Wednesday, September 24, 2014

Week 18: Level-II Ultrasound

With most pregnancies, moms-to-be go in for an ultrasound only a couple of times in their 40 weeks of gestation.  If I remember correctly, we only saw GW four or five times in total and that was excessive because of the circumstances (realized we were pregnant after we were already 12 weeks along).  With baby bump #3, today marks sonogram number six in only 18 weeks and I know for darn sure that we have many, many more to come. 

We went into the perinatal office today for our level II ultrasound to check on baby's physical development.  As I talked about with the previous pregnancy, the risk with elevated alpha fetoprotein levels is that either there is a malformation with the baby or there is a maternal issue impacting the reading.  While the second isn't necessarily a walk in the park, the first is obviously the more scary of the possibilities and this in depth analysis of baby's body helps rule out conditions like spina bifida and abdominal wall malformations. 

GV in tow, the sonographer gels-up my belly and projects the images of our little one on the screen inciting excited squeals and flailing toddler enthusiasm at the sight of  "BABY!!"  Starting with the spine, the image gradually works down the vertebrate one by one until the sonographer reports that all looks good there before moving on.  Skipping the heart because I'll require a fetal echo in a week or two anyway, she examines all the internal organs, the baby's growth in girth and length and, again, pronounces all's well.

Lapsing into momentary euphoria, all I can think is "THANK GOODNESS!!"  I can't even begin to tell you how relieved I am to once again have a healthy baby despite my abnormal readings.  Granted I know this means there is something up with either my diabetes impacting the pregnancy (typical) or that there may be issues with the placenta (likely), but as we went through these hoops last time I know that I'm in good hands and that my MFMs wont let anything get out of hand.  If it is, in fact, an old placenta as it was with GV, I can only pray that we don't repeat the abruption of all things.  High AFP, okay.  Placental concerns, gotcha.  Abruption - heck no!

Bringing me back to reality, the sonographer then asks the one question every second trimester mom is tempted by: "are you finding out the gender?"

Answering yes, but no - we're doing a fun gender reveal this go around because, why the heck not?! - she tells HB and me to look away from the screen while she pokes and prods the little guy/gal into a conclusive position. Taking a folded card from the cabinet she then announces "I'll be right back, I don't want you guessing from my scratching!" and exits the room.   Upon returning, she hands me the thoroughly stapled shut card and says "CONGRATULATIONS!"

As tempting as it is to open this card now and know what we're having, we found out the quick way the past two pregnancies and knowing now or this weekend doesn't impact what we'll have the rest of our lives.  Either, this card says it's another little girl (what I want) or it says it's another little boy (what I think it is) - but either which way, I'm putting that card in my purse, handing it straight off to the best mommy-buddy a girl could ask for (yeah, you, SP) and thanking God that baby is healthy and doing exactly what he or she is supposed to be doing: growing!    

Next appointments:  week 20 fetal echo and week 21 MFM check up.  But first: gender reveal! 

What do you think baby will be?  :)

Friday, September 12, 2014

Broken CGM. DANG IT!

I don't know what my problem is. I seem to have this amazing knack of breaking equipment that I've become thoroughly reliant upon.  At just over three and a half years into my life as a type 1 diabetic, I'm not only on insulin pump number three, but I'm now on continuous glucose monitor number two. 

Last night, our local RWB community hosted a September 11th memorial event supporting both Team RWB and another veteran service organization, Operation Enduring Warrior.   Intent on participating in this moving tribute, I anticipated run-walking between three and six miles of this "11 on 11" relay, but my blood sugar had other plans.  Waddling almost the full length of one whole block (see how I made that sound like a loooooong way?), I reluctantly had to turn around when my CGM announced my impending hypoglycemic doom.  As I didn't have sugar on me or on the stroller (bad habit to get out of, eh?), I shuffled my way back to our start/finish line to avoid catastrophe and wait for the triumphant return of our patriotic crew. 

HB leading the event invocation (check out that growing belly! Oh my!) 

Upon flopping down on top of the large green cooler RWB provided for the runners, I set my glucose monitor, keys and cell phone on the ground beside me as there was plenty of time (11 miles, even for the fastest will take a while) before needing to pack up for the evening.  I then spent the next couple hours cheering for our athletes as they completed their laps and knocked out their memorial miles, I conducted a quick interview with a local online newspaper and I chatted with both new and familiar faces about this, that and the other thing -- none of which did I conduct near my piled electronics. 

Finally, the event completed, we packed up our belongings and made the collective family decision to scrap the idea of going out to dinner as it was approaching 10:00 PM and,  therefore, well past the hour of human/toddler decency.  Having tucked the kids into their respective beds, I came downstairs to check my BG and grab a quick piece of toast or whatever else to eat before crash landing on my own pillow… little did I know, my night was just beginning. 

Upon reaching the kitchen, I pressed the main button on my CGM and promptly covered my ears as the receiver made the loudest BEEEEEEEEEEEEEEEEEEEEP I'd ever heard.  Reading the never-seen before message on the screen saying "HWFR CALL TECHNICAL SUPPORT," I attempted to compose my angry, confused and concerned mind into a calm and collected voice-mail to the Dexcom support team.  Unsure of what happened or how to fix it, I waited next to my phone for a return call until I'd fallen asleep.  Much to my annoyance, it was only when I called them back again this morning that I began to get even the slightest hint of what might have happened and what we could do to correct the problem.

Supposing that the receiver was stepped on, dropped in the ice water or some sort of combination of horrible fates one doesn't wish for one's electronics, the Dexcom representative attempted to walk me through the "simple" process of resetting the receiver before we determined that, nope, there was absolutely no shot at saving my barely six month old CGM from warranty replacement.  

So here I sit today, up a creek without my monitor and I'm feeling absolutely lost in the world.  A year ago, I was doing exactly what I am doing right now - occasionally pricking my fingers to test my glucose levels - and it wasn't at all a problem, but now that I've become so conditioned to having CONSTANT access to my trending information I feel uncomfortably naked and horribly ignorant of my own body.  It's like part of me has been amputated and my phantom parts are just too much for me to wrap my head around…  I keep reaching for my CGM and groping the bottom of my purse in hopes that the last 24 hours didn't actually send me back to the stone age only to remember that, yep, I was in fact stupid to be so careless. 

Fortunately, since my system is so young and still under warranty, Dexcom is overnighting me a replacement receiver and I should be back up and bionic tomorrow.  However, even with this quick solution turn around,  I can't help but kick myself for the irresponsibility, the unappreciation, the negligent behavior I exhibited yesterday that cost me, yet again, a piece of technology I am thoroughly reliant upon.  In a lot of ways I find my angst today incredibly ironic given how hard I fought against this system in the first place, but it just goes to show that the mind and the body can adapt to anything and I guess I'm finally okay being part plastic and batteries.  Maybe one day scientists will make a pump and CGM that will actually be able to withstand the trials and tribulations of an active life like mine, but for the time being, let's just hope I've learned my lesson and my new electronics are blessed with a much longer life than their predecessors.  

Thursday, September 11, 2014

Week 15: Abnormal AFP Results

And so it starts.  

Had to provide my doctors with the oh-so-charming 24 hour urine test this past Monday along with several many blood samples to get the ball rolling on our alpha fetoprotein testing.  Somewhat anticipating abnormal ranges given the high numbers we found with my second pregnancy, I've spent the last several days stressing and nights tossing and turning.  And, for better or worse, my concerns came to a head today. 

Had my 15 week appointment with the newest partner at the Perinatal Associates practice, Dr. Obi (ironic name if you ask me), and I could tell just by the way she walked into the room that my AFP numbers were high.  Not having experience with our case history or our family's generally stoic response to medical complications, I expect that she anticipated a full on melt-down from HB and me to her news that my levels were 2.2 multiples of the median (MoM).  In the non-diabetic world, this number is perfectly fine given that "normal" ranges from 2.0 to 2.5 MoM, but given the higher risk for complications for both me and the baby due to my diabetes "normal" in my case is nothing higher than 1.8 MoM.   

Responding to her with a disappointed, but accepting "we kind of figured as much" she wasn't entirely sure how to respond.  Explaining that we'd been through this rodeo before, Dr. Obi obliged me by avoiding the implication-explanation and the if-this, then-that details and jumped straight to the next course of action.  

"It's standard to run the test again to double check the results and we can do that today.  If the results are high as this first test would indicate, we'll need to do a level-II ultrasound in about three weeks and get you scheduled for a fetal echo."

Having familiarity with both of these exams, we nodded and left with at least the conciliation that we'd have full answers in a few short weeks (not to mention that we'd likely know the gender of baby two weeks earlier than otherwise). 

That said, I'm still waiting to hear back on the results of the second AFP screening but I'm not expecting the results to be different from the last.   We go in for the level-II ultrasound on Sept 24 so, until then, fingers crossed! 

Friday, September 5, 2014

Freaky Friday, Medical Style

For the past three and a half years I've become accustomed to being "the sick one" in the family.  Hospital visits seem to be typical, a variety of specialists are on speed dial and I can't help but feel that one medical complication usually leads to another.  Throughout this roller coaster of diabetes induced boohockey, the rest of my family has been at my side and, GW in particular, has been my little trooper.  There to snuggle me through my hospital stays, to entertain us through longer than normal waits at doctors offices and to tell all nurses to "be very careful" when drawing blood because he doesn't want me to have another ouch, you could easily say that he's acclimatized to the world of medical issues. 

Left: diagnosis hospitalization at Georgetown University Hospital, January 2011.
Center:  partial-abruption hospitalization, September 2012.   Right:  week 36 ultrasound, November 2012.

Well, yesterday, GW and I swapped places and I have to say, it has me respecting him in a whole new light.  At the beginning of August, GW started speech therapy to help correct his articulation (for example, he often says the "f" sound in place of "th") and his therapist made the suggestion we have his tongue evaluated because of it's heart shape.  Indicating that this shape is caused by an overly tight frenulum (the flap of skin that connects the tongue to the bottom of the mouth), she said it may likely play a contributing factor in his difficulty pronouncing certain sounds.   

Thinking this made sense, I called our pediatrician to get her take on it and she recommended that we take GW directly to see a pediatric ENT by the name of Dr Robert Bahadori in Chantilly, VA who would be able to evaluate the situation much more accurately without being overly quick to surgery as a solution.  Stating that she'd take her children to him specifically if she were in our position, I thanked the pediatrician and promptly called to get GW an appointment with Dr Bahadori no matter how long the wait.  Having several years of experience with specialists as the "new patient" with minimal necessity requiring prompt scheduling, I anticipated it'd be several months before we could get an appointment with this particular doctor or that we'd be given the "our junior practitioner has availability" option, but much to my surprise GW was promptly scheduled for the following week for a frenulum evaluation. 

So back-roading it around the early morning commuting horror that is I-95 North, we arrived at the doctors office (which has an amazing children't play room by the way) where we were promptly seen by a nurse and then Dr Bahadori.  Walking in just as you'd expect a pediatric ENT to - aka Patch Adams style in a yellow shirt and polka-dotted bow tie - he casually asks GW to play with him by sticking out his tongue.  Looking at me for approval before doing something that would under other circumstances get him in trouble, GW darts his tongue out as far as he can (barely to the edge of his bottom lip). 

"Yep, tongue tied," says Dr. Bahadori. 

After a few more playful checks, the doctor looks at me and informs me that there are two points at which he typically sees frenulum issues.  The first is in the first four weeks of life when infants struggle with their tongue movement enough that it negatively impacts their ability to eat and inhibits growth; and the second is roughly in the three to six age range when speech issues begin to appear, as is the case with GW.  Recommending that we do a frenulectomy, Dr Bahadori explained that for those children under four months old, the procedure is a quick in office snip that can be taken care of at any time, but as GW is almost 5 years old it would require that he go to a surgical center and have full anesthesia to make the cut.  

Taking a moment to think about what's best for GW, all of these thoughts about the issues he's had flash through my head:  he can't push food into his cheeks when he takes too big of a bite, he always spits it back out… he uses his finger to swipe away the food that collects between his teeth and his cheeks… he can't whistle and substitutes a "hoot" he learned from Dinosaur Train as his version of whistling… the way he says "teef" instead of "teeth" and "birfday" instead of "birthday"…  the way he's commented that so-in-so is able to stick out his tongue (both because, well, his mom let's him and because he physically can).   Feeling like his little 4 years old life played out in seconds of random memories and snapshot images, I decided it made more sense to go ahead and enable him to use his tongue for the rest of his years by doing the clipping than it did to protect him from the terrifying idea of a scalpel anywhere near his beautiful little body. 

Estimating it'd take less than five minutes to do the procedure and roughly 1 to 2 days for recovery, Dr Bahadori helped me to schedule the procedure for two weeks later and, for better or worse, that came and went yesterday.    While I waited in a consultation room, HB escorted our popsicle-motivated little toughie into the operating room where he helped GW get into place on the table and helped to calm him as the "super-hero" anesthetic mask was placed over his nose and mouth.  While acknowledging that he was glad GW wanted his Dada to accompany him into the OR, HB reported that there was nothing quite so scary as leaving our little man lying unconscious on the table surrounded by scrub-clad strangers… 

HB and GW happily playing in the children's waiting room.

Having been "the sick one" for so long, this reversal of roles introduced a new level of helplessness into my hospital-based repertoire that I must admit I never want to feel again.  Knowing that my own cooperation with doctors orders, control of glucose levels and attempted maintenance of personal health is entirely irrelevant to the ultimate outcome what's happening with my loved ones made the experience far more terrifying than any of the other times I've been lying in any ER waiting for results on this, that or the other thing. 

Fortunately, my patience vs. parent-concern ratio wasn't tried as it otherwise could have been as it was literally two minutes after HB joined me in the consultation room that Dr Bahadori appeared.  Reporting that everything went smoothly, he cleared GW for regular activity within 24 hours and asked for us to call if there were any concerns that arose after discharge.  Impatient to get to the recovery area and see our little guy, we thanked the Doctor and eagerly walked to where GW was curled up under a blanket and eagerly awaiting not us, but the popsicle the nurses had promised to him.  Forty-five minutes, one popsicle and two boxes of apple juice later, he was discharged.  He had a rough afternoon and evening coming off the anesthesia, but in looking at him this morning he is keeping food down and appears to be happy about his new found ability to wiggle his ever-so-slightly medicated and considerably longer tongue.  

Left: Frenulum before procedure.  Right: Frenulum after clipping.

Out of all the procedures he could have had this one was particularly minor (knock on wood), but this reversal of roles provided me a considerable dose of my-own medicine and it definitely was lacking in Mary Poppins' sugar...  I've come to accept my own medical issues as typical and I'm no longer shaken when something new pops up with my body that requires additional attention, but I'd never really stopped to think about how my being sick makes my family feel.  They don't have the symptoms, they don't have to do the tests or get the injections, but they are just as much smacked in the face with my diabetes as I am and it's just as present in their daily lives because of me.  Seeing GW in his scrubs and having these doctors poke and prod at him was more painful than any of the things I've had done and it's opened my eyes to how high of a pain-tolerance this little guy has for everything he endures to be there for me.  For better or worse, he's grown up quicker because of my pancreas and he knows more about hospitals than any almost 5 year old should (Heaven help those children who know even more...), but Lord love a duck is that kid tough and I cannot say how thankful I am to have him at my side or to have the blessing of being there, as his mom, at his. 

"Can I have another popsicle?" 

Monday, September 1, 2014

Okay, fine. I'll talk.

It's probably about time that I actually start writing again… for a long while I've been buried under a voluntary pile of community service work and my hectic schedule transformed itself into a convenient excuse to avoid writing about what I wasn't ready to share, but now that it's pretty darn obvious I haven't just eaten one or two too many burritos I'm pretty sure the shelf-life of my "busy" excuse is up.  

So… long story short… we're pregnant!  HB and I are excitedly expecting Baby #3 this next February and, as of right now, I'm just about 15 weeks along.  It's been difficult this go around to feel comfortable announcing our news given how rough things were with GV's pregnancy, but, let's face it, not writing about this baby-bump doesn't impact the way things go anyway so I might as well get over it.  

Goodbye running condition!

Things started out a bit on the scary-end of the scale for us as we went in for our 7 week viability appointment only to have the sonographer and perinatologist say the baby was measuring much smaller than it should.  Instead of showing a yolk-sac size appropriate to the estimated date of conception - which is initially based off of the first day of the last menstrual cycle and then confirmed by ultrasound - the yolk-sac size was measuring closer to 5 weeks of gestation.  Asking to repeat the test in one week, we went back in with hopes of getting better numbers… unfortunately still measuring small the doctors prepared us for the higher probability of a miscarriage… something, you can imagine, we were terrified to hear.  Repeating the ultrasound again the following week as requested, the numbers were at least showing consistent growth from one week to the next so the doctors felt at least comfortable enough to grant us a due date two weeks later than initially expected:  February 21.  

Obviously this size-discrepancy left us still very concerned about our small baby, but powerless to do much about it we were sent home to wait for further information.   With five weeks until my next prenatal appointment, i tried to find pro-active ways to help care for baby since all else was out of our control:  I decided to limit my physical activity to the stair stepper as I did with GV to keep my heart rate below 140 beats per minute (going on the previously identified concern that hyperthermia could hurt baby) and we cut my carb intake as much as possible to control my glucose levels.  Unfortunately I found myself regularly chasing lows as a result of morning sickness and this second attempt wasn't terribly successful, but with a bit of hands on help from my endocrinologist we smoothed things out. 

One thing Dr. Rogacz taught me that I didn't realize with the previous pregnancy is that the injection of symlin during pregnancy hasn't been formally FDA approved yet.  So while she prescribed that I use it for the later trimesters of my pregnancy with GV, she was adamantly opposed to the idea of starting symlin during the first trimester with Baby #3.  I found this to be somewhat disconcerting, but GV turned out perfectly fine and those injections helped me to regulate my glucose - and therefore her development - so I anticipate that I'll start them again here in a few weeks or months. 

Anyway, so the next few weeks went by ever so slowly with more weight gain and vomit than ideal, but we finally made it to the week 12 neural translucency test.  Knowing that if all goes well this test would be only the start of the flaming hoops I'd be jumping through in the second trimester, we anxiously awaited the doctors assessment on baby's growth… 


And, thank God, heart rate and size were right where he wanted to see them!!  The weight of the world seemed to lift from my shoulders as we discussed the normal ranges they were discovering across the board… talk about music to my ears!  Granted the doctor warned that we'd need to start alpha fetoprotein testing week 16 - the tests were we started to see abnormal results with the second pregnancy - so the music may be short lived, but hey, where we are right now is a definite step in the right direction! 

I must admit that starting to finally talk about the pregnancy, while nerve wracking and definitely to a certain degree unsettling, is cathartic.  I've been so worried about judgement and commentary from the peanut gallery about this, that and the other thing that all my concerns and angst have been bottled for the past several months to the point of pure exhaustion.  I haven't so much minded the exhaustion up until this point thanks to the support from HB and Grandmama, but getting past this phase of stress and morning sickness, and into the second trimester honeymoon phase that was so unfortunately truncated last time will be a huge relief.  

So with that, you now know, and there's no going back from here.  More soon!