Wednesday, September 28, 2011

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

Monday, September 26, 2011

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.

Friday, September 23, 2011

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.

Thursday, September 22, 2011

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)

Tuesday, September 20, 2011

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.