Sunday, February 27, 2011

Per Trajan

Heliphones- headphones

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Saturday, February 26, 2011

Thursday, February 24, 2011

After dying, before being born

It is wrong to die and then be born.

More proof that Aurelia apparently is never really far from my mind.  When I saw the title "Relative Size" in the list to the side, I assumed I had written something about the relative size of Chiron and Aurelia at their birth.  We do not have a picture that shows this, as Chiron was whisked away to the arms of those who would help him to continue his battle and thrive while Aurelia was wrapped in a blanket and set to the side to be dealt with when there was a moment.  There remained nothing urgent to be done for her.  Yes, things needed to be done, but the timetable was not critical. 

The difference in attitude towards them at their birth is what came to my mind first, but it's obviously not the real/only explanation for why we wouldn't have a picture of them together.  Honestly, I don't think I could have put newborn Chiron, representing such a battle for life, crying heartily, next to his sister who was not just demised, but had been dead for six weeks. 

But relative size was one of my most poignant reflections after their birth.  Aurelia had been dead for six weeks when they were born and her body was forever trapped in the perfect 24-week state it had been when she died [the perinatologist is the one who brought the word perfect and viable into the picture, the day before she died].  However, her body had been through a lot in that time.  She no longer was producing fluid or had a functioning placenta and so her body was what they called macerated.  As a result, she weighed just 344 grams.  This is in contrast to her 1,402 gram brother.  That time she spent waiting after dying and before being born was the last gift she gave us.

We have six pictures of her.  I held her twice.  In one aspect, my c-section experience was more normal because I did have a baby to hold in the recovery room despite Chiron being in the NICU.  I thought she was perfect.  Even at the time I could recognize that her body had been through the ringer, but there were details such as her mouth that remained perfect.  I looked at the pictures a week or two ago and while I will definitely keep them, I prefer my hormone and surgery addled brain's view of her as perfect.

She’s been actually dead for 15 weeks today and legally dead for 9.  Shouldn’t it be easier? How do you miss someone you never met?

Posting Habits

I'm pretty sure that if I had the habit, I'd contentedly write and update, but since I didn't develop the habit or the skillset during the six weeks I spent on hospital bedrest, it seems unlikely that I will at this time.  I'm pretty sure when I first switched to the mac at home I saw there were some pretty good WYSIWYG type editors where I could just drag pictures in and the like, but I have no idea where they are.  And anyway, I tend to write the little things I have written from my phone or just a browser at work.

Quick thoughts of things I could/should explore:
  • What happened - in particular, how/when Chiron was born and how the 53 days in the NICU went while I can still remember pretty well
  • My thoughts/processing on the Aurelia component of the whole scenario - I still have issues with using her name rather than just "the girl" or "twin A" type language.  Also, reflections on the number of things that make her still come into my mind at least a few times a day
  • Updated Reflection on : "What KIND of Twins Are They??"
  • Updated Reflection on: "What is a due date, really?"
  • Thoughts on the awesomeness that is Trajan and how wonderful he has been throughout my hospitalization, Chiron's time in the NICU and now that the X-man is home
  • Thoughts on Trajan's questions about Aurelia
  • Reflections on the kindness and awesomeness of the people in our lives
  • And honestly, the art of pumping deserves its own post!
  • Oh yeah, and HE'S HOME!!!

Sunday, February 20, 2011

Relative size

Was just watching as Paul flew Chiron across the room to me and suddenly realized that he's not that big. Paul's response: he's really not, he's pretty much doll-sized.

He seems so big to me now, it's hard to get that he's really still pretty little!

Also, we should take pictures to document this smallness. But I bet we won't.

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Monday, February 7, 2011

Simplifying domain name is much shorter than, so going to make that little change...


I had never been superstitious.  Just isn't me.  I started noticing my superstitious type thoughts growing when I was on hospital bedrest.  At first, I thought this was just due to being in an environment that frankly encourages superstition. 

Now I pretty much believe in tempting fate.

On December 21, I wrote:
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.
50 hours after I posted these words, I was being prepped for a c-section.

36,3/6.5 weeks old

A quick update on the Chiron. A couple of semi-negative things first: he has been stuck at 2.5 kilo/5.5 pounds for a week now, gaining and losing around there, he remains anemic and at times he has a murmur.

I am very interested to know his weight today to see if he is still just futzing around that same value. Here is hoping for a gain and honestly, at least a 35 gram gain.

He also had a hemagram this morning, so when the NICU reopens in a few minutes after shift change I'll be able to see updated hemoglobin and hematocrit values. We have avoided a blood transfusion so far, but since anemia can make other things (like breathing and gaining weight harder), he might need one before discharge. I would prefer the idea of him not having a transfusion, but we want what is best for him and know that a transfusion could really be a good thing for him. We got to see one of his former baymates before and after a transfusion around the same gestational age, so we know what a huge difference it could make.

I really don't know what to think about the whole murmur thing. No one medical seems very concerned and I know it could just be a result of the anemia, but I really feel like I need more information. What the plan is, what the range of outcomes are and what the number after the slash means in the grading. It's a grade II-III/VI. The grade II-III means how easily heard it is, but I have no idea what VI means, but it strikes me as a big number!

Now, positives! He continues to do his feeds by mouth. He is a better breastfeeder than bottle feeder. I think I didn't give the extra bonding of breastfeeding enough credit with Trajan because I took it as a given. It really has helped me to feel more connected and attached to the little man. It's not that I didn't love him already, but that bond was more intellectual. This seems more primordial.

I got a call from the NICU for the first time ever Saturday. And yes, that is as heart-stopping as it sounds. It wasn't anything earth-shattering, but that's where my mind went. It actually was a nurse practitioner calling because she was concerned about my oversupply. I should probably hold off going into the whole discussion and the repercussions because it stressed me out until about four other people in the NICU saying the first NNP was wrong. This has helped some, but still argggh!

It's getting close to 7:35, so I'll go see the boy for the update. They open at 7:30, but I try not to be anymore annoying than I already am!

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29 weeker

At least once a day I come across a written or oral reference by some medico to Chiron as a 29-weeker. This drove me insane the first week or so. He was 29 weeks and 6 days! Why do they truncate off? I couldn't stand losing credit for those six days. We fought for each day of his gestation and honestly, rounding made more sense to me than truncating. Doesn't thirty weeks sound much better? Actually in the weeks starting with a three...

But it doesn't bother me at all anymore. The change is a result of now knowing him as him. To be honest for the first few weeks he still largely remained a construct of my imagination. Now I definitely know him, as an individual, and this completely trumps any label.

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Saturday, February 5, 2011

24 hours without using an NG tube!

Chiron has been a pretty poor nippler since he first started (January 11 or so). Bad enough that we never tried him on the breast. Figured if he was that bad with the bottle, why try? Then, middle of this week one of his nurses declared he couldn't be any WORSE with breatfeeding, so we tried.

Chiron was declared by the lactation consultant to be tied for the most stubborn she has ever seen in getting him to initially latch, but within seconds of that latch he declared himself a boob man.

For two days, he'd feed well when I was here so he could breastfeed, but as of yesterday he seems to be transferring his skill to the bottle!!

He did have a mild apnea/bradycardia event yesterday at noon, so he's here for at least another seven days, but things are really looking like he's turning a corner developmentally.

No pressure buddy, but great work!

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Quick thought

Would she have been a photic sneezer? Trajan isn't, Chiron looks like he might be, but then again he might not. Hard to tell when he's never seen the sun.

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Location:N Lamar Blvd,Austin,United States

Friday, February 4, 2011

Attitude Matters...

So, this has no context since I haven't written anything since going into labor and delivering, but who cares since it's what's on my mind!

Attitude matters. So, we had a snow day today in Austin and I was sitting in the NICU with Chiron enjoying the calm of absence of the other parents and even staff who hadn't ventured out into the roads when the nurse practitioner for the day came along while X (yes, the appropriate shorthand for Chiron) was feeding. She told him something to the effect of keep working at it buddy, it's the one thing you've got to get still to get out of here. I spoke up and said there were two things. She started to question and then said breathing. Then started talking about how he was three days out from an a and b and like five from a non-feeding-related a/b. Fifteen minutes later, a non-feeding-related A and B.

The nurse, who is one of my favorites, was looking at the monitor and trying to come up with an argument to not chart it until I said flat out that all three lines looked like a clear A & B to me. Her response was to ask why was I not throwing things. I didn't know what she meant. At first I thought she was asking why I hadn't gotten her over sooner given he was dusky. No, she meant, why was I not throwing things in despair.

Never thought of despair. The first argument I gave when I tried to explain this to her was that I do not feel his A&Bs are any sort of neurological problem, I think they are just a developmental issue. He's getting there, he's not there yet. So, if all he needs it time, we're golden. Second, this is the longest he's gone without having an A&B. And, he's not on caffeine!

So, I think attitude does matter. At the time I mentioned that having been in the hospital for six weeks before they were born probably tempered my feelings as well. I didn't think of it to express, but having lost Aurelia entirely, having to wait a few more days or weeks seems like such a non-issue. We will do what is best for this child. I have referred to him as our tortoise and this is not a complaint. It is a blessing. He has been slow and steady and progressing from the moment he was born.

Take your time Chiron. We want you home, but we more importantly want you to master doing the things you need to do in this world in your way and in your order. I am confident that your skill in removing an NG tube far exceeds any developmental milestones for your age. Your ability to remove your CPAP while under three pounds. You are you, be you, we will be here. That's a promise.