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!





- Posted using BlogPress from my iPhone

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!

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.

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.

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?

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.

No more pumping, much more stinking

As I mentioned before, Chiron was moved from breastmilk onto Neocate when he was in the hospital at the beginning of the month.  For the first while, I was still pumping the same because the gastroenterologist said we were probably going to move him back to breastmilk, but this didn't come to pass, so I'm working at stopping pumping.  I considered keeping pumping just when convenientish for the sake of continued donation, but I concluded that I'm not that altruistic. 

The other half of this post is stinking.  Seriously, formula reeks.  I'm guessing this one might smell even worse than others based on what some of the nurses said in the hospital.  His room smells like it, the rest of the house hints at it, he now excretes Neocate smell rather than sweet smell and his poop stinks.  Seriously, how can so much stink?!?

That said, he's happy on it, spitting up less and appears to be gaining weight, so I heart Neocate.  He has a nine-month appointment tomorrow, so looking forward to seeing if the weight gain has continued.

Another plus is that in Texas, Neocate is required to be covered by insurance companies even when taken orally.  So, we get 12 cans for $50 which beats $40 or whatever a can!

I intellectually got that he's small, but I really don't think it was driven home until I took a picture this weekend.  He just seems so proportional and sturdy and happy and healthy that the size doesn't really register in my mind.  Until I saw this:

She was born a month after him at a month earlier gestational age. 

And for a bonus:

Doesn't it look like the world is ending?  The kind of body language you expect of someone outside of their destroyed house?  He just had to run inside for a minute, but it struck him particularly hard in that second.

Also, Trajan got a haircut:

Back when Chiron was in the hospital

Vagaries of Obstetrics

Three events have happened in the last couple weeks that have driven home to me that pregnancy, gestation and babies should never be taken for granted.  You can not approach pregnancy with an attitude of complacency as there are no guarantees.  There is no safe moment, whether six weeks or 38, you are always vulnerable to the vagaries of obstetrics.  And no degree of goodness or wanting it or truly being qualified to have a child can save you, you remain vulnerable.

The flipside of this is it really drives home that nothing I did was the cause of our loss.  That it in no way was because I wasn't good enough, or I made a worried comment about handling two or that the cosmos judged us and found us wanting.  Sadly, it doesn't work that way. 

And sometimes it sucks.  And my heart is hurting again for the losses of friends and the welcoming of more people to this secret club of people who have lost a child that you never knew existed until you qualify.  Good news for them though is there is this club.  And you will find people.  And not just among those near you, there may be a chance encounter at an airport or a car dealership or almost anywhere that will help.

Seize the day may sound trite, but it's true.  You can not know the future, so grab each moment by the hands and experience it.  I'd take sorrow over regrets any day, so I choose active engagement over passivity.

Should I be calm?

I was talking to an entirely random stranger and it led me to question if I should be worrying/panicking/alarming more about Chiron.  Somehow we started talking about kids (grand kids in her case) and what they did and I mentioned that while Chiron loves holding fingers or a chair and standing, he doesn't sit.  He will sit in a bumbo, but try and persuade him to adopt a tripod position sitting on his own and you will have a locked-hip baby on your hands.

I've always kind of just thought that he doesn't like sitting.  And he can do things in his own order and it's all fine.  He's an alert, happy, smart, talkative little boy. 

But can I have this attitude given his prematurity?  Am I taking a luxury that we don't have?

Writing this has made me go do a quick google of developmental milestones and I think he's doing ok.  He definitely is inconsistent in his skills, but sitting is the only one that is behind his adjusted age and he even is hitting some at his chronological age.

Things he can do:
Roll in both directions
Stand holding things
Support his whole weight on his legs
Transfer objects between hands and mouth
Pull things toward him
Use a pincer grasp
Laugh/giggle/coo with both consonants and vowels

Things he doesn't do:
Sit on his own (either with or without support of his hands)
Scoot when laying on his belly
Doesn't chain sounds or combine syllables
Pull self up to standing position
Clearly recognize his name

He has an appointment with the pediatrician next Friday, so I will go ahead and get her feedback on this, but I think I probably am ok continuing with my being calm.

Days 54-59 of hospital stay for Chiron's life

As I mentioned briefly, Chiron took a bonus six-day trip back to the hospital at the beginning of this month.  I took him in because when Paul brought him home from daycare he was really lethargic and his daycare sheet indicated that he really hadn't eaten that day and had spent almost all of it asleep.  My best, medically uneducated guess, was that maybe he had a little stomach bug that we weren't noticing with his GERD and he had gotten dehydrated.  Checked in with doctor and they said to go ahead and take him into the ER where they might give him some fluids.

Chiron and I get to the hospital and he's asleep and so I decide to just leave him in his "bucket" (car seat carrier) rather than move him to a sling and carry him in that way.  We are standing in line to get information to be able to go sit in the waiting room for triage when a nurse walks up to me.  She asked if he's always that pale and I answered no.  She started a sternum rub or something like that and he was not responding.  Other nurse calls back that they have an unresponsive infant and so are bringing him straight back.  My blood pressure starts to rise.  I actually put a hand on him to confirm for myself that he had a respiratory rate.  They rush him back and get into a room.  He's still looking pale.  He's still not responding.  Then as soon as we unbuckled the straps he popped awake.  A picked him out of the seat and he grabbed my fingers and stood on his foot and cooed at the nurses that were standing there.  That's one way to skip a line.

He spit up a Longhorn, way to impress the medical staff in Austin, home of the University of Texas Longhorns

They got the story, examined him and then said they would go ahead and draw some blood and give him some fluid.  Unfortunately, he's awful to start an IV in.  First person tries, no luck.  They get the charge nurse, no luck.  They get the floor supervisor, no luck.  They get someone who apparently is the champion head sticker, no luck.  They call up to the NICU and got one of the nurses and first poke she is in.  And she looks at the amount of blood they need and declares that it makes sense just to do it with a heel stick.

Can you spot all four bandaids from the four attempts before the fifth was successful in starting an IV?

Doctor comes in and says they're going to go ahead and admit him.  In retrospect, I realize they didn't really tell me why.  Apparently he looked off enough to me that I didn't question admitting him. Actually we were told they were admitting him somewhere around stick attempt number two, but we couldn't go up to the floor until the IV was in place.

Asleep after the IV was finally gotten, but before we headed up to the floor.  Very pale.

Get up there and the on call resident tells me that he is severely anemic.  Anemia at his age starts at 11 for hemoglobin and he was 6.8.  She also said that seeing him reassured her because when she saw the number she was expecting a much sicker baby.

They rounded that morning.  They came up with the theory that he had existing reflux that he'd gotten a minor stomach bug on top of and that explained things.  His gastroenterologist came by and said they were going to schedule him for a scope (EGD) the next day first thing in the morning. 

Looking much better with a little hydration

They cut him off from food at 4 am to prep for the scope that was scheduled for 9:30.  9:30 comes and something has come up and so they have to bump him to 3.  They let him eat once right then just to avoid cruelty.  They decide to get some additional bloodwork just for information.  We take him down around two or so to the surgical floor to get started.  Then they declare that his prothrombin time came back to long to do the surgery that day and we go back upstairs. 

His one permitted feed between the two fast periods.  Apparently being deprived of food pushed him to decide to take things into his own hands.

The doctors (it's a teaching hospital) all come upstairs and say he presents oddly.  The "picture" apparently isn't fitting together, but they are going to start with treating the symptoms.  They'd already started therapeutic iron doses and they moved him to the intermediate care unit so they could administer vitamin K.  His gastroenterologist says that it is a really low likelihood, but wants to try him on a trial of Neocate to make sure this wasn't protein intolerance on top of reflux causing malabsorption.  He was not presenting like a protein intolerance kid at all (no mucusy stools, no congestion, has never had an ear/sinus infection and doesn't have dermatological symptoms), but since his big brother did have multiple protein intolerances, seemed worth trying.  I got told to keep pumping though because he was almost certainly going back to breastmilk.

Can we go home yet?

That was Friday.  They said that if he responded well to the vitamin K and iron, they would discharge him Sunday.  Saturday afternoon he pulled out his IV and despite having the charge nurse, an NP from the PICU and the hospital manager all try, they couldn't get an IV started on him.  They declared he could have his last two vitamin K doses as shots.  This also resulted in another move change as he no longer needed to be in the intermediate care unit and so they took him up to the hematology floor.

Why are you waking me up in the middle of the night to change floors?

I was supposed to have left town Friday for a conference, but I had rescheduled my flight to Sunday mid-day.  They drew blood early in the morning of Sunday, but when it came back he was even more anemic (6.1 hemoglobin) and his reticulyte count was worse rather than better, so they decided to do a blood transfusion that afternoon.  I still left.  I knew Paul was competent.  I knew the kid was stable even if in need of medical care.  I knew they had a good plan, but it was still one of the hardest things I've ever done.  I actually semi-cutoff someone at the Parking Spot and ended up in tears as I apologized to him!

Getting transfused.  This is the picture Paul sent when my plane landed.  Did not help with my guilt!

They did the blood transfusion and it was amazing what the impact was on his energy and attitude.  Happy baby with color in his cheeks!

This has rambled much longer than I intended, so I should probably find a conclusion.  He was discharged the day following the transfusion.  They decided that there likely was an element of protein intolerance and so left him on the Neocate.  Neocate and the end of breastmilk are worthy of their own post, and hopefully I'll write it.  We went to the gastroenterologist Monday of this week and he'd gained three ounces that week which is HUGE in a kid who had not gained weight since the beginning of August.  And Monday his hemoglobin was 10.8 and hematocrit was 33.8, so much improved on the anemia front.  They will repeat those tests in three weeks along with rechecking the prothrombin and other clotting tests.  For now, we see no therapeutic reason to do the scope, so we are putting that off as well.

His gastroenterologist seems a bit frustrated and not necessarily convinced that he's got the whole picture completely figured out, but my philosophy is that as long as we can find actions to take that get him back on track to gaining weight and keep his blood from getting out of whack again, that's good enough.

And that's days 54-59 of hospital stay for a 274-day-old boy (as of today).

Feeling much better!  (Big brother is exploring Chiron's temperature using himself as a control)

Random Tidbits IV

Oops, Trajan's birthday party got me distracted and so I stopped the habit of posting and then I had two work trips and Chiron spent a week in the hospital, so it's now been over a month.  Oops.  And instead of a coherent summary or tale, I'm just going to do the little thoughts that are in my phone's notes and voice memos.

I imagine I will always think of her.  Whenever I am sitting "bride's side".  Whenever I see sass in a young girl.  In the couple seconds after I answer the question of how many kids I have.

Trajan: "Did you go the right school to be a mommy?  I go to teh right school to be able to be whatever I want."

It's disturbing that my four-year-old understands the concept of death more clearly than a restaurant closing.

Odd moment of joy that my phone corrects og to of instead of OG now.

Chiron now weighs a stone.  He is also now on Neocate instead of breastmilk as of the end of his hospital stay.  I am tapering off of pumping as a result (I considered pumping just to donate, but it's such a significant time commitment and I'd like to be able to take a Tylenol, so I decided to retire).  Bonus trivia fact: I've pumped over 90 gallons.