Esophagogastroduodenoscopy

Round four is apparently the magic number. Chiron is back for his esophagogastroduodenoscopy. Good news is his bloodwork allowed it to actually happen this time. Not only that, but he had a hemoglobin of 12.9! That's the highest we have seen anytime in the last few months. And his prothrombin time was good, I can't remember the number but it was 11-12 seconds with an INR of 1.1!



"Does this gown make my head look big?"

He was a really good sport about being woken up early and brought down here and going through all the pre-op stuff. Two hours of being awake, but not being allowed to eat. He was staying happy in the pre-op room as long as I was walking, bouncing, patting and humming, but cried like a baby when I handed him over to the nurse to carry back.

I think I just heard an announcement at the nurses station that they were finished in OR 2 and moving to recovery.

I find it interesting that he goes through four rooms: a pre-op area, an operating room, recovery level one with just medical staff and then recovery level two with parents.

I'm hanging out in his recovery level two room:



He's still in recovery one, but his surgeon just came by and the scope part of it was gorgeous. Esophagus entirely recovered, nice pyloric opening and just generally looked good.







Almost as cute as ultrasounds, right? ;-).

His GI did say that he wasn't excited about what he weighed in at, but we would wait and see what he weighs next week at his appointment on their scale.




And he's here, so live blogging stops ;-)
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Remembrance Day

It's amazing how one little comment can change your attitude and realign your relationship with the world.

A good friend moved to the UK after meeting, marrying and loving an amazing man who happened to be from Manchester.  She posted a message on my wall this morning that simply stated: "Did you know that in the UK, today is referred to as "Remembrance Day"?"

Basically the same idea as Veterans Day, but with a different label.  And that label got me thinking.  Mourning, while perhaps valid, doesn't really do anything good for anyone.  Remembering and celebrating just seems so much better.

Remembrance Day also fits with what I've been thinking over the last few days.  I at first thought it was very odd that I've been thinking about this recurrence of certain dates when the due date didn't phase me at all.  I think it's because they are different.  The due date was an arbitrary date.  Now there are clues and reminders that take me back.  From Halloween to Veteran's Day (going with the US name) with the coming of cool air and the time change.  I'm remembering who we were, what we dreamed of and what we experienced.

We return back to the same place around the sun, but I am not the same.

Remembrance to me conveys celebrating the happy, the hopes and the significance that she had.  Because while she may never have breathed, she did impact the world.  So today is a day of celebration to our daughter.  Remembering every single ultrasound resulting in some sort of comment about her beating the heck out of her brother.  Remembering laughing about how she was in a typical singleton positioning in the uterus with her brother showed transverse across the top in a position more typically seen in triplet pregnancies.  Remembering the dreams and hopes that we dreamed for her.

We sent popcorn to the antepartum and L&D part of the hospital today as part of our remembrance.  It's amazing how long it took me to decide what to say on the quick little card.  It's easy with the NICU because it's really just about Chiron, but this group of people includes those who cared for Aurelia and all of us while they were still in utero.

I went simply with "thank you for the care you showed Aurelia, Chiron, Trajan, Paul and myself during our time there" and signed it.

So if you have a moment this Remembrance Day, take a second to think of our daughter and join me in a smile for her.  I'm glad she existed.

The boy behind the baby

In the last week or so, the boy that is going to replace the baby that we have known as Chiron has started to be be occasionally visible.  He's still definitely a baby, but the glimpses of the boy are coming more and more often.

This was his first time in a grocery cart.  And yes, he managed to maintain this level of joy for more than a full hour and wanted to stay longer!

He's definitely still a little guy, 15.5 pounds or about 7 kilograms, but he is getting much better at control of his movements, gross and fine.

He's also getting better at eating.  He is gagging and vomiting a lower percentage of the time now.  Despite this improvement, they decide to schedule a esophagogastroduodenoscopy for Monday.  The reason behind it is that he is still underweight (failure to thrive is a mean sounding term), has had some weird absorption issues show up in his blood and has had the gagging and vomiting issue.  I believe we aren't expecting to turn up anything that will change anything we are doing.  But in the case that something did show up, what "it" would be is something that we want to know.  Main negative is it does require general anaesthesia.

Right now, I dub a meal to be done when I run out of towels and bibs from catching vomit, but hopefully this will soon be a thing of the past!

We are loving the hints of the boy that are coming out and can't wait to see more as he continues to develop and master new skills! He next goes to the developmental pediatrician at the one-year mark where we are hoping he will be closer to his calendar age than his adjusted age in terms of milestones.  A couple weeks ago when we went he was about halfway between them on most dimensions.



Serious Progress, huh?

Truths I have learned in the last year:

There are no right words.  But no words is definitely wrong.  Just an “I’m sorry” or “that sucks (perhaps with a bit of profanity thrown in)” goes a long way to making the individual still feel connected to the world.

Perhaps the worst aspect of grief or catastrophe is the sensation of being alone in the experience.  The power of making a connection with someone else who has experienced something similar really amazed me.

Joy and sorrow can go completely hand in hand.  I found a flip camera recently and there were some videos from the NICU in Chiron’s first week were Paul and I are laughing and joking.  In retrospect, it amazes me that we experienced anything other than anxiety, grief or just plain being overwhelmed.  But in the moment, the entire range of emotions can occur.

Macabre humor can be one of the strongest weapons in the arsenal to deal and continue functioning.

People are greater and stronger than I knew.  The strength and compassion of our friends and family in supporting us has floored us and continues to do so.  Humanity and our connections to each other I now am convinced is the main source of our strength as a species.

There’s a catch-22 in the loss of a child: others don’t want to bring them up because they fear it will make you sad, but it is much easier to discuss them when the other party is the one who “remembers” their existence.  I think this was particularly pronounced in my case as I have had so much trouble with vocalizing her actual name instead of just using pronouns.  Did it right there, see?  Aurelia.

There’s an Elizabeth Edwards quotation from a speech she gave in Cleveland that I think communicates the truth about discussing a dead child amazingly well: “If you know someone who has lost a child, and you’re afraid to mention them because you think you might make them sad by reminding them that they died—you’re not reminding them.  They don’t forget they died.  What you’re reminding them of is that you remembered that they lived, and … that is a great gift.”  In our case, Aurelia never lived, but I still think this is true.  And based on some friends I have known with miscarriages, I think it remains true there as well.

On the Elizabeth Edwards train of thought, I think she is on to something with her quote on resilience.  It was going around the internet about the time the twins were born and stuck with me: “Resilience is accepting your new reality, even if it’s less good than the one you had before.  You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”  I believe this is what we have done and our family is stronger for it.  I didn’t notice it at the time, but my philosophy I wrote about really is the same idea as what she said.

Seeing the flipside has only resulted in positive outcomes.

Someone connecting with what you are thinking can be incredibly powerful.  When Chiron was born, the most common statement was "Congratulations!," even from the nurses in the antepartum area.  While based on the very first truth, say some words, this was appreciated, it always felt a little awkward to me.  Were they congratulating me for delivering my son over ten weeks early?  This seemed odd to me.  One person said the exact opposite, "I'm sorry."  And she said this in the context of Chiron's birth, and I remember being so struck by her ability to acknowledge what I was actually feeling.  I don't think it is chance that this is a friend who has struggled with infertility.

The effect of someone including your dead child's existence as a part of their universe is powerful.  I'm pretty sure the passing comments, texts and messages that acknowledge Aurelia either directly or indirectly, through recognition that I have been pregnant with a girl child or with twins for example were made with no idea how much they could make me smile.  Thank you.

There's a semi-secret community of people who have lost children.  And whether through miscarriage, stillbirth or death as a child or an adult, everyone apparently belongs and that is nice.

There is no way to quantify grief.  I still try to think about whether one type of loss is better or worse than another, but I should know by now that you just can't rank these things.

Labels will always be hard.  The one in particular that I really have trouble with is whether I'm cheating somehow to count Aurelia as a stillborn child.  The strictest definition typically seen is at least 24 weeks and 500 grams.  She died just past 24 weeks and was born at 30 weeks.  When she was born, she only weighed 397 grams (though for some reason, this is the only number I don't feel completely certain on).  However, she weighed less because she had been dead for six weeks than she did at the time of death.  So, I think she probably does count.  And I know multiple babies who were born at the gestation she died who are alive and even developmentally normal.  I just feel like I'm cheating calling her a stillborn next to those who deliver full-term stillborn children.

The mind of a child enhances existence, even the hard things.  Trajan's understanding and processing of the last year has strengthened me and helped me in my own processing.  He and his mind remain the thing in the world that most amazes me (just starting to see this in Chiron as well). 

I am blessed.  And lucky.

Day of Significance

I've been trying to write a post and it's just not happening.  I'm not sure why I want to write it, because I really already did, but I still feel like I need to write something.

I guess the difference is that was about what I think and right now I'm thinking more about everyone else.  Our friends and our family.  Our network who has been amazing throughout the last year.  I guess I just wish that there was a day that I knew that she would cross their minds.  A day of some significance.  But I don't expect there would.

The typical choice for a stillborn child is their birthday, the day that they gained a physical independent presence in the world.  But that is also the day that Chiron was born.  And it may not seem fair, but that day is more about him and the start of his journey.  And that's even to me who carried both of them.  I really can't expect anyone to think of her on their birthday.  And is it really even her birthday?  Technically, I don't think she was born.  We didn't get a birth certificate.  Medically, I think she was just removed.

And it's not just because it is also Chiron's birthday that this date doesn't make sense.  Perhaps even more important is the fact that she had been dead for almost six weeks.  We had all come to terms with a reality in which she was not living by then.  All that remained were our physical goodbyes.

I really think that November 11 is the day that will always be specially hers in my mind.  But as this is essentially a construct of my own mind, it will not have significance to others.  Why do I say it's a construct?  Because we know she was alive the afternoon of November 10 and we know she was dead by 8:00 am November 12.  The perinatologist made a guesstimate that it had probably been the night before and so I've run with November 11.  Since I've since read that fatalities due to cord compressions most likely occur during 2-5 am, it seems likely it was actually November 12.  But I'm sticking with November 11 in my mind regardless.

Facebook doesn't give you a slot to input "date I delusionally credit as the anniversary of the death of my stillborn daughter" though.

So, what is the purpose of this post?  I really don't know.  I guess it's mainly to sort out in my own mind that I haven't worked through everything yet.  I find myself thinking that I've really come to terms with everything, but this is not true.  And probably never will be.

And the real reason I'm writing this?  Probably that I need to send something out there to the universe every so often as a sanity check to make sure that she was not just a figment of my imagination.  That she existed.  That she was Heart.  That she abused her brother in every ultrasound we ever saw.  That her name was Aurelia.  That she had a middle name despite the fact that I was asked what it was for the first time within the last couple weeks.

All that long ramble aside, I have gotten amazing evidence of her significance in the last few weeks.  In addition to the Scrappy Doo Preemie super hero entry, which he came in first place and is going to judging on (!), we also created a fundraising team for Hand to Hold based on both Chiron and Aurelia, http://goo.gl/QUmZo.  We did share this with a few people and I stuck it on facebook twice, but we really didn't work to try to get people to support them.  We just made it available.  And as you can see if you clickthrough, people were amazing.  The number of separate family units that added their resources to ours has floored me. So, while there may not be a certain date that they all will think of her, I know there are dozens of people out there who have Aurelia cross their minds at times.  And that makes me smile (and perhaps cry).

Heart & Eggplant

EEGs for fun!

Trajan has now managed to get not one, but two EEGs in his life despite probably never needing any.

The first time is because one of his teachers at day care maintained that he had had a three-minute seizure prior to six months.  This earns you an immediate trip to the neurologist (even if you really don't think she makes sense/you believe her) and an EEG.  So we went to the neurologist a day after he turned six months:

At this age, they have to sleep during it, so we had kept him up for a few hours before hand.  He was a really good sport about it:

The results at this time were normal and the doctor said that he wouldn't say she was lying, but that perhaps she confused the jerkiness that all babies can have with a seizure.  It's something called myoclonus if I remember right.  So, he was released from the neurologist!

Then, last spring we started having some behavior problems with him. We were in the pediatrician's office when one occurred and she thought it looked more like a prefrontal cortex seizure or some term like that and so referred us back to the neurologist.  It takes a long time to get into the neurologist, even having seen them before, so it took six months until we finally got into our appointment last week.  This time he got to do the entire thing awake. 

He was really, really good throughout the entire thing.  Still when we was supposed to be, tolerant through the strobe lights and even hyperventilated for us for the three solid minutes as they requested.

The results this time?  Another normal EEG.  And after waiting six months to get in, the doctor got called away to an emergency and so we weren't able to see him.  The results were normal enough that the PA and I agreed that we didn't need to reschedule him to see the doctor at this time, but that since the description the pediatrician had sent sounded so much like seizure activity, to call her if the episodes resume and they would work him in at lunch almost immediately.

Fun times with EEGs!
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Dentist and Work

Chiron had his first dentist appointment on Thursday.  It was at 9:30, so I was going to drop him off, go to work for an hour, pick him back up and then go when a coworker mentioned she hadn't gotten to see him in a while and so I decided just to bring him in with me.

He had a great time playing and meeting folks:

Origami King Tut Mask is so tasty!

And yes, that's my desk that is completely overrun wtih papers.

I did find one thing particularly amusing.  There was a professional exam being administered in our office and the signs warning people in the area to be quiet had not gotten put up and so our receptionist asked if I could do it when I was on my way out.  It for some reason amused the heck out of me that she was sending a baby to put up signs telling people to be quiet including directly on the door of the conference room where the test was taking place.  Of course, Chiron is so easy going that I wasn't really worried.  He didn't make noise other than babbling the whole hour and change we were in the office.  It was just the premise that tickled my funny bone.

Then is was off to the dentist!  He was tucked in the sling and the women in the front office all came around to look at him, which earned them bonus points in my book for appreciating his awesomeness.

You might be asking why I was at the dentist with a 10-month-old.  Well, last winter when I was in with Trajan, I happened to mention that he had a brother now who was a preemie.  The dentist, who we love, said that there can be some issues with the enamel on the teeth of preemies and so he likes to see them by one year to get everyone on the same page, establish good habits and just to get a baseline on their mouths. 

He really wasn't as starled/distressed as that picture looks like, but I love the idea of, "you're going to do what to my tooth??!"

He actually was amazing about it.  Even got his tooth cleaned!



A couple bits of good news.  First, we apparently have good oral hygiene habits, yeah!  And two, I had thought that the enamel issues would be both baby and adult teeth, but he said that it is more often confined to just the baby teeth and the latter ones at that.

He goes back in six months! 

Nut Whining..

Trajan's school has always had a no-peanut policy. It was the only school-wide allergy policy and this made some sense as there are a handful of kids across several grades who have varying degrees of peanut allergies.  All other allergies were handled at the classroom level and according to the severity of the allergy, the age of the kids and the responsibility of the kid with the allergies.  Still seems reasonable. 

Then they decided this year to go nut-free.  A little irritating, but since there is a reasonable frequency of cross-reactivity between tree nuts, I didn't whine at all (well, or just to Paul).

I have an anaphylactic food allergy to cinnamon and so I get the significance of food allergies.  I also experienced Trajan's allergic enterocolitis/protein intolerance and so understand the challenges of reading labels.  If an allergy is severe enough that being in a room with it can cause a reaction, steps should be taken to ensure the safety of that child.  The total number of food allergies in any one classroom, or even larger groups that eat together, shouldn't impose too significant of a restriction on families for planning snacks and lunch.

I definitely think that it is important to educate the child in the importance of being careful about what they ingest.  This is possible from a very young age.  I have a friend with a child who had PKU who definitely had this concept down cold by the time he was two.  That said, particularly with preschool-aged kids, being a little extra safe and eliminating the likelihood of their coming across the food as well as educating them about it seems wise.

I'm sure it's obvious by now that there is something that I do object to.  And there is.  Trajan came home the other day and said that he had gotten in trouble for having a sunflower seed butter sandwich and that no butters were allowed.  No sunflower, no pumpkin, no soy, no sesame, no nothing.  Seriously?  And this is with no kid in the entire school having an allergy.  The best answer I've been able to get is that butters seem to be more likely to cause allergies.  I've got an email into someone who I hope will give me an official answer, but so far it sounds like they really are saying no butters.

Taking sunflower seed butter as the specific example, since it is the one we were using, there is definitely a risk of a food allergy, but it is relatively low.  If they were to not allow all foods with this level of allergy, they would also need to put a ban on cinnamon, celery and tomatoes. 

Oh, and we are careful to purchase a sunflower seed butter that is not produced on machines that also produce tree nut products.

Is it a litigious society?  It is laziness and it's easier to just ban everything?  I'm thinking it is the latter because Trajan actually said that at first the aide just told him that he wasn't allowed to have a sandwich.

So, am I being unreasonable?  Do you think that a blanket ban on all "butters" as well as any product containing a tree nut is the best policy?  Note, there are kids with non-tree nut allergies whose allergens are allowed in the school such as strawberries and melons.

There are also a number of children of vegetarian and vegan households at the school, so this policy seems like it would definitely negatively impact the ability to get protein into their snacks and lunches.

Whining completed.

Unrelated picture except for the fact that Chiron is wearing food and the topic included food.  Also, we could feed Chiron the sunflower seed butter and he's not allowed to have any dairy, soy, wheat, eggs, tree nuts of any type, fish, shellfish or red meat.

Halloween Bits and Pieces

The day started with the classic tale of a boy, his fish and his possessed dog.

This was the first year that Trajan really 100% got the idea of Trick or Treating.  Knew what he was supposed to do and say and what would happen.

Trajan, Chiron and I went down to a neighborhood Halloween party while Paul cleaned up from dinner.  Chiron was charming as Scrappy Doo. 

Trajan, well Trajan's costume was another issue.  He had asked weeks ago (while we were in a Halloween store) to be Super Why.  Once we figured out who that was (hint: he's a super reader), we said sure.  Amazon had a costume and so we ordered.  However, Amazon only had the 3t-4t in their direct shipping.  There was a 4-6 that would be fulfilled by another shipper.  Meant an extra $3.99, but seemed a reasonable price to be more likely to fit. Fast forward two weeks and middle of last week I suddenly realized it hadn't come.  At first they said they would get it by 10/31 (too late for several events) and then they eventually just said they weren't shipping it.  So, I got a Super Why play kit consisting of a mask, cape and wand over-nighted.  

He wore it over more appropriate colors for the first few events, but by last night he was just a kid wearing a small cape with a mask on his forehead over jeans and a t-shirt.

First fun fact: I opted to pick the path that involved climbing up and down hills to access many of the houses.  This may have partially contributed to him requesting a rest and sitting on a curb three times.  In the exact case of the picture above, he sat down and started talking to me about the moon and how he could still see "the darkness of the rest of the moon."

Second fun fact:  I don't know if it's a thing here or if it happens everywhere, but there are a number of Trick or Treaters who get driven into our neighborhood to Trick or Treat.  We came across a particular large group of them that Trajan requested to follow.  He got right in the middle of them and joined with them, talking in Spanish.  And in line with the theme of the night, the discussion seemed to mainly be about la luna.  Was fun seeing him just blend in, Spanish and all.

Third fun fact:  We came across a house where there seemed to be a large gathering of people who were early 20's and Trajan for reasons known only to him decided to say, "Trick or Treat, Man" to them.  Produced great jocularity.  And then I may have made a joke about two of them being in costume as intramural basketball players, so Trajan and I now have new friends.

Fourth fun fact: Trajan asked me why I wasn't Trick or Treating.  I said something to the effect of being too old and so they wouldn't give me any.  His response, "so, the kids have to get the candy for the moms and dads?"  Insightful kid!

Fifth fun fact:  He was great about having to go home and only eating two pieces, but I was amused when I heard him go into the bathroom, exclaim "It's Halloween!" and then pee.  Not sure why this tickled my funny bone, but it did.

Sixth fun fact: There was a house that has a tree growing over the pathway and he battled through it in the center instead of following some stepping stones around.

Seventh fun fact: As he went to sleep he declared "today, I need privacy, because I messed it up again."  I had no clue what that meant, but I resisted investigating when he closed his door.  And for that I'm proud.  Still don't know what it was about... It came on the tale of "because I'm four now, not three, so I do new things now.  I did puppet shows because I was three, but I changed years and am four now and so I do the game of school."  If you know what that means, feel free to explain it to me!

Eighth fun fact:  I let him pick two pieces of the candy to eat before bed and one he chose was Sour Patch Kids.  His expression:

 Ninth fun fact: he actually slept under his sheet and blanket last night, so must have been a serious adventure:

Yup, that's his too-small cape at the foot of the bed.  He also didn't bother to bury himself in babies, so definitely tired.

Tenth fun fact: Perhaps my new favorite Trajanism.  On being told that we needed to head home because of something to the effect of it being the middle of the night: "It's not the middle of the night, it's the thirds of the night!"

Chiron was sleeping and thus doesn't really appear in these tidbits, so here is a bonus of him wearing a hat from his grandparents' mental asylum costumes.

Why I object to the label Miracle...

Reasonably often, someone refers to Chiron as a miracle baby.  While I don't object or typically even say a thing to them about it, I really object to this term. 

First, I really think that this fails to credit the very skilled and very real effort that was put into him by his medical care providers.  That still is.  It fails to credit what has been learned across millions of other babies.  It fails to acknowledge that he did need support and that support was provided.  And that's something I think we can all get behind.

Second, if he's a miracle, why him and not a different baby who hasn't had his good outcome?  Using the term miracle somehow leaves me feeling that there is an implication that he earned it somehow and anyone who has spent time in a NICU can tell you that that is not the case.  Being a good person or wanting it desperately is neither sufficient to ensure a good outcome.  If a family could ensure a good outcome just by wanting it enough, there are some stories I know among just our friends that would have ended differently.

Third, I think it makes it sound passive on Chiron's part.  And yes, we normally think of gestating as passive, but I saw Chiron during that time he was completing his gestation in the NICU and he definitely gave of himself to fight and continue on.  He is definitely a part of his success story.

Definitions:

A surprising and welcome event that is not explicable by natural or scientific laws and is considered to be divine.

2. A highly improbable or extraordinary event, development, or accomplishment.

Looking at these definitions, I've found one more objection.  His continued existence, and even looking like a pretty great outcome, is neither surprising nor improbable.  The likely, or ordinary, outcome at the time of his birth is that he would survive and with a positive outcome.

Are we very blessed?  Yes.  We were blessed that we had great medical care that allowed us first to keep him in for six weeks and then to care for him excellently after he was born.  We are blessed in our friends and family in our support system.  We are blessed that a negative extraordinary event didn't occur.  But do I think he is a miracle?  No.

I do think he's pretty awesome though:

A sweatshirt and a backpack...

Apparently make the college student.

I'm in good ole Sherman, TX for an alumni board meeting for my undergraduate school.  There are several meetings a year, but this is the one that is always coupled with Homecoming.  Unfortunately, it is also combined with Halloween this year.  We have a minimum of six events we are going to try to make it to between Saturday and Sunday, so I won't be able to stay for the weekend.  I also didn't bring the boys for the same reason.

That said, I don't want to miss people entirely as long as I'm here, so I've decided to hang around for tonight and then drive back early tomorrow morning.

That's your context.  Now for the explanation of "a sweatshirt and a backpack."  After my meeting finished, I still had several hours before a group of friends would be here for dinner and to watch the baseball game, so I decided to work on the setting up of my laptop which just got a new hard drive and possibly finally updating to iOS 5 on my phone.  I stopped by the bookstore to grab a sweatshirt because it was colder than I anticipated and I can always use another dog walking sweatshirt. So, I found myself walking across campus wearing an Austin College sweatshirt with a laptop backpack on my back.  I thought to myself that this is probably the last time I can possibly be confused with a college student.  I thought it, but I figured I was probably deluding myself.

Nope.  I came across people from the board and got a double take and comments and most impressively a declaration by one of the VPs that I've known for forever that I completely disoriented him.

I'm still confident that this is probably the last time in my life I can pass, but I still am amused by it.

Now, if I can just have technology treat me well and get news soon on the data recovery front from Paul (or his subcontractor), I'll be on track to take over the universe.

Last bit of awesome news:  it's worthy of its own post on my thoughts and things I've learned, but I thought I'd update the world that through the awesomeness of our friends and family, Chiron is currently in first in both the voting competition (http//goo.gl/Tgocc) AND the fundraising competition (http//goo.gl/QUmZo).  I'm particularly impressed by the number of people who have donated in both Chiron and Aurelia's names to Hand to Hold.  We have told a few people, but really haven't been actively soliciting donations, so the fact that we have almost 25 separate family units as donators in their names absolutely floors me.  And, people have been remembering BOTH of them.  Apparently Aurelia is not just a figment of my imagination :-).

I will take pictures this weekend, I will.  One of Amazon's shippers is on my sh*t list for not shipping Trajan's desired Super Why costume, but we are rolling with it.

Holy Tooth, Batman!

Trajan didn't get his first tooth until over a year.

Don't need teeth to be happy

Seriously, the kid was eating steak before he had teeth.  And then the lower two came in together:

Two teeth!

As a result, we haven't even been thinknig about looking for a tooth on Chiron.  So imagine my surprise this morning when he sticks my finger in his mouth and I feel something!  It's the lower right tooth and it's through the gum.

Getting a picture of a tooth is near-impossible and I dubbed to be actually impossible during the hours that are referred to as morning, so no picture, but take my word for it, definitely a tooth!  No drooling, no fussing and no fever to combine to make it even more awesome.

And in more good news, Chiron ate both last night and this morning without gagging and throwing up.  For the first times ever!  I think this is because I finally broke down and talked to doctors yesterday.  Apparently taking action is enough to fix the problem. 

No visual of tooth for you!!

Nebulize the blues away...

Chiron has his first cold. He started sounding a bit piggy-like in his breathing Tuesday and was breathing really rapidly by Friday, so we took him in. The good news is it's not RSV! The bad news is there definitely was some junk in his chest and so they sent him for chest x-rays.




At first he found the baby chest x-ray chair to be interesting, but then he decided it was not fun:




The chest x-ray showed some stuff going on, but was not pneumonia and so we decided to manage him at home with nebulizing. Even decided not to so steroids yet.




So, here's my dilemma. How do I nebulize him happily? The first few times he did it alright, but I think that was largely due to the novelty. We have tried it with him swaddled. We have tried letting him watch tv. He's just unhappy about it now. Any advice?

He's been happy throughout, except for the whole nebulizng thing!





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Scrappy Doo Part II

I wanted to add in the section that we called "our story" in his fundraising campaign from preemie power, just so I have a record of it.

Our Story

The prompt was tell your whole story.

How can I write a whole story? Because a story of a person, or a family, doesn’t have a beginning and it doesn’t have an end. If you think about it, we existed in our parents who existed in their parents. We have no beginning. And while we are alive, we definitely don’t have an end. And I think even when we’re dead, we don’t really have an end, because we still impact people. So, how do I write “our whole story”?

Do I begin at meeting my spouse, or do I begin at marrying him? Do I begin with the birth of our first son? In this case, I think “our whole story” is confined to one pregnancy and its aftermath.

In the spring of 2009, we decided we were ready to have another child. Went to the OB, started trying and luckily were very quickly pregnant. Five weeks into that pregnancy, had an ultrasound and it looked like it was probably twins. Seven weeks, definitely twins. And I guess that’s the beginning of our story.

For the sake of brevity, I'll skip ahead to an anatomy scan at 24 weeks at the perinatologist. Both babies, who we now knew to be a boy and a girl and had named Aurelia and Chiron, were deemed perfect and viable. For the first time, we relaxed a little.

Two days later, at a standard OB appointment it was found that our baby A, Aurelia, no longer had a heartbeat. I guess this is where the meat of our story happened.

In response to the inter-utero fetal demise, I went into preterm labor the next day. I spent the next almost six weeks on hospital bedrest until labor could no longer be stopped one day before 30 weeks. As the on-call OB said, "happy birthday" came on December 23, 2010.

I was lucky enough to have my actual OB come in slightly early to deliver them. As Aurelia was the presenting twin, labor was too risky and so they would be delivered by c-section. At 08:15 on December 23, 2010, Aurelia was "born". Chiron followed one minute later at 08:16.

Chiron was screaming, Aurelia was forever silent. We briefly got to see Chiron in the transport unit and then they whisked him upstairs to the NICU. Paul was able to go with him. I was left with a diaper in Chiron's size.

Through the intervention of a fantastic OB and great hospital staff, we were both able to spend time with both babies that day. It was the last time we would hold and see Aurelia before she was returned to us in an urn.

Chiron spent the next 53 days in the NICU. We were lucky that this was generally a positive experience and didn't produce too much stress. All of the staff was incredibly supportive and helpful of our entire family including older brother Trajan who was a little under three and a half at the time.

We were able to connect with other families to not feel alone. We were connected to resources which helped us do the best for our family for all three children. Not everyone is that lucky, and this is part of the reason we feel supporting Hand to Hold is so important.

This is obviously not the entirety of our story, but hopefully it is enough to communicate both the significance of having support and the life altering nature of both premature birth and infant death and stillbirth.

Our story goes on, and it's good. And we are overwhelming blessed in the quality of our friends and family in supporting us. Hopefully the telling of a part of this story to all of you has served as part of our giving back for all you have meant to us over the last year. I can't believe that it is already less than a month from a year, but I am even more astounded by how amazing you all have been.

(It might be scary, but there's a substantially longer version of this out there. If you want to see it, just let one of us know.)

It's from http://donate.handtohold.org/site/TR/Events/PreemiePower?px=1003762&pg=personal&fr_id=1051, but I imagine that won't stay up. A lot of this is in in "our whole story", but I wanted a record of how we communicated it to our friends and family.

We raised $3,280, WAY over our $50 goal.

Scrappy Doo

So, Hand to Hold, a local non-profit focusing on NICU residents/graduates, preterm labor and pregnancy and infancy loss, is having a competition called Preemie Power where people enter their preemies as Preemie of the Year as a superhero.  I wasn't going to do it because I knew I wasn't going to ask people to vote, but a friend who works there asked that people submit to get more involvement/awareness and so I did.   You can see what I wrote at: http://goo.gl/Tgocc (it's short for http://wildfireapp.com/website/6/contests/154302/voteable_entries/33446259).

Filling out the application had me really stop and think about it and the kid really is Scrappy Doo.  Scrappy Doo is a nickname one of his NICU nurses called him, because he always seemed a bit stronger than they anticipated at every stage.  Still remains true.  I guess I'm bothering to write this to reflect on the fact that he is strong, good-natured and just all-around a good egg.  And I think we should keep him.

In other news, Trajan has requested that Chiron be Scrappy Doo for Halloween, so there will be a picture coming of Chiron in Scrappy Doo attire!

While I'm not attempting to get people to vote for him, it's worth taking a moment to look at http://www.handtohold.org/, because it's a really cool organization.

Wow!  I'm editing this because what I said isn't true anymore.  I wrote this post because I accidentally published it to Facebook that I had voted for him on my wall and that made me think about it.  Well, that same click has resulted in an amazing number of people voting for him.  He's flown from somewhere 60th to 70th place to 11th in the last hour! 

What I'm really drawing from this is that people really care about this little, scrappy fella.  He made a frequent appearance on my Facebook page since well before he was born and I really think he must have a lot of cheerleaders for that progress to have happened. 

The other lesson is that perhaps I should think about opening up more to the general world on the issues of prematurity and stillbirth and the like, because there are people out there that will hear.  Not harp or anything, but perhaps a bit more reference.  I posted the same night we found out about the demise and was floored by the response from that.  I posted throughout the NICU stay and really was amazed by the compassion and connection of people.  The other day I posted just a little picture showing that he was sitting and was truly astounded by how many people stopped to comment or just take the time to hit the like button. 

So, I like humanity and am glad to be a part of it with y'all. 

BM Dump isn't what you think

Refrigeration is important. 

Sunday, I made a quick trip to the grocery store to grab something we needed for dinner and came home to Paul fiddling with the longest extension cord I'd ever seen indoor.  Turns out that the deep freeze in the garage had lost power at some point.  Yes, the deep freeze holding a couple thousand ounces of frozen breast milk.

It was still cool, but all was melted, so this meant the milk got to go in the trash:

And yes, that box is completely full of milk too:

And here's what you see when you remove the box to take one more picture, just because you are a bit crazy:

I didn't cry or suffer a breakdown and I am veryproud of this fact.

Now, you might be asking yourself why did I still have this milk?  I guess I was thinking somewhere in the back of my mind that maybe the gastroenterologist would put him back on breastmilk at the three week followup and so I was holding off taking it to the milk bank, just in case?

Sorry milk bank!

The trash got picked up this morning, so it's gone.  Sigh.  I am proud of myself though.  I have intentionally avoided grabbing the data and calculating what amount of time that quantity of milk translates to.  I also didn't actually go through the milk and systematically add up the volume.  See, some sanity!