying about that small chance. I'm happy to say DD is normal in every way and she was nearly 7 pounds at birth.

Normal is just a setting on your dryer.
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#12 of 22 Old 12-08-2005, 03:48 PM
 
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#13 of 22 Old 12-08-2005, 03:58 PM
 
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What a tough decision. Sometimes researching can be so overwhelming in itsself, but you are an educated, aware mama. I hope that the next visit goes well and you don't have to worry about those decisions.

I'm thinking about you and your beautiful baby! Do keep us posted.

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#14 of 22 Old 12-08-2005, 04:50 PM
 
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I'm sorry you're going through this. I read your explanations and have a basic understanding of what you're saying and will pray for you and your family.

Following my 20-week ultrasound, my husband and I got some iffy news from our doctor who then referred us to a perinatologist. I was floored! I was scared, confused, and couldn't concentrate. I did as much research as I could and went to the peri appointment educated-or so I thought. The perinatologist told us so much and it went by so fast that I left even more scared and more confused. It took about a day for me to re-group and realize a few things.

I understand your feelings and just want to offer you hope. Those appointments suck and hearing so much news is totally overwhelming. My mom told me "your baby needs you to love her and concentrate on her, not stress out." It's true and it made me feel like I could at least do something while I worked out the details.

After digesting what my peri said and after doing my best to concentrate on eating right, exercising, and sending the baby mommy love, I felt better. We're still in uncertainty and will be until the baby's born but for now, every kick and push is a blessing and I try to focus on that. Every apple I eat and sip of water I take, it's just the least I could to remain normal and send this baby love like she deserves.

You still have so much hope and possibility. Good luck and I hope you can find some peace right now. I've been a Christian my whole life but I am surprised at how much peace God has brought me during this time. I hope that whatever faith or spiritual practice you may have will bring you additional peace as well.

Take care and don't loose hope.
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#15 of 22 Old 12-08-2005, 09:51 PM
 
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Hopefully, the anemia won't get worse and you won't have to make such a tough decision. I'll be praying for your little one!

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#16 of 22 Old 12-31-2005, 05:33 PM
 
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Hey, mama, how are things going with this issue?
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#17 of 22 Old 01-01-2006, 11:19 AM
 
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Mostly - I wanted to send prayers and hugs! (I am dropping in from May DDC)

While doing your research - you might also want to connect with other couples who have had premature babies. They might be a great source of information (like hints for pumping/kangaroo care etc as well as challenges they may have to overcome in dealing with hospital policys or personnel) as well as a source for support!

(Is there a forum on MDC?) - I see that lots of moms have responded to you - some with similar experiences!




Best Wishes
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#18 of 22 Old 01-01-2006, 01:32 PM
 
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Kate~ how are things going? I've been thinking about you a lot....is no news good news?

RedOak ~ Momma to DS (8) , DS (4) , DD (3) , & DD 9/10 ~
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#19 of 22 Old 01-01-2006, 02:41 PM - Thread Starter
 
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Last visit to the peri was just before Christmas and things were stable ~ no real change in either direction (good or bad), so that was actually reassuring.

I see the peri again on Tuesday and will post another update then. I'm feeling good, baby moves around a lot, and I've been told that as long as the anemia doesn't progress to "severe" range, my peri/ob will let the pregnancy continue. So......we're just hoping it stays below the severe range for another 60 days (scheduled c-section is March 2nd).

I didn't post any update before Christmas just 'cuz there wasn't any new news to share, ya know? Just a "things are about the same". Thank you so much for thinking of me, though. I'll do a better job of keeping you updated, even if it's a "no real news" type of post.
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#20 of 22 Old 01-01-2006, 08:18 PM
 
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Glad to hear things are stable!!! I hope things go well from here on out.
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#21 of 22 Old 01-03-2006, 04:12 AM
 
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#22 of 22 Old 01-03-2006, 11:40 AM
 
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Still sending good thoughts your way....

Christine , wife of Ron , mama to Tony (4-25-03) and Maria (3-19-06) :
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