Frustration

We had our Perinatologist appointment today.  The ultrasound had the same measurements as this past weekend at the hospital - no surprise since the visits were only a few days apart.  Head circumference still pushing 41 cm and BPD still 11+cm.  To clarify for those who may not be familiar with head circumference measurements, etc.. the cm does not equal weeks of gestation.  An average newborn has a 34cm head -- so with 41cm, Meagan's ultrasound isn't even registering gestational age anymore because it's literally "off the charts." 
Her abdomen is still small - now measuring about a week and a half behind. I'm not "too" concerned since her limbs are still right on time, however, it is a little concern to watch.  I want to make sure as the weeks go on that she's not developing an IUGR issue in her body on top of the fluid increasing in her head. 

Meagan was pretty quiet in the ultrasound today.  Her heartrate looked good, cord blood flow looked good, etc.. but she wasn't very wiggly.  She gave one or two kicks, but other than that stayed very quiet.  This doesn't 'worry' me, per say, but, it does catch my attention.  She is normally a nutty baby, so when I see her so quiet through a 25 minute ultrasound, I do take note.

A good thing was we saw her chest/lungs moving  A LOT.  Everytime they scanned her body, you could see her diaphragm moving in and out, up and down.  These are GREAT signs for her 'practice breathing'... This is important because if we are talking about an earlier delivery, we want her lungs to be as mature as possible.


Now for the frustration: the doctor thinking he knows what is best because he's going by 'standard procedure'.. instead of listening to us and trying to discuss a compromise.  The information he goes by is basically: measure the head, measure the remaining mantle tissue (remaining brain matter), and if she seems 'ok', press forward to a 38+ week delivery.
I take ALL that information to heart - however - I also factor in things like: personal stories from several other Hydro families  (which are invaluable since doctors don't know much about the condition's progression or prognosis), how other Hydro babies are doing and what their measurements and gestational ages were at delivery, what we have reserached about Hydrocephalus, what we have researched about enormous head size and developmental delays, how I'm feeling, my contractions, my 'gut' feeling. 
These all need to come in to play when talking about Meagan's delivery. 

We went in with a few basic goals:
1. Talk about steroid shots - whether a planned earlier delivery or not, I'm feeling very "at the end" in my body and in case my water breaks or I do go into unplanned labor, I want her lungs to have as much help as possible.
2. Talk about earlier delivery. Nothing crazy - nothing irresponsible.. but weighing all risk factors, and all risks of her condition, moving up delivery 1-2 weeks so we can get that shunt in sooner than later.
3. Talk about my on and off contractions I have everyday - coupled with my history of fast labors. The last thing I want is to truly go into labor, her have no shots, and also be completely scrambling to set up everything else, when we could possibly avoid all that by planning out a slightly earlier delivery.

We started our talk with the doctor by mentioning the steroid shots. The doctor was very adament about not doing so.  When we asked why, he said because before 38 weeks the baby just isn't ready.  Ok, I get that.  If someone is just "tired" of being pregnant, that's silly - don't ask for steroids to help the lungs along, and don't deliver before 38 weeks.  However, we're talking about our daughter's brain here. Her head. All we were asking is to prep her lungs for a 'just in case' scenerio (which is NO harm to her or me), and to push up her date a week or two - not asking for some crazy early delivery.
Considering her Hydro condition, when she is delivered honestly takes a back seat in our opinion. Yes, we want her to do ok in surgery. Yes, we want her to have mature lungs. BUT - it's really a toss up in Hydro.  Do we just wait it out and chance her head getting to an astronomical measurement? Do we push for earlier and have her chance more breathing or eating issues? To be quite blunt, breathing and eating issues are pretty much at the back of my mind when I think about her mental development.  It's that fine line of waiting.. but not TOO long where we set her back another 3 steps because we just let her brain sit in a ton of pressure for 2 or 3 extra weeks. And this is why we thought a responsible compromise would be steroid shots and testing for lung maturity.

We then brought up this very issue: doing steroids, and then testing her lung maturity with amniocentisis. This way, we didnt' deliver before her lungs were mature... but also just didn't 'wait it out' unprepared if she came earlier. If her lungs showed ready before 38 weeks with one of the amnios, then we asked about delivering at that point to save her head from going through anymore growth.  The doctor was still negative.  He talked about Amnio having a risk of starting contractions, and if she wasn't ready, we'd be delivering her anyway if it put me into labor.  There was no reason, in his opinion, to check for lung maturity.  Really?? How about so that shunt can get in her head 3 days, 7 days, 2 weeks earlier? That DOES make a difference!

At this point I became very frustrated. Sooo, let me get this straight.  For about 7 weeks, from 21 weeks to 28 weeks, we got hit with the termination question EVERY time.  Yet now you, Mr. Doctor, are going to actually give a care about delivering at 36 weeks vs 38 weeks because it could "endanger her health."  And let me ask another thing - at 21 AND 23 weeks, you heavily pushed us to have an Amnio.. because, and I quote "there could be something genetically wrong with her."  When I asked him then about the risk of contractions/inducing labor with an amnio at that time, he said literally "oh it's such a small risk and it's important to know her genetic make-up." (which was another way of them saying "...because if there is a genetic problem you can still terminate.")  Yet, now, us asking for her to have an Amnio at 35 WEEKS pregnant to check lung maturity is somehow "too risky because amnios can cause contractions."   Way to give conflicting advice -- not to mention his earlier advice DID in fact risk her life because it was early on before viability. If I were to randomly go into labor at 35 weeks from the amnio, it's not as big of a risk factor as if I had at 22 weeks. He made absolutely NO sense in his reasoning. (probably because those of us that keep these babies are such a PAIN).

Brian could tell I was getting very heated and flustered with the doctor's nonsensical answers.  Normally I'm the one who has to push for stuff - fight for what we know is right... from medical opinions, down to silly incorrect food orders and the like. I'm the strong one. I'm the "pusher."  But I was done - I was so spun up over his unwillingness to even LISTEN or work with us on this, that I was too upset.

At this point, I must say, I was VERY proud of Brian.  Mr. "Laid back, take in the information" man (which is great because we balance each other out)... suddenly turned into a grilling prosecutor.  Brian sat forward and the conversation went something like this:

Brian: "Ok, so if we get the steroid shots, there is no harm done.. even if we DO go to 38 weeks, correct?"
Dr: "Yes"
Brian: "Ok, so we get the shots. And if we do get the shots, why not go ahead and do an amnio a few weeks from now to see if her lungs are ready. That's logical, isn't it? Because the main concern, for BOTH of us, is her lung maturity before delivery?"
Dr. "Yes"
Brian: "Ok, so if your amnio results show her lungs are ready at 36 weeks, then there is no reason to wait another 2 weeks, to 38 weeks, as it would only result in her head growing that much larger; therefore making surgery to my wife riskier and more involved, and making Meagan's development possibly 10 times worse?"
Dr: "Well, we would still want to wait until 38 weeks to deliver..."
Brian: "But if the issue is lung maturity,as you have said, and the amnio results show her lungs are ready, then if that time is at 36 weeks, we should press forward with delivery as then the focus shifts to getting her out to start relieving that fluid and saving brain matter."
Dr:"Uh... "
Brian: "So we'll go ahead with the amnio at 35 weeks."
Dr: "Uh, yes, that will be ok.  We'll do the amnio after your next visit."
Brian: "...and if the amnio results show her lungs are ready... we'll..."
Dr: "talk about delivery that next week?"
Brian: "Excellent"

LOL ... I had to laugh a little, as mad as I was.. because he basically had the doctor talking in circles... and eventually, whether out of confusion, or out of the doctor himself realizing he was making NO sense, he agreed to at least re-visit the idea when I go back for my next check up.


Thank you Brian for sticking up for us and for Meagan and what's best for her. 

We made our way to the nurse's station, I got my steroid shot, and will get my second tomorrow after my OB appointment.

I go back in two weeks, at which time I will be 35 weeks 5 days ... I'm praying Meagan keeps doing well, and I'm praying she shows everyone, including that doctor, that her lungs are mature enough at that time to deliver.  The poor kid already has enough going on with her head size -- why a doctor would initially refuse steroids, refuse lung maturity amnios, and let her "sit" for FIVE AND A HALF more weeks is rediculous.  If we can help her along, and test for lung maturity, so we can avoid delivering her with an adult sized head... who wouldn't want to do that? If the goal here is truly to help her the best we can, sometimes that means weighing one risk against another - and as her parents, we put her brain first.  To the doctor, we're just "that couple" that kept "that baby" and there is no advocacy there on Meagan's behalf - which is the very person we ALL should be focused. on.

Quite a frustrating day, but, thanks to pushing back, and for a husband who took over when I was too tired to go any more, it seems we at least got part of our goals accomplished.  Parents out there - fight for your kids. I have a great respect for the medical field and doctors - without a lot of what they do, Meagan wouldn't even have a chance.. but.. they don't always  know best.  You have to trust your instincts based on facts and information from other families who have lived the same thing to truly get what is best for your child, especially in conditions like Hydro. 
Meagan - we'll keep fighting for what is absolute best for YOU... don't you worry.