In Which Mama Bear Gets It and My Wonderful New Doctor Blows My Socks Off

Well...  since that last post the whole 'where will the baby come out?' discussion got a little more interesting.  I started to wrap my mind around the hospital my (original) doctor had mentioned. The one that seemed so very far away for a delivery at 1 hour and 45 minutes away from us.  I did what I do and I Googled it and I saw the birthing suites and read about the ICU and NICU (which I really shouldn't need, but is still the mark of a higher-level hospital) and I thought, "Ok.  I can do this."  This could be ok.  And I started to settle  my mind into it.

I went swimming with Carolyn that Friday, did some laps myself, and was feeling pretty good when I walked through the door to see a message blinking on my answering machine. 

It was....  The University of Washington.  In Seattle.  The SUPER hospital.  You might remember that this is the place where we went to visit Dr. Crazy Hair and the Grey's Anatomyesque Intern and Resident.  And when THEY call YOU you know there's some business going down.

This phone call indicated that I was to call back regarding an appointment that had been scheduled for the following Monday...  The person on the answering machine indicated that she and I had already discussed this appointment, but I had never talked to the woman before...  On top of that, I certainly wasn't expecting my care to be at UW.  This was most certainly another curve ball.

I called back and got the pertinent information.  I found out my appointment was scheduled with a doctor who follows High Risk pregnancies (Translation for the Grey's fans: They sent me to Addison Montgomery) and that I really had to make this appointment because (as if I hadn't noticed yet) we were in the eleventh hour here. 

And at the word 'High Risk Pregnancy' coming from the lips of a person at UW, my Mama Bear heart skipped a beat.  Of course it wasn't the first time I thought about the words...  It's been on my chart for some time.  It's the reason I met with the grumpy anesthesiologist at the Naval Hospital.  But remember in the span of a week and a half I had gone from everyone I talked to saying, "Eh...  No big deal on this delivering of the baby thing," to....  an ASAP referral to the REAL super hospital in Seattle's version of Addison Montgomery.

Let's face it, I've watched enough of Grey's Anatomy and Private Practice to know what kind of cases those doctors take on.

So.... I got a little bit scared.  At the same time, the sinus infection I'd mentioned in the previous post got a lot worse...  and my ear started to hurt...  and all of my attempts to stay in control of my physical and emotional feelings were just plain shot.  Being sick plus processing all of the new curve balls that now had to do with my pregnancy and therefore MY BABY just....  wasn't going well.

And lo....  I was a total basket case. 

Monday came and Andy and I made the trek down to Seattle.  I was a nervous wreck.  I was a bundle of questions about C-sections and Inductions and 2+ hour drives to deliver a baby and worries about whether or not I would feel comfortable with this doctor. 

Finally, we met her.

And I fell in love.  Commence the newest Doctor Crush.  Can she be my new best friend?

Her staff was wonderful.  Her nurse hung out with us for a good 15 minutes quizzing me about Tomas and telling us how things worked when you hatched a kid at the UW.  She was delightful.  And then the doctor walked in and answered all of my questions before I could even ask them.

She said at one point, "I'm going to throw you a curve ball."  I almost fainted then and there because I didn't think I could handle any more curve balls especially the kind that might come from the UW equivalent of Addison Montgomery.  Andrew started reaching for the tissues on the counter and I warned her that me and Curve Balls were not friends right now.

Then she said, "I know everyone has probably been talking about C-sections with you...  But I'm not sure that's the right way to go in your case.  I'm not sure that would actually be LESS stressful for you and baby in the long run." 

And that's when I got really Gooey-eyed about My Wonderful New Doctor. 

She took us through a potential plan that would involve a planned induction (with a delivery 2+ hours away from home, there's just really no way to get around that at this point), but would not necessarily have to involve a C-section.  (It will probably, however, involve a *really* good epidural and a Season or two of Bones).  Now don't get me wrong, I'm NOT down on C-sections.  But I would like to avoid one if at all possible because I've got a lot coming at me in my recovery period and I already have at least one and possibly two surgeries looming post baby arrival (thanks to good ole Hermione) and besides I just plain don't know what to expect within the realm of C-sectionness.  I've had two non-medicated births that came about 'the more traditional way,' and I have a lot of anxiety about the C-section possibility and how I would handle it (mostly in regards to the recovery period).

This plan is not set in stone.  We'll find out more about whether or not it's a possibility at our next appointment on Wednesday when we'll again see My Wonderful New Doctor as well as an anesthesiologist.  The anesthesiologists hold the magic fairy dust to keep all ok in ANY strange event that Tomas might cause and they are key players to this delivery.  They have to be on board with My Wonderful New Doctor too. 

But just knowing that she was open to other possibilities was so comforting.

I left feeling GOOD about about going to UW for baby's arrival and feeling WONDERFUL about My Wonderful New Doctor. 

Incidentally, I got a phone call from the referral powers that  be at the Naval Hospital later on in the week.  I had called my doctor, trying very hard not to cry, after making the initial contact with the folks at UW.  I asked him why I was being sent to a Super Hospital instead of the "Medium level hospital that is closer with an ICU and everything he said I really needed."  He said he'd ask the folks in referrals. 

They called to explain that they'd been trying to get me in to said hospital (to which I nearly burst out with, NO!  DON'T! in light of My Wonderful New Doctor) and....  They wouldn't take me.  I'm too weird.  I make them too nervous.  They consider my oddities to be too big of a risk for them.

Then I thought--the meeting with the grumpy anesthesiologist was not so fun...  And the feeling that no one out here had my back until the fabulous folks at NIH stepped up for me was awful...  And switching at the eleventh hour from my doctor who has been so wonderful through this whole process is really a bummer....  And the prospect of giving birth 2 hours away is inconvenient at best and anxiety producing at worst....

BUT how scary is it that unless those questions had been asked, that I could have given birth at our little Naval Hospital when the folks down the road, which are considered to be more than a few steps above our little hospital, consider me to be too high of a risk and would only refer me up to the super docs?

At that point the Mama Bear who had previously only been scared out of her mind at the words 'High Risk' in conjunction with this pregnancy suddenly became just really grateful that I was going to the very, very best place around for world class care for this little cub and me.   

There's a 99% chance that we don't need to be at a Super Hospital and that all the extra precautions and resources that will be available to us won't be needed in the least.  But if that 1% fluke happens and I end up being *really* special in a not so great way, I'm exactly where I need to be.

So on Wednesday we should be coming home with a 'plan' not that babies always follow anybody's plan, Super Doc or not.  We should know when the hatching of this sweet little one will occur too (again see previous statement).  I've kicked the sinus infection and gotten drugs for the ear infection and the world is really looking brighter.

Mama Bear has settled in, Tomas can wait a while longer, and I'm good.

At least until the next curve ball comes flying.

Ok. Fine

--Referral in for new OB.  Likely hospital I deliver at will be 1 hour and 45 minutes away.

--Talk of scheduled induction because of distance from hospital. 

--Talk of scheduled C-section because of extraordinarily small chance of tumor secreting hormones and a hypertensive crisis happening. 


(Neither are options with which I'm particularly thrilled. If this is what is needed to get baby here safely though, we'll go with it. I'm just tired of Tomas getting to call all the shots and change all the game plans. I KNOW that if Mom and baby come through labor and delivery safely that's all that matters. But I'm tired of having my expectations thwarted and my plans tweaked and retweaked and tweaked again because of a thing in my neck that I didn't invite.)

--Not so comforting, "We're expecting everything to be straight-forward with your delivery, but just in case we need you at a hospital equipped with an ICU," discussion.  Ok.  Fine.

--Cold which seems to want to develop into sinus infection or bronchitis, keeps me from sleeping well at night.  Makes me feel like crap during the day too.  At least it's not as bad as it was over the weekend.

--Rough couple of Mommy days with kiddos pushing boundaries and practicing their howling skills (and not the howling skills needed for Halloween).

Ok.  Fine.  None of it is a big deal.  None of it is huge....  But all of it is wearying.

I'm feeling a bit discouraged to tell the truth. 

This too shall pass and I'll put on my big girl panties and deal with all of it.  Because...  well:  what other choice do I have? 

But right now, in the thick of it, I'm tired, and I don't feel well, and the little things of life seem out of control, and the big things of life seem even more out of control.  And I'm just feeling a little discouraged about it all. 

"O God, Thy Sea is so big and my boat is so small," so goes the prayer.

And I'll add what my good friend Piglet says, "It's a little anxious to be a very small animal entirely surrounded by water."

A roller-coastery week and why I KNOW we made the right choice

It's been quite a week.

I have a cold or a virus of some sort for one thing.  I haven't been sleeping well for another.  That makes the head space of Val a difficult thing to navigate.

We had the fantastic news (mentioned below in an earlier post) from NIH this week that encouraged me immensely.  After that I didn't expect to be thrown for any sort of loop at my OB appointment on Wednesday.  After all, I had a game plan and I was on top of everything.

But there was this other bump that I'd been stressing over.  The one on my belly.  I presume it is this bump and it's odd location that makes people exclaim, "Oh My, You're just HUGE!!!!" upon seeing me these days--which believe me is a great ego booster for a girl, especially when those same people try to convince me I'm  having twins or that my due date is off by two months. 

And that bump, as I mentioned yesterday, it turns out is most likely a hernia.  And my doctor thinks that most likely that hernia will need to be dealt with surgically post baby arrival.  And that news...  That news did not please me any.

I looked at Andy after sobbing hysterically in the Goobermobile for a few minutes after the appointment and said, "I can take the news of a Carotid Paraganglioma and go off to work.  Here I am crying over a hernia?" 

But really, first of all, hernias sound like something that only hairy, large men with names like Bif and large biceps should get--at least in my head.  And second of all... 

Um...  Have you been paying attention to what's going on ALREADY after this sweet little girl makes her appearance in our lives?  Things will be quite full enough thank you and I'm not really in the mood to 'squeeze in just one more tiny surgery' no matter how 'routine' it may be.

So there was that.

And then, my doctor mentioned that the anesthesiologist wanted to see me.  I've given birth at this very Naval hospital two other times before this pregnancy and not once has an anesthesiologist wanted to talk to me.  In fact, since my labors happen mainly within the 'it doesn't really count as REAL labor according to the intake nurses' window of being dilated to 2 cms for 6-8 (painful, contraction-filled) hours and then going from hearing 'you're never going to have this baby at this rate, woman, deal with it,' from the nurses to 'Holy cow it's time RIGHT NOW!!!  Somebody put on the Catcher's Gear!" in the course of a few minutes, I've never even had time for an epidural.

But this time an anesthesiologist consult was requested.  So I asked why and I was told that it's because I have a weird thing in my neck and they wanted to talk to me about what that might mean with anesthesia. 

I was shuffled around on this particular consultation two days in a row.  In the meantime I talked to the amazing people on my team at NIH to find out what my anesthesiologists DID need to know.  That boiled down to one thing really:  It is really, really, really, really, really extremely unlikely that this Para (or another one that we don't know about) would secrete hormones and spike my BP especially given my catecholamine/metanepherine levels being normal and my blood pressure being a little on the low side even with all the crazy that's happened lately.  BUT it's not unheard of.  Sometimes the stress of labor triggers an otherwise 'silent' para into action and when that happens a hypertensive crisis could happen.  So...  There was just that one little thing they needed to know, really.

After being led through a maze to find the anesthesiologist's office at the Naval Hospital today (which was...  strangely in the middle of the dental wing???), and after waiting for him for 15 minutes in a hospital that was mostly deserted because of meetings, and after speaking to 3 different people wondering where he was and then waiting on him to come shuffling in, I finally got to sit down and talk to the guy.  He was worried about blood flow and about my airway, which are valid concerns for a gentleman of his profession.  When I used the word 'paraganglioma' he said, "Do you have documentation of this diagnosis?"  And I said, "Um...  Yeah."  He yelled at me for not having a specialist following my case more closely and I told him that no specialist wanted me until after my baby was born.  And then I brought up the issues that my folks at NIH had indicated were most valid to address.  He grilled me on my cat/met levels and noted my low and stable blood pressure so far and made a 'what is with this weirdo patient worrying about things that aren't going to happen?' facial expression that I'm coming to know quite well.  Then he said "If you ended up having a hypertensive crisis we could give you drugs to make you stable and transport you to another hospital more equipped for those things, but I think you'll be ok delivering here."  Translation:  In the (admittedly extremely unlikely, but not unheard of) event that the stuff hit the fan...  I'd be toast.  And this guy didn't really care.

So I came home.  And I cried.  And I sent an email to NIH. 

And NIH called back straight away and said, "You know...  You really need to deliver at another hospital," and I blubbered something about how they probably couldn't refer me out because I haven't been SEEN by someone who would recommend it given my diagnosis...  And the wonderful nurse who has begun calling me 'honey-bunny' from all of the conversations we've had in a way that doesn't even really annoy  me, said, "WHO DO I NEED TO TALK TO?"  And I cried.  And felt better.  Because SOMEONE has my back.

I have really been hating being a rarity lately.  I hate that when I talk to a doctor here in this state--even the super-specialists at places like UW--I am thought to be a hypochondriac zebra-chaser.  I hate that within about ten minutes of talking to some of the doctors I've encountered that I can tell that they are not clear with the terminology.  For instance a "Carotid Body Tumor, (which is actually a misnomer) IS a paraganglioma.  And a Paraganglioma IS very similar to a Pheochromacytoma.  It's the same thing, but located outside of the adrenal gland.  I don't WANT to be the expert.  I know very well that I haven't gone to med school.  But because of that fact most of them blow off any information that I give them because after all 'they're the ones making the big bucks.'  It's enough to make a girl feel completely, and totally alone with a diagnosis that is treatable but serious and has the potential to be very serious not only to me, but possibly to my children also. depending on what we find out about the genetic nature of the disease. 

And that is why I am so INCREDIBLY THANKFUL for NIH and for the communication that they have been so free with and for their answering my questions and NOW being willing to talk to whoever needs to be talked to to make sure that until I come to THEM that I am seen by the best people possible.

So what's that mean on the news front? 

It means that...  Well, I have a hernia too.  It means that there is a good possibility that I will not be delivering at this hospital.  It means that we have about 8 weeks to figure out where I'm going to give birth and it means that I may be saying goodbye to the only doctor in this part of the country who has taken me seriously and advocated for me and not treated me like a zebra chaser:  The Family Practice Doc. who has been following my OB care. 

It means there may be a battle for a referral with TriCare, but I have faith that my person at NIH will get the right information to the right people to get me to the right place

But hopefully, ultimately it means that all will be well for the part of this deal that is supposed to be joyous and that is supposed to be about the arrival of the sweet little person growing and kicking and wriggling within me as we speak.  If that part of the puzzle can be put in and put at rest, we can focus on that for the next few weeks and get into the joy part of it all before heading to NIH and dealing with the tumor part of it all.

I'm still a coldy, tired, and emotionally frazzled girl.  But I AM going to be ok.

Seriously?!

And NOW I have a hernia which will need surgery after baby too. 

I'm naming it Hermione. 

And I'm so totally done with weird lumps and issues--To WHOM IT MIGHT CONCERN.

Swirling Vortex of Chaos Meet Game Plan

So it's not like we have a lot going on right now or anything.

We're just...  Having a baby.

And navigating Carotid Paraganglioma-ville and other 'lumpy issues'...  Which includes surgery on the other side of the country when most of our familial support system (who are being SO awesome and traveling to our side of the country to help us) are located in the middle of the country.

And then, you know...  there's the *little* detail of Andrew's Shore Duty coming to an end and making the decision to stay Navy....  which means that we're preparing for Sea Duty and awayness a lot. 

And well, you know...  Babies don't come with game plans.

And Paragangliomas...  Well their game plans take a while to develop when you are fighting for information and education and the best treatment possible.

And the Navy....  HA.  There's NEVER a game plan with the Navy.  At least not one that gets translated to the service members and families in question in a timely manner.

That's not overwhelming or anything.  Really.  Especially not with crazy pregnancy hormones and the beginning chapters of sleep deprivation (from umpteen trips to the bathroom, and heartburn at 2 am, and the mental dedication it takes just to turn over at night, you understand).

Ok, I've been freaking out just a little bit. 

Today NIH called and I again had a really encouraging and empowering conversation. 

And I got a glimpse of the game plan with some fantastic news:  It's not going to be TWO trips to NIH.  It will only be one.  Scans the first week, surgery the second (maybe a little later, but still pretty quickly), and then we come home until follow-up time. 

That sounds so much easier than two trips and coordinating two times away from my sweet big girls.  That makes things feel like they're falling into place.  And like this game plan might just be workable. 

Tomas--get ready, your eviction notice is likely coming in January.  We'll celebrate the beginning of my 3rd decade by getting rid of you and finding out if we need to be on the lookout for any of your relatives down the line. 

A girl with a plan can look at the swirling vortex of chaos that has been frustrating me as of late with more confidence.  Heck.  I think I'll even level it with the famous Val stare-down.  Not even Tomas is immune to that.