Monday, October 31, 2011

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:


    Friday, October 28, 2011

    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.

    Wednesday, October 26, 2011

    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!!

    Tuesday, October 25, 2011

    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!





    - Posted using BlogPress from my iPhone

    Saturday, October 22, 2011

    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.

    Wednesday, October 19, 2011

    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. 

    Thursday, October 13, 2011

    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!

    Monday, October 10, 2011

    Give a little whistle...

    The world is a much better place!  Nothing big, but perhaps that's what is best about it.  Just living life and it is good, even when it's so bad (to come).

    It was one of those weekends were we didn't really do anything, but yet it was a really great time.  Kicked it off on Friday by getting the inspiration to pull out a baby sign video and we all had a great time playing with signs all weekend.  Trajan's school did sign language when he was a baby, so we really just had to reinforce and reap the benefits.  It was fantastic as it allowed us to communicate before he could talk.  Chiron's school doesn't use signs, so when I saw the baby sign time complete program on one of those 80% off sites, I grabbed it.  Right now we are in the "getting the adults and big brother into the habit of using some signs" stage, and hopefully in the next few months Chiron will start picking some up!

    We visited a friend for a few hours Saturday which was fun and then ran home to meet a crew of guys who were coming to remove a tree from our yard as it had fallen over onto the neighbor's house.  On Thursday, Paul noticed a slight lean to it and went and saw that a root was cracked and by Saturday morning it had leaned so far it was against the neighbor's house.  Luckily, he's had a guy come out Friday to look at it and they scheduled a crew for Saturday.





    It started raining during the removal and in a rare moment of inspiration, I told Trajan that if he'd switch to his sandals, he could go run and play in it.  He had the BEST time.

    video


    And at one point, Paul put little brother in a bumbo just inside the window to watch and he really seemed to like that:
    Trajan also experimented with chalk in the rain as well as just running around.

    Let's see.  I also had several good walks with the dogs.  I was also praised by Trajan for my attempt to read a book in French.  He goes to a school that teaches in French primarily (they also do Spanish and English) and so we have some books in French.  He normally waits for my dad to be there since he knows that mommy and daddy can read in Spanish or English, but not really French.  Saturday night he declared that I should try and just do my best.  It was uplifting at the end to have him assess that I really don't know French, but that I did my best and that made him happy and he got to teach me the pronunciation of two words (moi and chat) and that made him happy as well!

    The last thing that happened this weekend was not happy, and I will try to follow up with a post of its own if I can get myself to take any pictures.  The deep freeze got unplugged or something for a day or two and so the couple thousand ounces of milk that were waiting there to go to the milk bank defrosted and had to be thrown away.

    And a last happy: Trajan is getting better and better at math, but there is one thing he does that just makes me smile.  He is a pro at adding 3.5 to any age.  Why?  Because he frequently says things like, "when Chiron is 4, I'll be 7.5" or "when Chiron is four and a half, I'll be 8."  This makes me smile.


    Friday, October 7, 2011

    Case of the blahs?

    I'm unsure, but I think I may have a case of the blahs. 

    I managed to wear the same thing to work that I did yesterday.  In my defense, it's because I was lazy and just got dressed from the dryer and Chiron had thrown up on me, but the scary part is I'm not the one that figured it out, a friend did.

    I feel disconnected from my eyeballs, if that makes any sense.

    I don't really want to do any of my work, despite normally loving my work as almost a game. 

    I feel fine and not too tired or anything, just a bit removed. 

    I don't know what the point of this is other than thinking that if I can document it, then I'm really acknowledging it and taking steps towards addressing it.  I don't want to be a spectator on my own existence.  I don't want to be merely adequate. 

    Step one was successfully got myself up and out to walk the dogs last night.  We didn't run any and I think I only got myself to go because I realized we could walk to the snowcone stand a mile and a half down the road, but I did it.  I'm also back into Pilates again and I think that is likely to help shake me off.  I'd like to play soccer as the amount of running and interaction and the like in games always makes me feel at the top of my game, but between the time commitments and Paul's worries about my ankles, that's just not going to happen.

    I've never had any sort of medical depression.  I don't think I'm there now, but I also acknowledge that if I was, I might not know it.  So I think for now my course of action is to document that I'm definitely feeling a little off now.  If I'm still feeling off in another month, I think making an appointment with the grief counselor we saw after Aurelia's death/while Chiron was in the NICU would be a good first step to neither overreact or ignore something that might be going on.  Sound reasonable?

    And in the interim, maintaining a conscious effort to exercise sounds like a good idea.  Anything else?

    Monday, October 3, 2011

    I pumped to:

    I pumped to feel competent, to escape feelings of failure, to assuage guilt. 
    I pumped to give action to grief, to honor the existence of a person who died before she was born.
    I pumped to feel control, to do something, the one thing uniquely in my power to give my son.
    I pumped to feel security in the milk stockpiling in the deep freeze.
    I pumped because of the mothers I met in the NICU who weren’t able to provide their fragile child with the milk that was needed despite giving their all
    I pumped because of the seemingly stable preemies who are lost to NEC every year. 
    I pumped for all these reasons, but first and foremost, I pumped because access to breast milk matters.  So for both my son and other babies in NICUs, both met and unmet, I pumped and my grief, my fears, my hopes and my strength all flowed into the bottles.

    I pumped to honor our stillborn daughter, to protect and grow our premature son, to help their four-year-old brother learn more of the gift of giving and to help provide access to breastmilk to other babies needing it. 

    As I'm closing out my pumping career as Chiron is on Neocate and I just can't justify the time and medication restrictions to keep pumping just to donate, these are my thoughts.  Over 40 gallons of milk to the milk bank and even more than that into Chiron.