It's been 39 days since we thought I was going to deliver a 24-weeker, 40 days since we found out we had lost a 24-weeker the day before. It still is an odd situation, but I feel like the focus on the living has to take over. Not that I want to discount the loss of try to gloss over it, but the 39 days that we have kept Chiron out of the NICU somehow is feeling more significant and with each passing day I expect this to get more so.
37 of those days have been in-patient bedrest and included fun with preterm labor, BRB [yes, they have an acronym for bright red bleeding], magnesium sulfate, contractions and more, but it's really been surprisingly easy. It's the "new normal". Do what needs to be done.
Another 39 days and we would be 35 weeks. Not trying to put the cart in front of the horse, but I'm cautiously optimistic.
Tuesday, December 21, 2010
Sunday, December 19, 2010
My iPhone is sentient
Was having some trouble tonight where the answer to "what's wrong" was "nothing more or less than the universe." I know I do not have the luxury to stay in this state, stress makes contractions worse and can push me back over the line to preterm labor, so I decided to turn on the iPod on phone as something different than what I've been doing in the five weeks I've been here.
The answer from the iPod was Lifehouse's Broken. http://www.azlyrics.com/lyrics/lifehouse/broken.html
Thank you sentient iPhone. Bonus that makes it even more perfect: up until two days ago when I had one of the nurses change the battery, my wall clock was losing two minutes a day...
The answer from the iPod was Lifehouse's Broken. http://www.azlyrics.com/lyrics/lifehouse/broken.html
Thank you sentient iPhone. Bonus that makes it even more perfect: up until two days ago when I had one of the nurses change the battery, my wall clock was losing two minutes a day...
Where is the line of a sibling?
In my mind, Trajan still has two siblings. But, where is the line? While I think I would acknowledge a miscarriage, they would have a different category in my mind than siblings I think. I don't know if it would be because we didn't know gender or because they were early enough to not have to be delivered or because a death certificate was not needed or what.
Random thought one: needing a death certificate when there will never be a birth certificate.
Random thought number two: I am still much better at "he and she" or "A and B". I don't do names. I know I should, but I don't.
I think part of what helps to make it perfectly clear to me that they had a sibling is these two shared a womb. Wombmates used to be one of the jokes that amused me. Chiron remains a twin on all the hospital forms rather than a singleton. It's just he's our single twin. At the beginning of this pregnancy, I commented that I'd never really thought of the word singleton. Before all "this" happened, I'd never thought of a single twin.
I don't know what the point of this is. I was just thinking about the info sheet they have you fill out in the obstetricians which is number of pregnancies, number of life births, number of still births etc. and it now makes more sense why they have to have each explicit category.
I do think Aurelia is their sister, but I imagine my answer to the question in passing, rather than detailed conversation, of how many children we have will be two. Sometimes it's easier to take the slight pang in the heart than to open up the guard on it all.
Random thought one: needing a death certificate when there will never be a birth certificate.
Random thought number two: I am still much better at "he and she" or "A and B". I don't do names. I know I should, but I don't.
I think part of what helps to make it perfectly clear to me that they had a sibling is these two shared a womb. Wombmates used to be one of the jokes that amused me. Chiron remains a twin on all the hospital forms rather than a singleton. It's just he's our single twin. At the beginning of this pregnancy, I commented that I'd never really thought of the word singleton. Before all "this" happened, I'd never thought of a single twin.
I don't know what the point of this is. I was just thinking about the info sheet they have you fill out in the obstetricians which is number of pregnancies, number of life births, number of still births etc. and it now makes more sense why they have to have each explicit category.
I do think Aurelia is their sister, but I imagine my answer to the question in passing, rather than detailed conversation, of how many children we have will be two. Sometimes it's easier to take the slight pang in the heart than to open up the guard on it all.
Friday, December 10, 2010
Optimism
Feeling rather optimistic. Should be careful with that, but it definitely is a nice feeling.
Thursday, December 9, 2010
Brief Positives!
Well, had an ultrasound and all was as good as could be and in one case better than we would have expected! Chiron is a healthy 1.2 kilograms of baby (2.64 pounds of 2 pounds, 10 ounces) with the right amount of fluid and excellent cardiac activity. He looks great! And I have continued with GAINING cervix. Yes, I never thought I'd find a cervix so interesting, but I do. Dilation is closing down and cervix is now up to around 3.7 centimeters. This is huge for those of you who haven't also developed an obsession with cervices (p.s. is that the correct pluralization?).
Said do need to stick with strictest bedrest and that does most likely mean to stay in the hospital, but deferring that decision until Monday when MY doctor is back. Wahahahaha.
Flying high right now ;-)
Said do need to stick with strictest bedrest and that does most likely mean to stay in the hospital, but deferring that decision until Monday when MY doctor is back. Wahahahaha.
Flying high right now ;-)
Hostile Intrauterine Environment
I'm supposed to be on a google ban, but took a break from it just to read a literature review to give myself some context. Thought this phrased it well: we are balancing the risks of a hostile intrauterine environment to the risks of prematurity. I have known friends who had incompetent cervix and I always hated the name because of incompetent. I think I may feel the same about hostile. I'd be better with compromised or something like that... Hostile sounds intentional.
And now I've got a work project in, so I can happily be distracted! I am so thankful for internet, VPN, printers and work that can be managed with a little flexibility from all involved remotely. I am pretty sure I'd go crazy if I was here with nothing to do!
And now I've got a work project in, so I can happily be distracted! I am so thankful for internet, VPN, printers and work that can be managed with a little flexibility from all involved remotely. I am pretty sure I'd go crazy if I was here with nothing to do!
That's not me!
Ok, I'm betting any doctor can get the patients confused, but the doctor covering keeps saying things that are the exact OPPOSITE of what is true and it's making me nervous. 1. she said they were going to stop my saline lock because I had bad veins. Nope, I'm an easy stick. Multiple nurses have commented that it's nice that I have such good veins. Plebotomists (how does one spell that) at the blood centers love me. They got all four sticks for the three-hour glucose tolerance test in the same arm with fast, easy sticks. So, that's not me. 2. I'm anemic, but she said she was going to stick with the once-a-day iron instead of three-a-day like we'd been doing because I got too constipated. Nope. Not a problem. 3. She said that cephalosporins are not a beta-lactam. I gave on that one, but she said my assignment was to look it up and yes it is as the other doctor had said. 4. I did not have a cesarean section with Trajan. 5. My gallbladder is fine.
Arggggghhhhhhhh
Arggggghhhhhhhh
The plan...
I keep getting asked by people, including the nurses, "what is the plan?"
Frankly, I don't know. I knew what the plan was at 24 weeks when the delivery of Aurelia and most likely both of them was imminent. I don't really know the plan now that we are at 28 weeks and stable. I know it is still a balancing game of risks: balancing between the risks to Chiron in his current environment and of being delivered premature, the risk to my body of keeping them in versus the risk to Chiron of being delivered, the risk of different delivery methods and more.
My best understanding? As long as I continue to pass my workups to show that I am not developing preeclampsia or DIC and Chiron continues to show great fetal heart patterns on the daily nonstress tests, we will stay in a holding pattern as long as I avoid returning to preterm labor. Originally, the perinatologist had sounded like this would be the case until 32 weeks, but I'm hoping that we are now looking to stay in the holding pattern a few more weeks beyond that. Consider this the all is good part of the plan.
Now, if all is good workup wise but I do go into preterm labor, I believe the plan is to deliver Aurelia, the presenting Twin A, vaginally. They will then cut the cord from her body as close to her as possible, place the cord back up in the uterus leaving the placenta inside and attached and then administer magnesium sulfate and hope that it stops the labor process and that my body even closes up the cervix some. If this works, we will be in another holding pattern, but one that does not have the potential to go as long in all likelihood.
If anything is not good workup wise, I believe the answer is delivery then of both babies. The only solutions for preeclampsia and DIC are the removal of the underlying condition. While I think DIC is technically only due to the intrauterine demise of the cotwin, my understanding is it is such a serious condition that they would go ahead and deliver both twins because of the risk to maternal life is too great.
I think I've come to understand that if anything is going wrong, we are likely to go with a c-section, but there is still the possibility of delivering both vaginally, even possibly days or weeks apart.
What's funny is that even a month ago, having to have a c-section was near the top of my fears lists. Never had a problem with it and was completely on board as medically necessary, but definitely not comfortable. Now it doesn't even hit the radar. And that's with knowing some of the situations make the necessity of an emergency c-section with the older, more dramatic abdominal surgery possible.
I'm trying not to put too much faith and hope into any thought, but my actual OB is back Monday and she is much more comfortable with questions and discussing possibilities even when they don't know the answer than the covering doctor, so I'm hoping I have a better answer for the plan than these current guesses after I talked to her. I know I shouldn't set too much faith in anything changing in my understanding or anything once she's back, but I can't help but feel like it will be a relief to have the doctor that I like, that delivered my son, that communicates in a way that I understand and who puts up with my inanities without even blinking.
Frankly, I don't know. I knew what the plan was at 24 weeks when the delivery of Aurelia and most likely both of them was imminent. I don't really know the plan now that we are at 28 weeks and stable. I know it is still a balancing game of risks: balancing between the risks to Chiron in his current environment and of being delivered premature, the risk to my body of keeping them in versus the risk to Chiron of being delivered, the risk of different delivery methods and more.
My best understanding? As long as I continue to pass my workups to show that I am not developing preeclampsia or DIC and Chiron continues to show great fetal heart patterns on the daily nonstress tests, we will stay in a holding pattern as long as I avoid returning to preterm labor. Originally, the perinatologist had sounded like this would be the case until 32 weeks, but I'm hoping that we are now looking to stay in the holding pattern a few more weeks beyond that. Consider this the all is good part of the plan.
Now, if all is good workup wise but I do go into preterm labor, I believe the plan is to deliver Aurelia, the presenting Twin A, vaginally. They will then cut the cord from her body as close to her as possible, place the cord back up in the uterus leaving the placenta inside and attached and then administer magnesium sulfate and hope that it stops the labor process and that my body even closes up the cervix some. If this works, we will be in another holding pattern, but one that does not have the potential to go as long in all likelihood.
If anything is not good workup wise, I believe the answer is delivery then of both babies. The only solutions for preeclampsia and DIC are the removal of the underlying condition. While I think DIC is technically only due to the intrauterine demise of the cotwin, my understanding is it is such a serious condition that they would go ahead and deliver both twins because of the risk to maternal life is too great.
I think I've come to understand that if anything is going wrong, we are likely to go with a c-section, but there is still the possibility of delivering both vaginally, even possibly days or weeks apart.
What's funny is that even a month ago, having to have a c-section was near the top of my fears lists. Never had a problem with it and was completely on board as medically necessary, but definitely not comfortable. Now it doesn't even hit the radar. And that's with knowing some of the situations make the necessity of an emergency c-section with the older, more dramatic abdominal surgery possible.
I'm trying not to put too much faith and hope into any thought, but my actual OB is back Monday and she is much more comfortable with questions and discussing possibilities even when they don't know the answer than the covering doctor, so I'm hoping I have a better answer for the plan than these current guesses after I talked to her. I know I shouldn't set too much faith in anything changing in my understanding or anything once she's back, but I can't help but feel like it will be a relief to have the doctor that I like, that delivered my son, that communicates in a way that I understand and who puts up with my inanities without even blinking.
Selfishness, balance and ideal?
So, I caught myself thinking positively towards a scenario that I know
I know intellectually that I want the ideal situation. Ideal in this case means not developing a problem coagulating my blood called DIC. I think this means disseminated intravascular coagulation, but in a passing comment with a nurse the nickname of Death is Coming came up and that is not soothing. My levels are still within normal, but they do drop from week to week, so we want to keep this possible condition at bay as long as possible, like into February. Ideal also means keeping both babies in until again, sometime in February.
It is a must riskier proposition to deliver Twin A, Aurelia, and then stop labor. It does help diminish the risk of DIC almost entirely, but it will create an additional potential source of infection. It does seem like everything they do they mention the infection risk, but in this case they would deliver her, put her cord back up inside and then administer magnesium sulfate again, so I can where the clear infection risk would come from because something that had been on the outside would be placed back in the uterus.
So, while I see the advantages of the ideal and intellectually am rooting for it, I do appreciate some of the selfish advantages to the second plan. I think my degree of selfishness is such that I'm definitely not rooting for this course, but if it does happen, I will seem gold in the lining. Note: these advantages are mainly truly selfish. First, the day I deliver her and she officially becomes a stillborn (rather than a stillfetus?) would not be his birthday. Second, it may already be too late, but they said the earlier I delivered her, the more she would look like a small but perfect baby and with the passage of time, the more she will come to resemble more just tissue. Again, this is just selfish. I can no longer help her in any way. In some warped way I view the longer we can hold her in as a last gift to the brother she will never know.
I guess this is just my confession. I know intellectually that Chiron's entire life hangs in the balance and the quality of it is improved by every single day that things remain calm, I avoid preterm labor and I don't develop conditions of DIC or preeclampsia, but sometimes I just want some resolution for Aurelia.
I know intellectually that I want the ideal situation. Ideal in this case means not developing a problem coagulating my blood called DIC. I think this means disseminated intravascular coagulation, but in a passing comment with a nurse the nickname of Death is Coming came up and that is not soothing. My levels are still within normal, but they do drop from week to week, so we want to keep this possible condition at bay as long as possible, like into February. Ideal also means keeping both babies in until again, sometime in February.
It is a must riskier proposition to deliver Twin A, Aurelia, and then stop labor. It does help diminish the risk of DIC almost entirely, but it will create an additional potential source of infection. It does seem like everything they do they mention the infection risk, but in this case they would deliver her, put her cord back up inside and then administer magnesium sulfate again, so I can where the clear infection risk would come from because something that had been on the outside would be placed back in the uterus.
So, while I see the advantages of the ideal and intellectually am rooting for it, I do appreciate some of the selfish advantages to the second plan. I think my degree of selfishness is such that I'm definitely not rooting for this course, but if it does happen, I will seem gold in the lining. Note: these advantages are mainly truly selfish. First, the day I deliver her and she officially becomes a stillborn (rather than a stillfetus?) would not be his birthday. Second, it may already be too late, but they said the earlier I delivered her, the more she would look like a small but perfect baby and with the passage of time, the more she will come to resemble more just tissue. Again, this is just selfish. I can no longer help her in any way. In some warped way I view the longer we can hold her in as a last gift to the brother she will never know.
I guess this is just my confession. I know intellectually that Chiron's entire life hangs in the balance and the quality of it is improved by every single day that things remain calm, I avoid preterm labor and I don't develop conditions of DIC or preeclampsia, but sometimes I just want some resolution for Aurelia.
Wednesday, December 8, 2010
Delay...
Sigh. Other people must have things going on and not find the idea of a cervix length check to be as riveting as I do. Ok, that in itself is a little disturbing. They moved Chiron's growth and my cervix length ultrasounds to tomorrow instead of today. So, don't have any news yet. But as I've told several people, in our situation no news is about the best possible news.
I'm still on the recommended Google ban that Paul proposed four weeks ago. This is good, because even some of the random facts I run across provide enough fodder for my mind. Boys apparently don't do as well in the NICU as girls?!?
I have no idea how to spell ay-yum, but I mean a yoga type sound that in my mind is coupled with pressing fingertips together. Calm, cool, collected and continuing to deal with reality and find the best course available to us.
I've had amazing quantities of work projects today (i.e. I started at 4:30 am and still am working with things) and I'm as always grateful for VPN, internet, printers, and plenty of work to keep my mind from going crazy.
Ramble over. In the words of Trajan, "grow, grow, grow."
I'm still on the recommended Google ban that Paul proposed four weeks ago. This is good, because even some of the random facts I run across provide enough fodder for my mind. Boys apparently don't do as well in the NICU as girls?!?
I have no idea how to spell ay-yum, but I mean a yoga type sound that in my mind is coupled with pressing fingertips together. Calm, cool, collected and continuing to deal with reality and find the best course available to us.
I've had amazing quantities of work projects today (i.e. I started at 4:30 am and still am working with things) and I'm as always grateful for VPN, internet, printers, and plenty of work to keep my mind from going crazy.
Ramble over. In the words of Trajan, "grow, grow, grow."
Tuesday, December 7, 2010
New Normal
It's odd that having no news is such good news. It's a wonderful thing to go a day with no change in status, I think more of less boring the nurses. Such an odd reality to be in, but one that I hope gets drawn out. Tomorrow is an ultrasound both for growth and for cervix length. And then Thursday is officially third trimester. It's been a couple days shy of four weeks since this whole thing started and doesn't seem like it's possible that it's just now third trimester, but that's pregnancy math for you.
I also have to make myself get some more work done for work tonight or tomorrow because I just haven't been able to get my butt in gear. I have a printer in the hospital room along with 4g internet and helpful coworkers and I don't have anything better to do, I just haven't been able to motivate myself. I know from experience that the time goes much faster and better when I do stay on work stuff, so I'll make a concerted effort starting with the post-Trajan visit/dinner time before bed.
I also have to make myself get some more work done for work tonight or tomorrow because I just haven't been able to get my butt in gear. I have a printer in the hospital room along with 4g internet and helpful coworkers and I don't have anything better to do, I just haven't been able to motivate myself. I know from experience that the time goes much faster and better when I do stay on work stuff, so I'll make a concerted effort starting with the post-Trajan visit/dinner time before bed.
Saturday, December 4, 2010
Jury Duty
Oddly, it seems like the minute logistics are more difficult/annoying than the big things. Got a jury summons. Now, I can claim a medical exemption by faxing documentation stating that I have a serious medical condition which would make it difficult or impossible for me to serve, but it still has to be done. I've done the online part of it, but I have to figure out who through the doctor's office does this. I'm thinking that calling Dr. Nash's nurse on Monday is probably the most efficient method since she is talented and helpful and excellent and most good things in the world.
Just argh.
Just argh.
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