We are still alive!

I've been busy and mainly using phone as computer outside of the office, so I really haven't updated.  A couple of you who are commenters/readers have found me on Facebook or emailed me (see right bar) and had me find you on Facebook and that is actually probably the best bet for right now since I don't know when I'll get back to updating in a timely fashion...

I'm sure there are lots of cute pictures and interesting anecdotes in the last three months, but it seems likey I'll never really update them.

Brief updates:

Trajan started kindergarten at the end of August at our local neighorhood school.  He has a great teacher that it turned out we already know as her son was in Chiron's infant class.  He's had some behavioral issues and adjustments, but is doing really well academically.  He has been the most amazing brother that I can conceive of.  The devotion and love he shows his siblings is absolutely amazing.  It is definitely worth getting myself to take the time to come here and write a real post to document some of it so that I never forget how he has been with all of them. 

Poppins quit, by text, when the girls were a couple weeks old for reasons relating to her being pregnant, Medicare, WIC and other factors that aren't worth my time to bring up.  We were trying to find a quick nanny from an agency, but my mother volunteered to stay with the girls for August and September rather than have us leave newborns with someone that we wouldn't have the time to really vet.  That was great and really awesome for them.   Chiron started back at the daycare he was at before on August 1 and the girls joined him at the start of October.  Seems to be going pretty well.

Chiron is really blossoming into himself and starting to communicate with more words in the last few months.  His brother is still his favorite person in the world and it is really cool watching Chiron imitate Trajan (well, at least in most things).  Yesterday, I was running late and so I had Paul go pick up Trajan and I just went and got the littles.  Normally I pick up Trajan first and he helps me pick them up including rocking and kissing each sister as we put our shoes back on in the front room.  Chiron did this yesterday, I guess becuase Trajan wasn't there! 

The girls are doing well.  At the beginning of September, we got Ari in for a swallow study after the gastroenterologist agreed with me that something wasn't right about how she swallows and we found that she was aspirating with each swallow.  So she is on thickened expressed milk and should be in speech therapy, but getting all the ducks in a row with the hospital has been insane.  The GI nurse says that I should hear with her first appointment by Thursday at the latest, but since we have been working at this for a month, I'll believe it when I hear it.  Allie is following in the boys fine footsteps with extremely severe reflux, but so far no indicators of either milk soy protein intolerance or congenital lactase deficiency.

I was talking to a friend earlier today and realized how much has happened in such a short period of time.  Two years ago today, I was almost 20 weeks pregnant with Chiron and Aurelia with no idea of any problems on the horizon.  Since then, either Chiron or I has been in the hospital for six months and three children have been added to our family.

I still think of Aurelia often.  She is real to me even though she isn't to the rest of the world.  I held her in my arms, she was formed and perfect and complete.  She may have never breathed a breath, but she still was to me.  I don't know if it should matter when she died, but it does for some reason in my head.  She was very potentially viable had she been born instead of died on November 11, 2011.

That said, I think I've come much more to terms with her life and death.  I can mention her without sounding as awkward and don't avoid her when her inclusion makes an answer stronger or better.  I have had some odd thoughts relating to her and the girls.  They look so much alike that it leaves my wondering more of how she would have looked.  You may have noticed that all of their names start with an A.  Aletheia was actually the second name we had identified before we knew Chiron and Aurelia's genders and after a lot of discussion and research, I came back to it this time.  At that point Paul suggested that we make both of their names start with an A.  So all three girls are A's, and I like this.  I still mourn not getting to use and hear Aurelia's name though independently of mourning her, as odd as that may sound.

I've come to the conclusion that you should never make a comment on someone's gravid status, their children's spacing or their genders.  Because I can not count the number of times someone has volunteered that our family is perfect since we have two boys and two girls.

Paul is doing well.  He's always been good, but having the two littles has really resulted in him stepping up to amazing.  He gets the girls down each night while I put the boys down and actually takes and drops off all three littles at daycare on his own.  And he keeps us all fed in addition to all the normal household tasks of laundry, dishes and cleaning.  I've been overwhelmed a couple times by the situation in which I find myself that is my life, but he's plugged through like a pro this whole time.  I'm lucky and blessed and should probably remember to tell him that more often.  And to find the time to just sit and listen and talk instead of feeling like I always need to be running and doing.

Thank you all for caring about me and my whole family.  Here's a couple random shots:

Very random assortment, but I figure I'm unlikely to ever go fill in unless I get smart and use my Facebook to provide structure, so here's for now!

Oh, and I figure since so much of my life is filled with breastmilk that I should add something here.  Ari went up to the NICU for apnea which was probably related to her swallowing disorder, so she had a slower start to breast feeding, but I had both of them feeding pretty well as long as I tandemed at the time Ari was moved to the thickened milk.  Now all of her milk has to be expressed so it can be thickened.  And these girls drink a ton.  I was having to thaw some for a bit a couple weeks ago, but I think I'm back to keeping up with them.  Since Allie direct feeds in the evenings and nights, it's hard to know exactly how much they are going through, but it is dang close to two liters a day if it's not over. Part of my stress came because I gave away the vast majority of our freezer stash early on because until Ari stopped direct feeding I was staying well ahead of them.  But things are looking alright now.

And I lost it...

So, I've held it together very well.  Hell, I'm not even sure I'd say I've been holding it together, because it's been pretty easy.  I'm rational.  I understand things happen.  And that doesn't mean it will happen again.  So, I've been very fine.  I've taken to thinking of these two as going to be here at some point.  I've entertained the idea that it will be via the NICU possibly, but really expecting them by 37-40 weeks as a part of our day-to-day life.



Then I lost it.



I don't know if it's being at the same gestational age or realizing that I'm going to have to go for the longest stretch in the history of this entire pregnancy without an ultrasound or the preterm labor nurse upsetting me, but I've lost it.  It was definitely the preterm labor nurse as the trigger, but I don't want to put it all on her.



How do I know I lost it?  I called my OB's nurse this morning to confirm that something the preterm labor nurse said I didn't need to worry about and I ended up where I could barely (if that) talk because I was crying and just had lost control.  I'm sitting here typing with tears running down my face.  Thus, I say I've lost it.



To backtrack: yesterday I had an appointment with the preterm labor nurse and then an OB appointment.  The preterm labor appointment was in the morning and went great in terms of the babies and my status as a pregnant person.  Both had good heartbeats.  Blood pressure was good.  Cervix is long and closed, yeah!  OB appointment also went well with both looking good on the quickie ultrasound and she also checked out my cervix and agreed it looked great.  Four cervical checks in 88 hours, I declare my cervix to be pageant queen popular.  Everything medical and related to this pregnancy at both appointments could not have been improved upon.



So, why the crazy?  Well, the preterm nurse took me back to last time.  I had an appointment with the perinatologist and her scheduled for a Thursday, but after feeling jumangi drums and just so much absurd amounts of motion that it distressed me, they had me come in Wednesday to check them out.  They did the 24 week anatomy growth scan (24 weeks would be Friday) and everything looked great.  Viable and perfect were words used.  Yeah, ain't that almost funny?



She brought up this appointment and what I had felt and brought up that this was likely Aurelia doing her best to try to get oxygen.  The nurse even said to communicate "hey mom, I'm not getting air."  Yup, said that to me. 



Yeah, that's a kick in the ass.  But you know what, there's nothing we could have done differently.  There's nothing we could have done to help her.  And if I'm being completely honest, the outcome of two 24&0 weekers one of whom has been experiencing oxygen deprivation likely would not have been a better outcome than where we have ended up.  But still, having someone say that yes, that meant something was wrong and I was the only one capable of getting the message makes me sick.  And now I'm supposed to be watching for fetal thrashing?



I meant to ask the OB about it yesterday and we got to the point of saying that the preterm labor nurse had upset me (though I kept it completely together with her oddly), but got distracted and never got into why.  Go attention deficit.



Also, the OB had convinced me early on this pregnancy that we weren't certain this was a cord accident.  And this I think helped with my piece, because cord accidents are one of the causes of stillbirth that has recurrence where many stillbirth causes are flukes.  So, now I'm back to that worry about the recurrence rate. 



Oddly, I just realized that I never changed the little summary box of "our world" that's in the border of the blog page to not say cord accident when the OB convinced me that the neonatal nurse practitioner told me it as a certain cause to make me feel better, but they couldn't be certain.  I will say that cord compressions definitely fit well with the symptoms and the experience of her motion.



And I'm feeling much better post this rant/ramble and a conversation with my OB's nurse, who is an amazingly patient and kind soul, this morning. 



I have the 24 week anatomy/growth scan with these two on Monday and then I will see the preterm lady again.  And then I enter my new distress as the OB set my next appointment for four weeks and the perinatologist will set my next appointment for four weeks, so I will have to go almost four weeks without seeing them on an ultrasound when I haven't gone even two weeks so far this pregnancy.  The preterm labor clinic will do the Doppler, but even she has said that she's not 100% certain she's identifying them separately.  It may seem odd, but the idea of possibly not knowing one is dead for weeks is almost more upsetting than the idea of one being dead.  So, I anticipate some basketcaseness for the next four weeks.



I'm not ok, but I'll make it.

Afterthought: I am very lucky that I'm signed up to work pizza Friday at Trajan's school today. Two hours of serving up pizza and fruit and talking and playing with three lunches of kids and the world is always a better place. I'm still convinced I'm pretty blessed and lucky, even if I'm a bit crazy today.

Catastrophic

I don’t like the word catastrophic.

The appointment where the demise was found was different from any other I had ever had. My doctor was on maternity leave, so I was seeing a different doctor in the office. For the first time ever. Paul did not come with me. For the first time ever. Because I was seeing the different doctor, I was taken back through a different door and even to a different bathroom for the traditional urinary sample.

I am glad, because my associations are not with anything that is normal.

The doctor who was covering also had a resident working with her, another event I’d never experienced before. The resident came in first and tried to find my fundus, gossiped about her twins and was surprised and complimentary about my still having the ability to curl up to sitting from lying down on my own. There was something odd about her. I honestly can’t remember exactly what it was. I think it was that she had blue hair. It may have been blond hair with blue streaks, but I really think the odd thing revolved around blue hair. This seems highly improbable, but that’s what my memory has settled on.

The covering doctor came in and was chatting. She asked which flavor of the glucose drink I wanted to take home. Lemon-lime. That was my choice, I can remember that.

She honestly seemed like she was already moving on and essentially done by the time she started the ultrasound. They did this every visit to check the heartbeats.

She asked if we knew their genders. I said yes.

She started with “A” but made some dissatisfied type noises. Because of the gender comment, I at first thought these noises were because she couldn’t see the genitalia. I made some flip comment about misbehaving. She moved on to “B” saying something to the effect of “we’ll do this one first then and come back.” Everything was good with “B” and then she moved back to “A”. Having just seen “B”, I now immediately knew what was wrong. I didn’t believe myself, but I knew what was wrong.

There was no heartbeat.

I didn’t say anything. I just laid there and watched as she continued to hunt in silent desperation. I watched as the only motion came from the reaction following the action of “B’s” motion. I watched as there was no beating. Then she said the words. “I’m afraid something catastrophic seems to have happened.” I think she might have prefaced this with an “I’m sorry” or something to that effect, but it was the word catastrophic that I heard. It was the word catastrophic that confirmed to me that I was correct and Aurelia was dead. Until I heard that word, I really thought in my head that I was being an alarmist over-reacting freak crediting herself with more medical knowledge than she actually had. Nope, I am qualified to see still versus not.

I still hear the word catastrophic in my head sometimes, but it’s no longer a word that I chose to use.

Catastrophic.

An event resulting in great loss and misfortune
A state of extreme, usually irremediable, ruin and misfortune

It was the right word.

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.

Dead Baby Blogs

I probably need to go back in and fill in the details, but that's not what I'm thinking of tonight. I wrote a pretty good story of what happened the first night in the hospital and I'll probably process updating that at some point, but not tonight.

Tonight what is on my mind is the phrase "dead baby blogs". It's something I came across occasionally in reading blogs, never really thought about, but apparently was aware enough that it pops into my head. However, I don't think I could write one. It's not that she wasn't real, but she never completely was. I don't know what I'm trying to communicate there. I know I prefer to only refer to her as she. Use her proper name, Aurelia, instead of pronouns raises my stress level dramatically. Maybe part of the reason why I feel I can't focus on the loss aspect is that her little brother is still trucking along, galloping like a good centaur. Maybe part of it is because I am hoping to carry her dead body inside me for up to three months. Maybe part of it is knowing I am not supposed to be stressed for Chiron's sake. I can not do anything more for Aurelia. Period. There is nothing. Thus the decisions seem easy to me.

I'm not heartless, it's not that I don't care. I only knew her from ultrasounds, yet there were guesses as to her temperament, primarily centered around her interactions, to dub them politely, with her brother. She was the older one in our earliest ultrasound and now she will forever be Chiron's big sister, it's just we will never get to know her.

I don't know why I'm writing this, but these are the thoughts for the night. Just because you never fully were doesn't mean we didn't love you and don't miss you.

I hate umbilical cords on some level. Uterine replicator for safety please.

It all changed

This is something I wrote on my iphone keyboard while lying in a labor and delivery room during my last few hours of mag.

I find myself not fitting into any category. Can't really neatly fit the experience into blanks.

I had a normal growth scan and preterm labor session scheduled at the perinatologist for Thursday, November 11. I had some contractions Tuesday night and so they moved both up to Wednesday just to check what was going on. 24 week growth scan on both babies was great with good movement, size, blood flow and all of that. They also did my first cervix length ultrasound and the praise couldn't have been stronger, 4.38 centimeters.

Since I had just had the ultrasound, I didn't have a manual cervix exam for my preterm labor appointment. Just said I was doing well and discussed a work project that might be causing stress ad was encouraged to just relax about it. She said that my reduced and split work schedule with doing a fair bit from home was looking excellent and to keep it up. I was showing no indicators of any preterm labor risks or anything like that. Blood pressure and urine great. The week before I had had a manual exam and my cervix was fully closed with even the "exterior" kind of closed which is really impressive in someone with an older child apparently.

Unfortunately, I really feel like I had a mentality shift after this appointment. They were both described as great and viable and all of that and I'd received such overwhelming praise of my cervix. Since preterm labor was really the only concern that was on my radar at this point, I really felt much more like they were real. I'd had trouble getting my mind around the concept of "there's two of them", but I was finally definitely there.

Friday morning was a school holiday for our three-year-old. We'd decided he would go to a drop-in day care place that he loves for part of the day at least since we were trying to be conservative on hours for work and the Thanksgiving holiday was coming up anyway. Problem: appointment with the OB was at 8:15 in central Austin and the center opens at 8:00 in north Austin. We had just had the appointment on Wednesday, so for the first time ever, I went off to the OB by myself. Even stopped and got a rooibos latte to drink after the appointment since they come so hot and these appointments are so quick. Left it in the car and have not seen it again.

My doctor, Dr. Nash, had had a baby about two weeks before and so I was seeing a "random" doctor. The resident studying with random doctor came in and we chatted and she took fundal height and blood pressure and complimented the fact that I could still sit up on my own. Then Dr. Weihs, I think that was her name, came in and started giving me the gestational diabetes test stuff and then was wrapping up with a quick ultrasound to get heartbeats. Didn't get one on A, but said something to the effect of will try the easier one first and went and got our boy's heartbeat. Then she spent ten excruciating minutes watching our girl not finding a heartbeat. Then she stated that she believed something catastrophic had happened, but she wanted me to go to the perinatoogist for confirmation.

I was by myself in the "wrong" side of the office with doctors and staff I did not know. Bless Dr. Weihs, she had the brilliant idea to get "my" nurse over from the other side. Not only that, but Rachael, my normal doctor's nurse knew that I was not really ok despite my control, and abandoned everything to drive me to the perinatologist where she stayed not just until my husband could make it, but until we were done. And she had a doctor's appointment of her own this made her late to.

Met the third peri of the office for the first time and he concurred that she had suffered a fetal demise. He said he couldn't see any cause for why this would be and that he'd looked through the report from two days before and everything still looked the same except she was no longer living. The OB had sounded pretty concerned about preterm labor or otherwise losing our son as well, but the peri sounded much more promising. We left very emotionally uncertain.

That night, I felt good physically. I described myself as aware of my uterus, but not contracting. I did well emotionally across the afternoon, but lost it a bit that night. I knew I was supposed to avoid stress for the sake of Chriron, our boy, but this made processing the loss of Aurelia much harder.

By ten Saturday morning, I was having regular cramping feelings. Talked to Rachael a couple a couple times and she had me come in, even if it was just for my sanity. They found I was having contraction as well as being dilated to one centimeter, so they immediately gave me a first steroid shot and started me on a 48-hour initial course of magnesium sulfate. Saw both the on-call OB and the on-call peri, who was the same one we had seen the day before. They talked through the possibilities of keeping both in, that they would try to stop labor more after I did deliver Aurelia if I did since she is the presenting baby and what would happen if we delivered both.

Chiron was placed on continuous monitoring and they left the sound on his machine to help soothe us. That gallop really helped through the first few hours or so when I went from sort-of contracting to full contractions about every four minutes. This was several hours in the mag and nurses stated talking up the try to deliver one plan more. They sent a neonatologist down to talk to us about generalities and DNR orders. Then things calmed down. Not sure how or why and haven't seen any doctor since then, but I know this can be nothing but good. I'm not trying to see anything more into it than buying Chiron a better chance of getting his full 48 hours of steroid treatment, but do hope we talk to an ob or peri in the morning.

I am still having at least three contractions an hour based on the monitors, but even fewer that are noticeable. No one has asked me about pain meds in hours and I again view this as a sign in the right direction!  I'm definitely not trying to lose myself to optimism, since I'm pretty fact based, but seeing the good helps. I know I'm on a mag drip, but I'm hoping for the little guy. I do experience significantly increased uterine irritability if I go over about an hour to pee, but doing that is helping and is completely doable.

My eyes are having real trouble focusing because of the mag, so sorry for typos and wrong word choices.

Right now, my goal is making it to shift change. Shift change equals having made it through another 12 hours. Shift change equals one whole half a day's growth. Shift change in this case equals morning and people awake and food trays even if they are just liquids. They've only talked me through Monday midday, so I don't know what will come, but all I know is I will do what I can and know I can do nothing else.