They're Alive!

One with a heartbeat in the 150s and one with a heartbeat in the 160s.  One measures 9w5d and one measures 9w4d.  There being so similar in size in all four ultrasounds and staying so is a really good thing.

The shot of the ultrasound might be odd to you, but this is my friend the quickie ultrasound.  Since you can't distinguish between the heartbeats of two babies, my practice does a quick ultrasound each appointment to confirm cardiac activity. 

Next appointment is in 2 weeks and also going in for first appointment with the perinatologist around that time.  My OB actually offered me either 2 or 4 weeks.  I said 2 and then said that perhaps 4 would work since I was seeing the perinatologist, but she said I might as well just do the 2. Blood pressure is improving in their office as well, was only 135/78 this time!

Now for a real leap of faith, I think I need to tell my boss.

I actually do not have an impessive bump at this time, contrary to popular belief regarding back to back twin pregnancies.  But, I still think it likely will look comical at some point with Chiron's diminuitive size.

Here's baseline:

Some pudge, but not bump per se.  Oh, and this is about 8 weeks pregnant on the last set of twins.  I do NOT have any pre-pregnancy shots at all this time, since this is a bit of a surprise. 

Here's almost 22 weeks pregnant with twins last time:

And here I was this time at 8 and a half (this was December 30):

The nurse noted this morning that I'm out of the pelvic girdle as a uterus already, so I think my uterus is on a rubber band.

I'll try to remember to take a shot in the next day or two just for giggles.  I'm guessing it'll be at least another month before will qualify as a bump.

Also, aren't we all proud of myself for being willing to consider a month from now?  And I was flatout assuming they'd be alive, I really think I've made great mental progress.  I know I've been mainly mocking it, but I think I really am coming more to terms with things.  The only bad side of that is once I really get my mind wrapped around the pregnancy, I'll have to start thinking much more about logistics.

One last OB note: she also told me today that 37 weeks is the farthest out that we are willing to consider.  In my head, I already knew this, but was thinking 38 or even 38 and change where she said 37 is the farthest.  She did follow it up with "even if a bit earlier than that, we will still be a lot past 29!"  It's such a hard balance between the safety of removing them and the risks of gestating outside of the uterus.  But twin pregnancies have a bad rap for cords and placentas anyway, so I think I'm ok with this idea of early even if it ends up meaning some NICU time for babies who appeared to be doing find in-utero.  Also, she hasn't said it (in fact she said she'd call it 50/50), but I feel pretty certain I'm earning myself another c-section.

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:

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

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. 

Where's the Other Shoe?

This little guy is doing so well, but I find myself looking for another shoe to drop.

Even before he was born, from the first conversation with a neonatal nurse practitioner while they were stopping labor at 24 weeks, we were told to expect a roller coaster. Ups and downs. Rises and falls. Two steps forward and one step back. With the possible exception of going on a ventilator for six to eight hours when he was 12 hours old, he hasn't. And really, can you call a 6-8 break on an ET tube a step back at that point?

At his six-month-old appointment, his pediatrician said he was on track for his actual age, not adjusted. I was tempted to argue that he still had six more months before we drop adjusted. The only thing he wasn't doing was showing signs of readiness for food, but given his reflux, we would be waiting a bit anyway probably.

The reflux isn't the other shoe, at least not for me, because his full-term brother had the same issues plus protein intolerances in his case.

I found myself hunting for things wrong with him in the first few months home. We actually ended up at a physical therapist because I noticed him turning his head to the right more than to the left. The physical therapist said that yes this was true, but I had caught it so absurdly early that with just a few stretching exercises we were able to nip it in the bud.

When he had been home a bit we saw the other pediatician at our practice and she thought the grade of his murmur had increased (comparing versus written notes since she hadn't seen it before), so we got referred to a cardiologist with an immediate appointment. The murmur was shown to be a benign increased flow outside the aorta. Not only that, but as of about two months ago, they can't even hear that.

He hasn't had an eye appointment in months, and so I wonder if the shoe is going to be at his appointment in October. But when I think honestly, I don't think that would be a shoe. Based on what they said at his last appointment, the worst we are looking at is glasses. Not a shoe in my book.

From talking to other parents of preemies, it seems that there is always a shoe. Some either short-term high-magnitude event or some life-long issue that has to be dealt with. Maybe it's eating issues and problems with textures. Maybe it's cerebral palsy. Maybe it's poor muscle tone. Maybe it's cardiac issues. But I haven't found anyone without another "shoe".

Is it possible that there's not a shoe? What age should I really stop looking for a shoe because most of them will have landed? Is it an age? Is it meeting milestones like walking and talking? Is it possible that developing the last ten weeks in change out of the uterus and six weeks before that in a still status without really working the vestibular system could really not matter?

In case it isn't clear, the first shoe was the event of the premature birth.

Last thought, I don't want to credit a shoe improperly. Like the reflux, that's not a product of his premature birth. I do know from friends and acquaintances that there can be a tendency to attribute anything that turns up to the premature birth. So, while I may be looking for a shoe, I'm going to continue doing my dangedest to know Chiron for Chiron and not for his premature birth, because it seems the most likely shoe would be me handicapping him by continuing to see him for his prematurity and crediting him for his survival rather than demanding things of him that I would otherwise.

I'm not sure that made sense...



Gratuitous Nursemaid Puppy Picture One - Chiron



Gratuitous Nursemaid Puppy Picture Two - Trajan

Gratuitous Nursemaid Puppy Picture Three