“Psst… got some breast milk, step into my alley”

I’ve got an oversupply.  In the time since Chiron was born, I’ve fed a stranger’s baby from an hour away who needed to fill a temporary lull in supply, I don’t know how many numbers of babies in the NICU or with prescriptions through my almost 20 gallons worth of donations to the milk bank and one baby who was born “too old” to get donor milk in the NICU whose mother really did not want her to have formula and whose milk came in slower than what the NICU wanted for her daughter’s intake (this was done completely under the table, i.e. she labeled it as her own).

I’ve been kind of hush-hush about this, but suddenly it hit me that I had no idea why I was!  Or why I was relatively (for me) hush-hush on the whole topic.  We don’t bat an eye at cow’s milk, why should breast milk be a big deal?  I am blessed to have an oversupply in that I CAN help others.  Why not celebrate and embrace this?

Similarly, why is breast milk a biohazard whereas spilling cow’s milk would just be an annoyance or a mess?  Only thing I can come up with is the slight risk of communicable diseases?

We have two friends who moved to another part of the country a few years ago.  They have a daughter who was born just a little after Chiron (full-term), and while the mom is supplying most of the milk their daughter needs, her supply just isn’t quite keeping up with the demand.  From Facebook she knew I was donating to the milk bank (see the relatively hush-hush comment), so she sent me a message that rather tentatively asked if we would consider sending them some of our excess if they’d cover the costs.  I hate that this was tentative.  Knowing that I had an oversupply, I wish she had been confident that we wouldn’t see this as a weird request and would be eager to help and share. 

Why is milk such a taboo?

As part of my answer to that, I must admit that I am a hypocrite.  I avoid discussing this topic, and in particular pumping, at all costs with my boss.  Actually, despite pumping with both pregnancies in the office, I have never once discussed it with him.  I just flip the lock on my door and shut it.  In fact, we have a conference coming up in a couple weeks and while it is in town, the hours are long enough that I absolutely will need to pump while there, so I have booked a room at the conference hotel.  I feel confident that the firm would reimburse for this (though perhaps ask that I attend the hospitality suite as long as I have a room there), but I’m so hesitant to discuss it that I’m considering just eating the $170 or so for each of the two or three days.  Sigh, I really think I need to man up on this.  And I’m this level of a hypocrite with a great firm behind me.

Similarly, I forgot a cooler this morning, so I ran home to get one.  It did not even cross my mind to just store them in the refrigerator.  Albeit, I live about a mile from the office and I needed to go home to trade cars with Paul at some point during the day anyway, but what amazes me is that I honestly didn’t even think of the possibility of getting through the day without a cooler until I was driving to the house.  I could easily have grabbed a grocery sack from the stash in the kitchen and stored the milk in the refrigerator.  But I didn’t.

My honest guess is the hush-hush nature is the result of two things.  First, it is a bodily function/fluid and generally we don’t discuss those much in society.  And second, it relates to BOOBS.  OMG, I just said BOOB.  BREAST, hehehehe.  I don't think wetnurses were Ishmaelites though, so it can't have always been this way.

So while I get it, I think perhaps we should get over it.  While it might be a bodily fluid, it’s also a food option for babies.  There is no problem talking about formula, so I’d like to see that courtesy extended to breast milk.  Perhaps even more so, because in some cases breast milk can be a life saving alternative to formula such as where it prevents the development of necrotizing enterocolitis in micro-preemies!

I’ve got no plan to make this happen other than to try to cut back on my own hush-hush behavior.  And honestly, I’m labeling that as “try” because I’m not sure I will pull it off. 

Random Short Thoughts

• I heart Trixie Tracker.  Main reason is for the pump logging, but the sleep and intake/output logs are definitely useful as well. There are definitely some things they could do to improve and clean it up, but it's good enough to justify my use already (even after the free trial ended!).

• What's the likelihood that both the delivering obstetrician (my actual one :-) ) and the last antepartum nurse that I had (who administered the last Terb protocol because L&D was full) would both be named Felicia?

• My phone is back to correcting og to of instead of OG and this makes me smile.

• Chiron's appearance no longer hints towards an alien chimpanzee and really not even so much a chimpanzee at all anymore.  He was cute as heck, but definitely open for a bit of humor.

• I was looking at the few posts here and it seems disproportionately shifted towards Aurelia.  That's not because it's the focus of our lives, but because she does only exist in our minds.  The boys are a part of our every day.  That said, I'm working on something as a followup to a conversation with a friend that is Aurelia based.

• On that note, I was told to guard myself against twins, but they haven't ever bothered me.  Saw a bunch in the NICU and seem to see them nearly daily.  I would say I'm more cognizant of them, but not bothered.  However, this did upset me a bit, proving that I'm totally random.  Just a moment of pause, but enough that I noticed it.  They are cute as heck though, so go look.  These lions were born the day after Chiron and Aurelia.

• Wonder if there is any developmental effect on Trajan of all his work with breast milk.  How many 3.5-year-olds can assemble a breast flange including the membrane and getting the tubing in?  Know the location on a breast milk storage container where the NICU likes the label to be placed?  Practice their counting by putting 20 containers into each bag for breastmilk drop-offs to the milk bank?  He really is helpful though and it is great because it gives us something to work on together that also gets something that needs to be accomplished done.

• I really want breast milk to be one word instead of two.

• How does my boss magically know just when I have hooked up the breastpump two minutes before?  And then I can't bring myself to bother to set up again, so just stick with the partial pump.  Oh well.

• Maybe I should be worried about my development instead of Trajan's considering how much time I spend thinking about breast milk!

• On a final random breast milk note, Chiron actually ate enough at the breast yesterday to need no top off and to leave over a 100 mL deficit in my pumping on that side!  Woot :-)

Accomplished or Closure

It's amazing how getting something done leaves you feeling accomplished.  I ordered four dozen cookies each for the NICU, the 2nd floor maternity staff and my OB's office as well as a bouquet of flowers for my OB's wonderful nurse who drove me to the perinatologist when the demise was suspected, stayed with us during that exam and just provided support and help that was well beyond the call of duty. [She actually was even late to a doctor's appointment of her own because she stayed with us at the perinatologist]

It's an odd feeling of completion.  You would think bringing the boy home would have, but somehow thanking some of those people who were so critical to the entire process feels like the moment of closure.

Lake Austin Sunset is what they call them...

A sunset seemed fitting.  Cookies are less "fitting" and more tasty and able to have delivered around shift change!

Hospital Bedrest

If you have to be on true full bedrest, I think hospital bedrest is the way to go.  It's much better than home.  Main reason: people VISIT you when you're in the hospital.  Never had a day where I didn't have plural visitors and this included three visitors from other hemispheres! 

Not to say that hospital bedrest is glamorous, but it at least is interactive.  And another plus relates to the older kid.  Being at home on bedrest I am pretty sure I would be getting myself into trouble doing things related to the older child whereas in the hospital it was special time for both of us every day when he visited.  We had special hospital toys, games, books and more and I was able to really spend good quality time with him without compromising my medical restrictions at all. 

Just for my own memory, here's the basic hospital schedule:

4:00 - vitals

Wake up between 4:30 and 6:30 depending on which doctor was on call and/or noise level from the nurses at the end of night shift.  There was a cabinet that had doors that opened into my room as well as into the hall on the other side.  This cabinet is where they kept the chart, so often my waking up occurred whenever the night nurse went to get my chart to do her charting.

7:15 – Breakfast

8:00 (or whenever workload permitted the day nurse to make it in) -Morning assessment and one-hour non-stress test aka baby chasing

09:00- morning meds

10:30 - Priscilla, the food hostess, visits!

12:00 – lunch! And vitals

15:30 – Priscilla visits!  (Ok, it was only Priscilla 5 out of 7 days, but as Priscilla was one of the high points of the stay, I chose to remember her.  Actually she was such a wonderful feature of my stay that it is probably worthy of a post of its own.  Excellent policy Seton!)

16:00 - Vitals

17:30 - dinner

19:00 – evening assessment

Shower after fetal heart tones but before meds

20:00 – meds and vitals

22:00 or so – read and go to bed

00:00 – vitals

There was also a visit every day from an obstetrician.  If it was my actual OB, it tended to be around lunch time with the other eight typically coming between 5 and 7:30. 

I was lucky enough that I was able to work from the hospital, so I had a printer setup in my room and had Clear Wireless on my laptop.  I typically would work from about 5:30 to 7:00, then again from 9:00 to noon, then 1:30 to whenever Trajan got there and then one last bout from about 9:00 pm to 10:00. That doesn’t add up to as many hours as I did most days, but it’s close enough.

I also got a visit from Trajan every day either after school or at dinner time or most anytime on the weekend!  And every day I was blessed enough to have visits from at least a couple friends.  And my mom and Paul were both hard core enough to visit every day as well.

160 Medical Professionals Baby

A friend called Chiron the million dollar baby the other day (I think it's actually just in the 900Ks), but I don't think that is the number that best tells the story of his birth. I prefer:

9 obstetricians
3 perinatologists
30 antepartum nurses
14 labor and delivery nurses
1 anesthesiologist
15 clinical assistants
1 postpartum nurse (had had all the others as antepartum)
12 neonatal nurse practitioners
6 neonatologists
45 neonatal nurses
4 neonatal clinical assistants
3 radiology techs
7 respiratory therapists
4 occupational/physical/lactation types
1 pediatric opthamologist
1 hearing test technician
4 chaplains and social workers
160 itemized

Another few dozen stocking, housekeeping, food services (including the amazing Priscilla), pharmacists, lab techs and physical plants types.

And just as critical, approximately 200 friends and family providing all kind of support and help.

[if we add the thoughts and prayers, I know it is in the thousands from friends' prayer circles, lets say 3000?]

So, instead of the million-dollar baby, I propose the 160 medical professional baby or the 3,396 plus "village" baby.

"Bite Me"

Trajan has been bitten reasonable regularly since he was about six months old, apparently he bears a sign saying "Bite Me" somewhere that only kids can see.

 At his first daycare, the kid he played with the most bit him about daily from around six months to two years.  It was to the point that the daycare basically asked us if we were okay with the other kid remaining enrolled.  He never bit hard and Trajan loved him, so our answer was yes.  He got bit by some other kids, but on more of an occasional basis.

Then we moved on to the spanish immersion preschool when he turned two.  He didn't have one regular biter there, but a number of kids who bit him when they went through a developmental phase.  "I'm considering biting someone, you look good!"  There were a couple times that he provoked the biting by grabbing a toy, but typically the teachers could not give us a good explanation for why it happened or what he was doing to provoke it.

I say he hasn't ever bitten anyone, but that's not true. He bit Paul on the shoulder about a year ago and just two weeks ago did this number on my arm through a sweatshirt.

He immediately released my arm, said he was sorry and then began to sob something to the effect of "my teeth did it!"  I barked, "no, sir!"  I figure for the range of possible reactions, that wasn't too bad! This picture was four or five days after the event.

What provoked this post is the new kid who was added to their class in October or so has taken to beating Trajan up.  It started with a scratching to the face that left him with a cool sword fight type cut under the eye.  Then last night I made him take off his shirt before drinking some hot chocolate and was shocked to see I substantial blue bruise between his shoulder blades in a perfect bite shape.  It was this kid again.  This kid is at least 3.5.  Am I wrong in thinking this should not be happening?  I don't care what he did (in the past when I've asked about events with this kid I've been told they were unprovoked, so I tend to believe Trajan's version).

We have a teacher conference next week (we missed the one for last trimester because we were at the peri getting the fetal demise diagnosis instead) and I'm thinking this is something that should be addressed. I know for privacy reasons, they can't acknowledge that it is this kid who keeps injuring Trajan, but they should still be able to deal with it, right?

And for a last "moment of zen", the joy of a boy and a dirt pile (we are getting sod and some other landscaping work):

They wrote her name in the sand...

Somewhere in the blogosphere I came across To Write Their Names in the Sand and without too much thought, I filled out a request form. Amazingly quickly, some people I've never met nor spoken to in Australia took a beautiful sunset and wrote Aurelia's name in the sand.




She is real. The title of the book An Exact Replica of a Figment of My Imagination pretty accurately fits my thoughts. Real enough to matter enough to someone else to write her name. I'll add the image to this after they process our donation.

Due dates really don't matter, and especially for those who are part of a multiple birth or who die before they are born, but somehow it getting written right at the time of her due date seems right.

Trajan as a Brother

I think I’m right.  It’s the habit of writing and thinking that needs to be developed.  If I have that down, I can fiddle with figuring out how to incorporate pictures or select colors or things like that, but there is no reason to improve the aesthetics is there aren’t going to be any thoughts.  So, I am going to attempt to just build a habit of writing.

Today’s thought: the awesomeness of Trajan as a big brother.  I’ve been firmly convinced for a long time that Trajan is a pretty cool person, but it’s been wonderful watching him in the role of a big brother.

The day they were born (December 23), Trajan was in Dallas to go to a couple of Christmas parties there before coming back to Austin.  He chose to head back immediately to meet his brother and made it to Austin about three hours after Chiron and AUrelia were delivered.  He must have scrubbed in a minimum of seven times that day because he kept going back to the NICU to ask more questions. Bless the patient nurses who explained grounding and the different color wires on Chiron's monitor leads.  The picture above is from December 24.  I was amazed how well Trajan followed the nurses instructions about how to touch Chiron without overstimulating him.

Trajan had come to the hospital daily during the six weeks I was there before they were born, and at first he seemed to want to do this while Chiron was there.  However, there isn't really much to do in the NICU and being closed from 6:30-7:30 really puts a damper in a preschoolers schedule, so we convinced him to just visit on the weekends.  But he did ask about his brother every day.  He also wanted to help with preparing and labeling Chiron's milk.  If Trajan was awake when either Paul or I was leaving for a hospital run, he always asked us if we needed to take milk.

Now that Chiron is home, the first question every morning seems to be related to where Chiron is.  And Trajan's just been sweet, gentle and helpful.  Yes, he still is a boisterous, energetic three-year-old, but he is a caring and careful brother.  "I washed my hands, can I touch him?" 

One evening, Chiron was in a bouncy chair in the living room while Paul was cooking dinner and I was cleaning up.  I went to go check the mail and Gretchen, our younger Irish Terrier, apparently went over and was licking Chiron's face which disturbed him.  Trajan moved the pack and play and a number of his toys to create a buffer around Chiron so that Gretchen couldn't get in!  Smart and helpful!

One last aspect of his brotherhood is Aurelia.  No one else mentions her.  To Trajan, she is as much his sister as Chiron is his brother.  When people ask him about Chiron, he always mentions Aurelia.  I have trouble using her name instead of referring to her as the girl or something similar, so Trajan using her name helps me. 

Love you big boy.

Per Trajan

Heliphones- headphones
Bizzert-dessert


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Taking in the World

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After dying, before being born

It is wrong to die and then be born.

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

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

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

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

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

Posting Habits

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

Quick thoughts of things I could/should explore:

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

Relative size

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

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

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



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Simplifying domain name

wileydise.blogspot.com is much shorter than justanotherdayinwileydise.blogspot.com, so going to make that little change...

Superstition

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

Now I pretty much believe in tempting fate.

On December 21, I wrote:

Another 39 days and we would be 35 weeks. Not trying to put the cart in front of the horse, but I'm cautiously optimistic.

50 hours after I posted these words, I was being prepped for a c-section.

36,3/6.5 weeks old

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

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

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

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

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

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

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


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29 weeker

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

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




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24 hours without using an NG tube!

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

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

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

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

No pressure buddy, but great work!


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Quick thought

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


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Location:N Lamar Blvd,Austin,United States

Attitude Matters...

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

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

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

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

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

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