# Long past-due update...



## claireb (Apr 7, 2009)

Hi ladies









I am writing this update with my tail between my legs because I'm so ashamed of how long it's been since I've managed to let you all know how things are going, especially when you all have been amazing and wonderful about thinking about and praying for me.









The only thing I can offer by way of explanation for the lack of update thus far is that I've been so overwhelmed by frightening information that it's hard for me to find the motivation to type it all out. Add to that the fact that EVERYONE I KNOW calls me weekly after my ultrasounds to find out what the update is, so by the time I fill them in, I'm pretty much tired of thinking about it/worrying about it/etc.

I have been surviving these days by trying not to think about the fears I have and the reality of the danger of this pregnancy...and I guess part of not thinking about it has mean not posting about it. I've been lurking, sometimes responding to others' posts, which is easier for me because I'm not focused on MY situation...but I also feel like you women have been so wonderfully supportive that I want to let you know how important that support is to me.

So...please accept my apologies for not updating sooner, and PLEASE DO NOT THINK that the lack of update indicates a lack of appreciation for your kind words and thoughts. I appreciate them more than you know.

*Background*

I have been going in for weekly ultrasounds. As most of you know, my quadruplets spontaneously reduced to twins by 11 weeks, at which point the doctors were optimistic that I'd carry healthy twins.

At about 11 weeks or so, I went in for an ultrasound and they found out that one of the twins (Twin A) no longer had *any* amniotic fluid. None whatsoever. This was only 5 days after an ultrasound showing that its amniotic fluid was fine and both babies looked healthy.

So the doctors assumed that sometime in those 5 days, I had "ruptured membranes" on Twin A, thereby leading to a fatal prognosis for that baby.

I went to the hospital for a more in-depth ultrasound, and that showed that Twin A was measuring normal (size wise) and had a heartbeat in the normal range, but was anhydramniotic (no fluid). That scan also showed that Twin B was doing fine, measuring well, good fluid, good heartbeat.

They were very VERY "gloom and doom" about the chances of my carrying the pregnancy because they were thinking that my body would likely misunderstand the situation and assume I was miscarrying the entire pregnancy. Or they were concerned that Twin A would die and cause an infection in my uterus and kill Twin B as a result. Or they were concerned that I had an infection in the amniotic fluid and that Twin B would also rupture membranes. OR they were concerned because I had two rather large blood clots in my uterus that they were afraid would bleed out and cause miscarriage.

So I was given four different ways that this pregnancy was doomed, and not much hope.







It was a horrible time (as most of you know from my previous post).

They scheduled me for weekly ultrasounds at the hospital. Normally I wouldn't want that much intervention (obviously) but with this situation, I felt it was important to monitor the babies.

I have gone in each week for the past month (??) or so.

*Update on Twin A*

Good news: Twin A is still alive!!!





















He/she still has a healthy heartbeat (NO signs of cardiac distress, whatsoever...NONE







) and is measuring properly for his/her gestational age. He also had NO amniotic fluid at that terrible ultrasound, but for the past two weeks, they've been able to measure a TINY TINY TINY pocket of fluid within its sac. (Very tiny, doctors say it's completely statistically not meaningful, but I choose to believe that anything's possible







:.)

Bad news: Twin A still has VIRTUALLY NO amniotic fluid. Its AFI (amniotic fluid index) is 0.7 cm. Anything below 5.0 cm. is considered to be extremely low and is diagnosed as "oligohydramniotic" meaning very low fluid. The doctors have told me that the baby has virtually NO chance of long-term survival, and believe that the baby will eventually die in utero (probably from cord compression since the cord will have no fluid to float around in).







If the baby does not die in utero, they say that the baby will have NO chance of survival after birth because its lungs will not mature or develop at all.








They tell me there is absolutely no treatment for this condition when it happens this early, and even if they did do an "amnioinfusion" (when the inject saline into a sac that has ruptured) that wouldn't help the lungs develop because that wouldn't be true amniotic fluid, and worse it would probably put Baby B (the other twin) at MAJOR RISK. They will not do this procedure because they are 100% certain that it will not be effective and will cause more harm than good.

So the bottom line about Twin A is that, although my husband and I are hoping and praying for a miracle, the medical reality is that this baby will likely be stillborn or die at birth.







This breaks my heart to think about, especially when I see the little guy/girl fighting each week for his/her life. Seeing them weekly has been wonderful in so many ways and such a blessing, because it allows me to love them in such a special way so early on...but also makes me feel so bonded to these little people trying so hard to survive and there's nothing I can do to save tiny Twin A.









If only love was enough...









I _did_ let my doctor know about my husband's story, just so he understood that medical predictions aren't always the "end all, be all". (For those who don't know, my husband was in an accident just over a year ago where he was thrown from a lift and fell 40 feet to the ground and landed directly on his head, breaking his neck and causing a massive brain injury, complete with an inoperable brain bleed and several large hemotomas on his brain. His heart was not beating and he was not breathing on impact, and wasn't expected to survive the trip to the hospital, let alone ever recover. After months in a coma and many many many months in the hospital, he is now 100% back to normal...no paralysis (despite a broken neck), NO long-term brain damage (despite 85-90% of his brain matter being dead), nothing...he is considered a "medical mystery". Our doctor was, needless to say, amazed by the story, and agreed that you can NEVER say never in medicine.

So...Nick (hubby) and I are just praying that this tiny little baby we call "Twin A" is our own little medical mystery as well.







:

Either way, I'm so grateful for a chance to love this little person. I am trying to focus on how much I love him/her







and not on the fact that I very likely am going to lose him/her soon.









*Update on Twin B*

Good news: Twin B is alive, kicking, healthy, and active!!










































He/she measures a little bit smaller than Baby A, but still within normal limits. Heartbeat is great, baby moving around well...and best of all, he/she has plenty of amniotic fluid!









Not-so-great news: Twin B is still very much at risk of death (premature delivery before viability) if I develop an uterine infection from Twin A.

The doctors biggest concern for me at this point is uterine infection. There are a few ways they fear this might happen:

Assuming I have an "open sac" caused by a rupture of Twin A's membranes, there is a very high percentage that I will develop an infection from that at some point. *The good news is that the greatest risk for developing infection after rupture of membranes is within the first few weeks of rupture, which I am beyond!!* However, the risk is always there...continues until delivery.

I say "assuming I have an open sac" because just this week the doctor was reviewing my record and is beginning to question whether I ruptured mebranes at all. I have NO memory of having any water leakage, nothing whatsoever...and the doctor says that no matter that it was relatively early at 11 weeks, I would have felt wetness, water dripping down my leg...something. I know I felt NOTHING. I know it because it was a 5 day window that I am looking at (October 1st baby looked great, good fluid...then on October 6th there was no fluid at all). I know for sure that I never felt anything remotely like what he was describing water breaking would feel like.

So now he's thinking that the lack of fluid might not be due to ruptured membranes but rather due to "poor placental placement" for Baby A.

This makes very little difference for Baby A's prognosis, because either way, Baby A is in very serious danger due to no fluid. *However, assuming I did NOT rupture membranes on Baby A, then Baby B is probably at slightly less risk because I am not as likely to develop an infection from Baby A's open sac.*

ANYWAY...the other cause of uterine infection that they are concerned about is that when (if?) Baby A dies, it is lying directly over my cervix. The doctor has explained that when the baby dies, it will mean that there is non-viable tissue right over my cervix, connected with my vagina, which causes a "breeding ground for bacteria" as he said. The fact that Twin A is right over my cervix makes it more dangerous, evidently...if it were elsewhere in my uterus, it would probably cause less risk of infection, but being right over my cervix increases the chance of infection. That risk will be elevated for a few weeks after Baby A dies, at which point they hope Baby B will push Baby A (dead) out of the way and thus, risk of infection reduces again. This is all, of course, assuming that I don't get an infection in the meantime and go into labor very prematurely.

UGH. (Anyone see why I get exhausted explaining what's going on?







)

Finally, last piece of good news is that the blood clots are not growing, so while they are still of concern, they aren't a HUGE concern at this point, so the doctor says.

Whew. That was tiring. Anyone still with me?









So basically, we are still in a waiting game. It is terrifying and so so sad to think about daily, so I am trying not to...I am trying to focus, like some wise women here have advised me to do, on the POSITIVES.

*I am pregnant with twins today.







I love my babies more than I can even describe.







*

All of the other stuff...well...unfortunately, it's out of my hands. I would do anything...LITERALLY ANYTHING...to save these little guys. But nothing I can do will help, except to rest as much as possible, drink fluids, and TRY to think positively.

*SO SORRY FOR THE RIDICULOUSLY LONG UPDATE.* I hope that now that I've updated people, I can come here and post shorter, more manageable updates without feeling overwhelmed with the enormity of the task of explaining things.

I appreciate your thoughts and concern so much. I love MDC.









Claire


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## claireb (Apr 7, 2009)

P.S. Can a moderator move this to "Pregnancy After Birth Loss" section? It's probably more appropriate there? Thanks!


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## ~Charlie's~Angel~ (Mar 17, 2008)

a million times!


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## MovingMomma (Apr 28, 2004)

I'll continue to pray for you & your babies, Claire!


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## Jules09 (Feb 11, 2009)

Thank you for the update, I've been thinking about you and wondering how you're going. I'm hoping so hard for you that your babies keep fighting on.


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## lovebug (Nov 2, 2004)

i could not read and not post!

a thousand







s to you!!!! what an ordeal. despite all the negative your situation is faced with i am AMAZED and you glass half FULL approach!!!

maybe love is all you need? keep your hopes up mama its not over till its over


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## ecstaticmama24 (Sep 20, 2006)

Wow Claire, you have been on quite the rollercoaster ride. . I am happy that you are maintaining hope for little one A. You've been in my thoughts, thank you for the update. And don't worry about taking so long AT ALL, seriously, we all need a break sometimes.
























Still sending positive thoughts your way.


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## sew_crafty_girl (May 15, 2009)

Wow Clare. What an ordeal you're going through.


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## Vermillion (Mar 12, 2005)

You and your peanuts continue to be in my thoughts, Claire. I'm praying like crazy for a miracle for you and your babies. You are absolutely right, never say never!! There is always hope, so I'm holding on to that for you









Take good care of yourself and know that you and your babies have lots of good energy being sent your way~


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## KeyToMamasHeart (May 1, 2009)

i'm blown away, your strength is amazing and YOU are amazing! thank you for updating as i know all of us mamas are thinking about you all the time
i'm hoping and praying for you and your little ones!!!


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## enigo (Mar 11, 2009)

:


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## Peacemamalove (Jun 7, 2006)

s mama and many many many many more







s!!!!! You are truly amazing and strong!


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## Juvysen (Apr 25, 2007)

Wow! What an AMAZING story.

Still thinking of you and hoping for a miracle for your twin A, and a safe delivery for twin B!


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## Evenstar1025 (Oct 15, 2009)

I will be praying so much for you and your twins!







I may not be the "name it and claim it" kind of person but I am going to be believing with you and your dh that your children will both be born extremely healthy!

God has done such great miracles and I have to believe that His plans are best for us. I believe it... I will be praying for you!


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## Fireflyforever (May 28, 2008)

Claire ... abiding and hoping with you. Sending lots of positive love and light to both twinnies. (((((HUGS)))))


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## NWmt_mama (Jul 22, 2005)

wow, you are an amazing woman!!


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## Kathryn (Oct 19, 2004)

Claire, I don't know if it would help at all for you, but this blog is of a woman who was carrying twins, had an amino which broke one of the twins sac's. If you go back to her 2005 archives, you can read the whole story.
http://lizmccarthy.blogspot.com


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## Milk8shake (Aug 6, 2009)

Clare I have been thinking of you and your bubs. Thanks for taking the time to update us all. Prayers and best wishes to your little fighters.


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## ShineliketheSon (Aug 20, 2008)

for your twins!


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## ladyjools (May 25, 2009)

you are in my thoughts a lot
was good to hear an update and to know that for now both babies are alive
i really hope things turn out ok for you,

Jools


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## MI_Dawn (Jun 30, 2005)

OMGosh I didn't know about your husband! I nearly lost mine, too (flesh-eating bacteria from an infected tooth... they said it was 1/4 inch from his carotid artery and didn't know how he survived... miracles!)

I'm praying for an amazing medical mystery miracle for you, Claire!!


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## mrsbabycakes (Sep 28, 2008)

Claire!

I'm so happy to hear that you're stable and hanging in there. We're 15 weeks today! Terribly good, I say. Only 8-9 more weeks to viability.


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## jess_paez (Jul 5, 2008)

they're still holding on







i am thinking ONLY great thoughts for you, i am amazed at you and your hubbys strength ........yay for medical miracles!!


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## expatmommy (Nov 7, 2006)

Thank you for the super long update. We've all be waiting to know how you and your sweet babes are doing.

Praying for a miracle & for hope.


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## moonInLion (Mar 1, 2009)

Thank you for your update! Hoping for a miracle for you. I admire your strength.


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## sailorjenn (Jul 19, 2007)

Praying for you and your tiny twins!


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## colorclash (Jul 14, 2009)

I'm happy for your good news!


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## calmom (Aug 11, 2002)

Oh my goodness, Claire. That's a lot of info to soak up. I will continue praying for you and those little babies, your whole family! I remember you telling me about your hubby months ago when I thought I couldn't hold on any longer. You helped me so much by sharing that with me! Hoping and praying for another miracle for you, my friend!!!!!!!


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## maranapanda (Jun 10, 2006)

blessings to you and your family. My heart wishes I could carry some of this worry for you. You are a brave and loving mama. Thank you for taking the time to share your story.

much love
Amanda


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## Tear78 (Nov 28, 2008)

Claire, thank you for updating us. You are an amazing woman, and I have so much faith in the power of your positive thinking. I'm







for you little babies and thinking about you often.


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## 2boyzmama (Jun 4, 2007)

Claire-I've been lurking and following your story, I wanted to come out of lurking to tell you about my cousin. She was pregnant with fraternal twins and her 20 week ultrasound showed some abnormalities with Twin A. She was referred to a specialist and another ultrasound done, Twin A had spina bifida up between her shoulder blades, her body had not developed past that level, she had arms but no hands, was missing numerous internal organs, had no legs. Twin A had no chance of survival.

The mom was in a horrible predicament...it was likely that Twin A would die in utero, and if her body expelled that baby, she would lose Twin B as well. Or if she retained the baby and developed an infection, she could lose Twin B. She was given another option of selective termination. I don't know many details here, I'm sorry, but there was a technique of termination that would decrease her chances of her body expelling the baby, a majority of the baby was reabsorbed somehow. I'm sorry to mention termination, I would normally never consider it as an option, but somehow in this case they were able to do it in a way that greatly increased the chances of Twin B's survival.

Twin B did survive, she was born by cesarean at 36 weeks and is a healthy 2 year old today.

I wonder if such an option could be available to you in the event that Twin A dies in-utero?? I'm sorry to be so lacking in details, as you can imagine, it was a very difficult time.

I'm praying for your babies!!! And for you and your husband...strength to you beautiful mama!!


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## MommaSomeday (Nov 29, 2006)

Thank you for posting an update, Claire. i can imagine how difficult it is to constantly explain it, and I appreciate you taking the time to tell us what's going on. I'm glad that Twin A is still doing okay, and am hoping right along with you and everyone here that he/she makes it through okay. I am also thinking about Twin B and glad to hear he/she is doing so well. You have an amazing amount of courage. I will be thinking of you and your husband constantly. Keep us updated as you can, but please don't let us put any extra pressure on you. Take care of yourself. *hugs*


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## crazyrunningmama (Dec 16, 2006)

Please, please, for heavens sake do NOT worry for even a moment about hurting our feelings. You must take care of yourself and your emotional well-being however you can. I love to read your updates, but when you don't post, it's because you can't or it's not the best thing for you and I think we all understand that.
















and much love to you and your babies.


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## bc1995 (Mar 22, 2004)

Wow, Claire!! Thanks so much for the update. Keeping you and your sweet babies in my thoughts and prayers.


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## SeekingSerenity (Aug 6, 2006)

My goodness, Claire, you have SO much on your plate. I have been following your story as well, and thinking of you every day. YOU are an amazing, strong, supremely loving woman, and your DH is also absolutely astounding, having survived all he did. Together, this has obviously been passed on to Twin A, who despite every single negative factor is STILL hanging on, growing, and being loved. This has been such a tumultuous pregnancy for you, to say the least... and somehow, your spirit of love, acceptance and determination still shines through.

You are an inspiration, and your DH as well. Those babies are SO LOVED and you must know they feel it.

Thank you for the update... I will continue to hope and pray for you, and light candles for your sweet babes, as well as strength and peace for your heart and your DH's too.








s times a million.... hang in there, babies....


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## SusanMy (Apr 17, 2008)

Claire,

You, your babies (and your husband!!) are amazing and inspiring. I can't imagine the emotional highs and lows you must be going through, but I do know that you are a very, very brave woman and I very much admire your determination to stay positive for yourself and your babies. I'm thinking of and praying for all of you. Thanks for sharing your story. I hope with all my heart for the best possible outcome for your family.


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## AngeliqueW (Jan 28, 2009)

Sending positive energy to you. Hope abides.


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## Carlyle (Mar 31, 2007)

I'll be thinking of you and your family too. I hope that things work out well


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## SimplyRochelle (Feb 21, 2007)

I can definitely see why it's exhausting to have to explain that a million times a week. Hoping you continue to beat the odds.


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## Manessa (Feb 24, 2003)

Thanks for the update. I've been thinking about you and your babies a lot. It's nice to know what's going on. You are in my thoughts.


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## Amy&4girls (Oct 30, 2006)

You've been in my thoughts. I am praying for your and your precious little ones.


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