Saturday, November 21, 2015

Medical Roller Coaster 2015

I haven’t written in… months.   I had that hypoglycemia incident in, what? May? And haven’t had the energy, the ambition or the give a dang to write about the h-e-double hockey sticks this summer and fall have been.  But seeing as writing about the here and now would be completely out of context, I guess it’s about time that I sum up the medical turmoil the family has faced since June.  

At the beginning of the summer, I finally got around to identifying a general practitioner that HB and I are comfortable working with and feel we can trust.  Having spent the last four years relying on specialists and the occasional trip to urgent care, we’ve been lacking a general continuity of care for all medical issues non-chronic and/or life threatening.  So finally getting around to scheduling a physical, I squeezed an appointment onto the calendar between the end of GW’s school year and the start of my summer programming  in Vermont for my master’s degree. 

Explaining that I’d experienced an unexplainable (aka not blood sugar related) fall over Memorial Day weekend, the doctor ran several tests to establish a baseline of care, including a MRI to rule out Multiple Sclerosis.  Feeling fairly confident that the MRI would be lesion free, I began to mentally prepare myself to get word that I’ve developed Celiacs Disease or Hashimotos Disease or some other diabetes-knock-on illness that is likely for type ones.  So when the phone eventually rang, I took the news with relative detachment: 

 “Your lab results are all clear and your MRI showed no signs of MS,” he began.  “However, it does show a borderline Chiari type 1 Malformation.” 

“Oh, okay,” I responded.

My MRI image from June 2015: The almost circle
like portion of the cerebellum near the occipital
bone should be above, not below, the skull.
Shocked that I not only knew what Chiari is, but how to pronounce it (kee-AH-ree), he helped me quickly set up follow up testing to learn the extent of my condition.  Now, for those unfamiliar with this, Chiari is a brain malformation that occurs for any number of reasons but essentially boils down a too big brain in a too small of a skull with a portion of the brain known as the cerebellar tonsils being displaced into your spinal canal.  This pressure and crowding of your brain can cause things like neck pain, numbness, dizziness, balance issues and a number of other generic symptoms that are easy to misdiagnose which, in my case, is likely why we never caught it before.  

So following that first brain MRI, we crammed three more MRIs into the next week and scheduled a consultation with a neurosurgeon at the Johns Hopkins Medical Center in Baltimore for immediately after my return from Vermont in August.  Feeling comfortable that my 5 mm profusion hadn’t caused problems in my life thus far, HB and I decided continuing on with life as if it were normal was the only reasonable thing to do - so off the three kids, my Mother and I went for six weeks of study and play in the Green Mountains.  

Well, just days into our time in Vermont, things started to go south.  Electing to take the summer off of school and just enjoy the children and the scenery for the blessings they are, I went up to campus to talk with the program director about withdrawing from my scheduled classes.  And that’s when it started…  I remember walking into the meeting and sitting across from this woman I’m quite comfortable with and floundering with my responses to her reasonably straight forward questions.  I’d think of an answer and by the time my brain told my mouth what to say, it was gone… and then I was gone.  The next four hours are snap shot images of my surroundings but otherwise they aren’t there.  I don’t remember leaving the meeting I know I got into my car to drive home but couldn’t figure out how to buckle my seatbelt or where to put the keys (thank God my Mom was with me) I don’t remember picking the kids up from summer camp I remember GW and GV eating yogurt at the table and wondering whose kids they were I remember my Mom saying “you’re scaring me” when I refused to have anything to do with the baby but none of that flowed in any context… None of it made sense…  It just wasn’t me. 

Toward the end of that time frame, the phone rang and I was vaguely aware of my Mom talking on the phone with someone about going to the hospital.  Moving around me with a sense of purpose, my Mom handed me the phone as she began putting things into bag and shoes onto the kids.  

“How’d your meeting go?” The voice on the phone asked.  It was HB. 

“I don’t know,” I replied.  

“What do you mean ‘you don’t know?’ Did you see the director?”

“I don’t know.” 

“Put your Mom back on the phone,” he instructed. 

Within moments she had hung up and was shooing the four of us kids, grand and otherwise, out into the car.  Slowly gaining awareness of what was happening around me, I sent a friend a few concerned, jumbled text messages as we pulled into the rural hospital’s ER parking lot.  By the time we’d completed registration, triage and I was sitting on a gurney in front of the ER’s trauma doctor I was 100% back in control of my faculties and thoroughly freaked by the situation.  

Being a small, local facility this particular hospital, unfortunately, sees more broken bones from ski accidents than they do complex neurological cases so the doctor was completely baffled as to what he should do.  Calling over to the Dartmouth University Hospital, he was given general instructions to discharge me and send me to see them the following week.  Not comfortable doing absolutely nothing, he ran a head CT to attempt to rule out a stroke, but without concrete evidence he eventually did as the Dartmouth neurologist instructed and we departed.

You can imagine how uncomfortable we all were.  I mean, here I am with a new Chiari diagnosis and I’m coming out of a complete altered personality/blackout phase where I didn’t recognize my own children, the doctors are throwing around words like stroke/seizure/TIA, my husband is several states away, my Mom is caring for multiple scared children and I am just supposed to follow up next week?  I don’t think so.  Within the next two days, HB flew up to Vermont, helped us pack the house and drove us back to Virginia where immediate appointments waited for me at our new GP’s office and with the specialists at Johns Hopkins (yes, they made time for me on short turn around - seriously impressive!).  

So over the course of July and August we ran tests on my nervous system, my cardiovascular system and circulation system to see if we could pin point what exactly happened.  Determining that my Chiari was not responsible for the altered mental state and was not significant enough to worry about let alone warrant surgical treatment, the doctors biopsied four thyroid nodules that we found on the MRI (non-malignant, thank God), they measured the calcification in my carotid artery to see if second hand smoke may be to blame (more than the average person, but within age appropriate limits, so non-applicable), they ran EMGs and EEGs to track my nerve-muscle communication and brain wave function (all normal) and Lord knows how many blood tests.  By late August, I’d begun to feel like a human pincushion.  But, fortunately, I started to get solid answers from one doctor in particular at Hopkins who analyzed my symptoms, my medical history and my frequent headaches and concluded that I am suffering from complex migraines.  

Stating that complex migraines differ from the common understanding of a migraine as a horrifically bad headache, the doctor explained that what I have can cause speech disturbances, motor impairments, significant confusion, visual interruptions, muscular weakness, nausea and any number of additional symptoms that none of us want to endure and I have been struggling with.  Arguing that this condition is more concerning to him than Chiari due to the concomitant accidents complex migraines can cause - again, thank God my Mom was there to drive my car!! - he decided that getting them under control through the prescription medication is a top priority.  So at three months into treatment with venlafaxine, things are looking promising.  I have had “moderate” headaches, but none have been severe enough to warrant intervention or caused significant impairments (knock on wood).  The doctor has high hopes that he’ll be able to further reduce my symptoms with a higher dose of this medication once I stop nursing next year, but that remains to be seen.  

I guess, at this point, I am feeling comfortable and confident enough about the care I am receiving to write about it and face the future with more certainty than I did back in June.  Back then I was terrified about the idea of brain surgery or the effect a serious stroke would have on my ability to take care of my children, or the obligation it’d place on them to take care of me, but way somehow opened and things don’t seem quite as dire as they did.  Obviously I am still nervous about the worst possibilities my body could have in store, but I’m alive and more or less healthy, the kids and HB are alive and more or less healthy so what more can I really ask for?  God delivered and, for that, I am truly grateful. 

I know I’ve missed a lot of details in summing up this medical roller coaster in a singular post and, kids forgive me, I’ve lost so many sweet, blog worthy family moments in the noise of it all, but that’s where we’re at and what we have to cope with.  Starting again is always painful - in writing, in running, in whatever - so the bandaid is off and here we go again.  

See you soon. xx

Thursday, May 21, 2015

Diabetes has a sick sense of humor.

Following my hypoglycemia “incident,” I have been trying to get my medical ducks all lined up for a thorough inspection.  Making doubly sure to scrub behind my ears, floss between my teeth (ironically this broke my permanent retainer requiring an emergency trip to the orthodontist, but hey, it was in the name of hygiene), take my vitamins and do an extra plank or two before bedtime, I went into my May endocrinology appointment with the expectation that I was doing everything that could be done for optimal self-care.  Upon seeing that my HgA1C had dropped from 5.8 to 5.3 over the past three months, however, my doctor concluded that I’m probably doing too much to address my diabetes and that’s likely why I had the “incident” in the first place.

“You’re treating your diabetes like you’re still pregnant,” she says. “Your glucose control is too tight and you need to let your overall numbers rise or you’ll be facing more frequent occurrences of severe hypoglycemia.”

Stressing that my concept of the “ideal glucose range” (70 - 140 mg/dL) is only truly necessary for the conception and gestational development of a healthy fetus, my endocrinologist encouraged me to recalibrate my expectations and sight my blood sugar goals above 100 mg/dL so as to provide a buffer between me and, well, the pavement.  Attempting to introduce the concept of leniency into my daily regimen, she argued that my typically aggressive approach toward glucose management will only create more problems rather than solutions as time goes on.  Explaining that while it would logically follow that I become better at diabetes control the longer that I am a diabetic, she said the opposite is actually true because the disease becomes more erratic and more difficult to pin down the farther you go away from your honeymoon phase (which, if you remember, is the period of time following diagnosis where the dying beta cells in your pancreas still makes a small amount of insulin).

“But, what about the adverse consequences of letting my glucose numbers rise?”  I asked.  “Won’t slacking off on my self-care only result in organ damage down the line?”

Taking a deep breath, she responded with the thoroughly uninspired “maybe.”

Explaining that the technology for HgA1C measurements have only been around a short while and that there hasn’t been long term research done on the correlation of A1C management to complications or the lack there of, she said that doctors don’t really know what glucose range to recommend because there are life threatening consequences if you go too far toward either end of the spectrum.  On one side, tight regulation like I do creates frequent medical emergencies for diabetics due to the severe hypoglycemia it creates; whereas unconstrained hyperglycemia on the other end of the spectrum directly causes organ failure, neuropathy, blindness and a whole host of other issues one would rather avoid.  Thus framing my position (rock-me-hard place) as one requiring a very delicate balance, she indicated that she, at least, would be more comfortable with my HgA1C being between 5.8 and 6.0 by my next appointment in August.

Pulling another rendition of my all too familiar phrase of “yes, but” into the discussion I told her that “the perinatologist said that, were we to get pregnant again I should keep my A1C under 5.2 to prevent the complications we saw with this last pregnancy.”

“Well, that’s ridiculous,” she retorts.  “With an A1C that low, you’re more likely to have a hypo-fall and hurt any future babies than to protect them from macrosomia or polyhydramnios.”

Stating that such “minor” complications were (and likely will be in any future pregnancies) unavoidable due to my lengthening history with the disease, she explained that my “diabetic-age” essentially undermines the effects of tight regulation and probably caused the complications with FG’s pregnancy in spite of my stellar A1C throughout the ten months.  So although my A1C this go around ensured a perfectly formed heart, prevented the development of spina bifida and made all concerns about miscarriage or stillbirth a non-issue, it simply wasn’t enough to safe guard against all of the high-risk nuances of a diabetic pregnancy in the face of my crippled pancreas.  But, in light of the existential dangers more frequent hyperglycemia would cause for a growing baby, I think I can cope with the unpreventable complications of larger babies and excess amniotic fluid so long as my glucose management efforts to avoid the worst continue to pay off.  And, frankly, FG definitely counts as paying off!

So long story short, the rational side of me knows the only action plan from here is to set the longer term question about potential future pregnancies aside in favor of very real, here and now self-care concerns and choices.  The emotional side of me, however, is completely upset and frustrated by the “a’int nothin’ you can do about it” attitude I feel like my pancreas is giving me and no matter how I fight its sass-mouth, it still seems to find a way to breach my defenses and leave me vulnerable to its whim.   It’s completely unfair that my growing knowledge of and comfort with my body on artificial insulin doesn’t easily equate to a well balanced, healthy lifestyle.  In some sense, I am envious of those people who have Type 2 Diabetes as their positive effort to address their condition through diet and exercise directly impacts their overall outcome for the better… whereas I can go run a marathon, cut whole food groups to nurse, monitor my glucose numbers, drink water by the gallon and it won’t matter.  No matter what I do, I’ll still be a diabetic and no matter how much “expertise” this brings, I’ll perpetually be relegated to rookie status thanks to the sick humor of chronic illness. 

Wednesday, April 29, 2015

Hypoglycemia 202: the hard way.

I’ve been procrastinating this post for a while now.  I’ve had a couple opportunities to sit down and write it, but I’ve been practicing my avoidance.  I’ve started to draft it once or twice, but found the delete button highly effective.  I’ve even had a couple “just do it” moments that instigated nothing short of the my slamming the computer closed out of complete frustration.  It’s not that I can’t find the words to write about the walk I took last week, it’s just that I don’t want to write about the walk I took last week.  You see, if I write about it, then I have to think about it.  If I think about it, I have to address how I feel about it.  And if I have to address how I feel about it, well, the can of worms just opens and makes for one heck of a mess that I frankly don’t have the time, patience or emotional fuse to clean up. However, if I never get around to writing this post I'll never actually move on from it, so I might as well get it over with.

So, I went for a walk last week.  Not a particularly noteworthy thing to do as it was scheduled at a somewhat predictable time, in a fairly typical place and it was with a girlfriend I see more often than anyone else in town that I’m not directly related to.  It started out just as normally as our previous walks had with swapped inquiries and empathetic anecdotes, but instead of being a refreshing jaunt and enjoyable time it turned into an uncontrollable tailspin as my glucose brought me crashing to the ground.  Literally.   

But to explain the situation fully, I have to go back a few weeks to frame the disaster: 

Since the baby was born I have been struggling with my diabetes.  I don't know if it is because of the baby weight that I am just. not. loosing. (uggggg!!), the stress that we’ve been under, the restricted diet I’m following or what, but my blood sugars are all over the map.  Shooting high when I expect to have them in control and conversely bottoming out when I’m fully prepared to fight them down from the rafters, I feel like glucose predictability and regularity are two key factors that are currently missing from my diabetic self-care wheelhouse.  Finding that I can sit down to eat the exact same meal with the exact same insulin dose from one day to the next and have my resulting postprandial be anywhere from the mid 50’s to over 350 mg/dL with zero rhyme or reason, I've somewhat resigned myself to a terrible HgA1C at my next endocrinology appointment since my blood sugar just doesn't want to play nice and I simply don't have the wherewithal to fight it.   

Unfortunately, no matter how emotionally satisfying this apathy and slack may be, this unpredictability is complicating my life because I am experiencing new symptoms that may or may not be diabetes related and with my blood sugar so out of whack I cannot confidently rule it out as the source of these new problems.  Knowing full well that hypoglycemia can cause the loss of sensation in extremities - something I am quite familiar with in my hands and, oddly enough, my mouth - the worst sensation I’ve recently started to experience is wide spread tingling and numbness in my legs that I’ve never before felt.  And while it’s entirely possible that this could simply be a new expression of my maturing diabetes (just kidding, it’ll always be juvenile), the occurrences of this numb sensation do not necessarily correspond with the low readings on my continuous glucose monitor and make me think they could be something entirely else.  Maybe a result of my muscle atrophy from all those pregnant months of non-exercise? Who knows. But, not feeling a dire need to know what's up immediately and finding comfort with the knowledge that my doctor's undivided attention is just around the corner, I've conscientiously pushed my concern for the hot mess that is my diabetes down the list of daily priorities. 

So, bringing this all back to the infamous walk, I double checked my glucose before we left the parking lot and found my numbers to be at a safe walking-pace of 130 mg/dL (which I'd like to point out is notably and randomly less than the previous day's 320 mg/dL for the same breakfast scenario) so I suspended my pump's insulin delivery to be on the safe side.  But, about a mile into the three mile loop, I started to feel the initial inklings in my quads that my legs were loosing sensation and my friend noticed that my stride began to be audibly sloppy.  Unsure if this was because of my diabetes we took a break to look at my glucose monitor.  Finding that my sugars had dropped down to 65 mg/dL, a minor low and a number I've always been able to power through, I reassured my friend that I felt capable to finish the remaining mile and a half back to our cars. Not feeling any other familiar symptoms of a low, we passively discussed that there was food back at the car to correct my glucose and set out down the path at a slower, less coordinated pace.

Found this, and a few others like it,
on my phone two weeks after the
 incident happened. I don't
remember taking pictures and had
 no clue these were there. 
With every quarter mile we knocked out, I felt like my body became more alien.   Conscientious that this low might be getting more serious, I felt trapped within my own head as the unfamiliar symptoms overwhelmed my faculties and I sank into the confines of hypoglycemia:  my arms weren't my own and pushed the stroller too fast or in the wrong direction... my feet were independent from my body and, in both pace and basic function, impossible to coordinate… my fully formed, yet simple thoughts were too complicated to translate into articulate sentences… my cheeks were tingling and prevented my lips from forming intelligible words... 

Ultimately, the carbs in my car were too many blocks away to aid the rapidly deteriorating situation my friend found on her hands.  Already pushing a single stroller of her own, she took over pushing GV in my stroller as well with three quarters of a mile to go... with a half mile to go she helped me remove FG from my Ergobaby carrier and strapped him to her own torso... with the second to last road crossing in view, she asked me if she ought to call HB for help, to which I think I said "no" since, logically thinking, he was farther away from the situation than we were from the car.

What happened next is fuzzy.  All I can confidently recall are snapshot like memories: a happy looking man sitting alone at a picnic table; my hand touching a black metal fence railing; my friend's voice above me; the distant sound of sirens echoing through the seemingly empty halls of my head.  I remember sitting on the side of the path and mutely trying to figure out which of the three electronic gadgets in my lap was my glucose monitor (doesn't help that my pump, my glucose monitor and my cell phone are all the same shade of blue). I knew I needed to figure out what my blood sugar reading was and that insulin delivery had to be stopped (I'd forgotten by that point that I had placed my pump on suspend at the beginning of our walk), but how to go about doing those tasks was completely beyond me despite my efforts to the contrary. 

More snap shot memories followed:  a woman and a man, both dressed in blue, asking me and then my friend questions when silence was my only response; someone holding my palm out to test my blood sugar;  the number 33 mg/dL being said over a radio; a male voice saying something about rapid glucose as my mouth filled with a sweet tasting gel; my friend mentioning something about shade and walking away with my baby and little girl; a random woman using the phrase "poor dear" in passing... 

And just as if flipping on a light switch, the world became clear again. I knew where I was.  I knew what'd happened.  I recognized the blue-clad individuals to be paramedics.  I registered the oversized bandaid on my finger tip from where it'd been punctured.  I easily picked up my glucose monitor and read that my sugar was up to 55 mg/dL.   

"How you doing?" the male paramedic asked.  "Want to take a trip over to the hospital?" 

"Much better," I responded.  "I'll be fine now that I've had sugar." 

"Let's at least get you back to your car before making that call," the female paramedic said. 

Insisting on walking the remaining block to the car rather than receiving yet another ambulance ride (the two I have already done are enough, thank you very much), I let the paramedic escorting me ramble about the heat and her job and Lord knows what else as I silently focused on getting to the kids.  Don't get me wrong, I knew they were in good hands and that I was the one in danger rather than the other way around, but with my world so severely rocked by this hypoglycemic episode I needed them - at the very least - to be back within my comfort zone.  Upon getting back to the car and signing the paramedic's waiver that I was stable and had declined further medical intervention, my friend informed me that she'd called HB and that he'd given her strict instructions to not let me leave until he arrived at the park in about 15 minutes.  Insisting that he work from the house for the remainder of the afternoon, HB took us home and let me collapse from the exhaustion that thoroughly consumed my body.  

Having never suffered the consequences of a low this severe before, I am still reeling from the enormity of this experience.  Physically speaking, my head has felt foggy and my thoughts slow in the waking periods between the hours I've needed to sleep the shock away.  My legs were weary and fatigued for several days to follow, difficult to lift and tiring to move.  The cuts on my knees from where I must have fallen - something I have no memory whatsoever of - are still red, but the scabs have long since closed the open wounds.  

And while I expect these bodily symptoms to fully pass with time and rest, I am fearful that the emotional ramifications of this walk are lingering in a way that may prove to be permanent.  Bruising my pride and mettle, the fact that I have never before fallen out from under my own vigilance and become prey to a low has me unsure of my own abilities -- the symptoms were there, but they weren't what I'm used to and they progressed faster than I ever had hope to catch.  Unconfident in my hypoglycemic awareness and insecure in my capability to execute independent action, I feel like my lifetime's accomplishment of adult autonomy collapsed along side my body on that path and both shattered into an all too scary reality of helplessness.  I was fortunate this go around to be with a friend who is capable of action in the face of crisis, but the reality is that I am at the mercy of my blood sugar and, in the bleakest of moments, all I can do is pray that the circumstances I find myself - and potentially my children - in isn't life threatening and that someone capable of help is at hand.   

But where does that leave me?  Should I risk a solo-training run or wait for a pair of babysitters - one for the kids and one for myself?  Is another solo half marathon even remotely responsible?  Does that first alarm on my glucose monitor mean the heads-up it has historically or should the cavalry be called in to  forcefully drive my sugars back up from whence they'd come?  Must I broadcast my disease as my summary introduction or does my name still suffice?  Should I resign my aggressive glucose control for my nursing or potential future pregnancies and accept a higher HgA1c for the "safety" buffer it places between me and hypoglycemic oblivion?  What of the organ damage such a compromise would present -- do I risk dialysis, neuropathy and blindness to guard against seizure and unconsciousness? 

Half of me feels the answers to these questions are crystal clear and the other half is no longer sure.  I've worked so damn hard these past four years to have my sugars under tight control that the corresponding risk of increased hypoglycemia is logically increased, but at what point does one's good intentions cause right to become wrong?  I thought I knew, but now... I don't know. 



Do you know how to help someone suffering from hypoglycemia? 
Check out my post Hypoglycemia 101 for more information

Monday, April 13, 2015

Well Baby and Follow-up Appointments

Today was a big mile stone for little FG as he had back-to-back appointments with the pediatrician and the pulmonologist this morning.  Beginning with his routine two month well baby appointment, we found out that despite the struggles we've been having with his reflux and sensitive tummy, FG is growing exceptionally well.  He has put on several pounds and a few inches to become a 25 inch, 16 lb 8 oz eight week old baby -- which, yes, is off the growth charts!  I have been warning GW and GV to eat their  dinners and not fight about the brussels sprouts for fear that they'll be out paced in growth by their baby brother, but until today, I'd somewhat considered that to be an empty threat.  Suggesting that we revisit the reflux topic again at his four month well baby appointment, we're under orders to merely stay the course as, thank God, it appears to be working. 

The appointment with the pulmonologist was a one-month post discharge follow up - which, I find hard to believe was already 30 days ago.  Fortunately, the appointment was predominantly positive as the doctor was able to reassure us that the lingering post-bronchiolitis symptoms we're seeing are entirely normal for his current place in the recuperation process and that the additional vibrations and grumbling that we've been fighting are likely caused by his reflux and not originating as a new lung infection.  Giving us an infant respirator as well as a large prescription for albuterol, he expressed comfort with the current PT routine and any as-necessary use of the albuterol between now and the end of the summer.  Asking us to make a follow-up appointment for just before the school year, he stressed the importance that we make a game plan before the onset of the next RSV season to ensure that if - or more likely when - FG gets RSV again that it doesn't become another hospital-worthy case.  Appreciating his candor, we're on the books for a late August appointment and hoping that there is nothing worthy of note that occurs between appointments.  

Happily cooing and going while watching me type this, I am feeling pretty good about the trajectory of FG's current status and I pray that things continue on the up and up.  He's such an easy going, content little guy who likes nothing better than eye contact and snuggles so I'm feeling pretty blessed.  Seems like the worst (knock on wood) is behind us.


Sunday, April 5, 2015

Lingering Symptoms... Lasting Fear.

It has been a long, long night.  I know that FG will continue to demonstrate symptoms of RSV and bronchiolitis as his lungs recuperate from the infection that had him hospitalized, but around seven o'clock last night his symptoms changed and scared me half to death. 

While standing in the kitchen holding a sleeping FG to my chest while chit-chatting with HB and Grandmama, I noticed his breathing become much more audible than it has been previously.  Going from the occasional wheeze and sputter to a constant deep grumbling, I placed my hand on his back to better see his face and alter his neck angle in case his position was causing the change or inhibiting his "normal" rate of breathing.  But as my hand came to rest upon his back, I felt it: vibration in his chest that corresponded with the rhythm of his inhale and exhale.  

Calling the pediatrician immediately, the on-call nurse's line promptly said "given his history and the severity of his symptoms, I need to contact the on-call physician to assess the situation."  Within a matter of minutes (rather than the typical 45 to 60 minute lag time I am used to), the doctor was on the phone instructing me to get him into the bathroom with the hot water running and to count his respiratory rate.  Knowing full well that anything over 60 breaths a minute is considered "rapid" and therefore dangerous in these little guys, I wasn't necessarily comforted that his rate of breathing was 54 breaths a minute.   Concerned by this but not "get to the ER right now" kind of worried, the doctor talked me through the process of giving FG respiratory physical therapy by banging on his back - harder than typical of a burping motion - to move whatever mucus was causing the obstruction and, therefore, his new symptoms.  

So sitting on the bathroom floor with my back to the bathtub and the scalding hot water rising into steam behind me, I pulled FG upright on my chest and began to pound on his back.  Within a few minutes, his vibrations and grumbling stopped.  Expecting this to be a temporary solution, the doctor then instructed me to continue this PT process as long as it continues to resolve the symptoms as they reoccur.  "BUT," she says, "if these symptoms return and the PT does not change them, you need to bring him to the ER immediately for evaluation." 

Thanking her and hanging up the phone, I glanced at the clock which now read 8:30 PM and knew it was going to be a long night.  Agreeing with HB that we should pull shifts to watch over him throughout the evening, we set up several humidifiers in the nursery and I settled into my Grandmother's old blue chair for the first shift.   With FG propped upright against my chest, I had to place my book down every few pages to administer another PT session but, thank the Lord, they continued to work.  But four o'clock this morning I couldn't maintain my vigil with confidence in my care so I woke HB who brewed a few cups of coffee, grabbed his work bag and relieved me to sleep until the family went to Mass in a handful of hours (which, admittedly, I have missed since going to the hospital for fear of the crowds).  

So far today, FG appears to be in good spirits and is continuing to respond well to this new routine of respiratory physical therapy.  In talking briefly with the doctor again this afternoon, she indicated that as long as we can keep the mucus moving and prevent the onset of additional lung infections brought about by mucus build-up, he should be fine and shouldn't need to be seen between now and his one month post-RSV follow-up appointments next Monday.  I'll obviously keep them on speed dial just in case, but I feel reassured (albeit thoroughly exhausted and still quite a bit terrified) by the fact that there is something we can actually do to help keep FG safe at this point.  He doesn't seem to mind all the adamant back-patting he's been getting, so from a comfort stand point he seems to be doing alright.  

I truly wish that this waking nightmare of infant respiratory issues would end and we could go back to a normal state of parenting.  I feel like we must be the only third-time parents out there who are treating their third born as if he were the first -- "Don't use that blanket, it touched the floor!" "Wash your hands before saying hello to the baby!" "No, I'm sorry, you may not meet the baby. Maybe by the time he is four." "You want me to take him where? The grocery store? Sorry, I'd rather starve." -- but after the scare we've had I can't begin to justify the risks of laxity and complaisance with any of these children, regardless of their ages.  Obviously I cannot hold GW out of school for fear of germs and GV is at that thoroughly difficult fingers-to-mouth phase, but I unapologetically feel that any unnecessary exposure that we can proactively guard against isn't worth the cost of ER admission.  I am grateful that FG "only" needs constant PT at this point, but I pray to never, ever again be in this same position. 

Tuesday, March 17, 2015

Food restrictions

So just when I thought life was getting a little bit easier and my pregnancy diet of eggs, eggs and more eggs was beginning to fade from memory, the follow-up appointments we've had for FG at the pediatricians have constricted my reality to a new level.   While things post-RSV wise are going well for our little angel boy, the antibiotics that he was given at the ER and over the first several days of his stay in the PICU have proven to be so strong as to thoroughly kill off the good gut-bacteria along with whatever other bad bugs may have been lingering. And although this is a minor complaint compared to the risk of facing bacterial meningitis (and therefore a call I would gladly make again), the knock on effects of this complete zeroing of the "pro" biotic scale is enough to both pity his sensitive little tummy and to rant at my rotten luck. 

Causing him to suffer from a constant case of reflux and a smattering of rashes and diarrhea, the doctors have recommended that I assist his recovery from the antibiotics by beginning a series of food restrictions to help his little stomach get back to normal.  As my diet directly impacts the nourishment he gets through breast milk, I am placed in the position of doing what he needs at the expense of my palate or forfeiting the opportunity to breast feed -- which I can flat out tell you is not going to happen.   So, starting the restrictions with all things containing dairy at last week's  appointment, the pediatrician handed me a sheet of paper with all the dietary vocabulary that, until further notice, I need to be leery of: 










Unfortunately, at the follow-up appointment we had yesterday, the pediatrician agreed with me that his symptoms of rash and copious spitting up warrant the escalation of my dietary restrictions to include soy and nuts as well.   Hoping that the combination of these three usual suspects enables his skin to clear up, his spitting up to diminish and his diapers to be more predictable, I have my fingers crossed that some combination of the three will be the key to making tummy wobbles disappear for our quickly growing little one.  

The thing that is surprising me, however, is that as straight forward as it seems like it should be to avoid all things with dairy, soy and nuts, it's a lot harder to find ready made food or ingredients that don't include these in some form or another.  Who knew that soy is in canned tuna, most breads, mayonnaise and cereals?  What's a diabetic to exercise if my go-to quick carbs of chocolate, yogurt and milk are all off limits? How the heck is a girl supposed to attack the world in the morning without a cup of coffee (the "proper" way to make a cuppa in my opinion: two scoops sugar, one part coffee, three parts milk)?  I am sure that I'll figure this out the further we get into this, but daggnabbit! 

I guess on the up side, all the proteins, vegetables, fruits and grains I can eat should be able to help me shed the rest of my baby weight, but with GW and GV sitting here next to me eating pb&j on store bought bread it's hard to see any of my own benefit from this scenario.  For the little man, of course, it makes total sense and I'm not about to cheat, but were this just for me, I'd be off the bandwagon before hitting the doctor's office parking lot! 

FG, may you never doubt how much I love you... 

Friday, March 13, 2015

Discharged home!

HB loading FG into his
carseat for the drive home. 
At just over a week on the regular pediatric unit and two weeks for this hospital stay in total, FG is finally being discharged home!  Having worked with the Pediatric Pulmonologist closely over the past few days, FG has successfully been taken off of his oxygen cannula and we know with confidence that he is now officially in what is being described as the "post-bronchiolitic" phase of this illness.  Essentially meaning that he's no longer actively fighting off infection despite the continuation of persistent visible symptoms, we are leaving the hospital feeling confident that this bout with RSV is behind us and that we know what to expect of the new normal.  He'll likely go on bobbing his head, wheezing and occasionally retracting, but unless things dramatically worsen, this is - for better and for worse - how it's going to be for the foreseeable future.  Warranting a few follow-up appointments, a serious amount of hand sanitizer to be stationed around the house and a complete bar on all visitors, we're heading home with our precious baby boy. 

Despite our homeward bound jubilation, I think HB and I are finding this experience to be a lot more sobering upon reflection than it necessarily was while we were slogging through the worst of it.  The realization that we. almost. lost. him. is weighing incredibly heavily on our minds and the commentary from our pediatricians over the past twenty-four hours has only solidified our terror rather than pacifying our in-the-moment fears:  

* Yesterday we overheard one of our doctors brief the group of rounding residents about FG's progress before she came in to fully remove him from the cannula.  As the oldest practitioner in the office, Dr Clapp has seen her fair share of RSV cases in her forty years of practical experience.  "But," she says with stern authority as she points to FG's room, "this is the worst case of RSV in a two week old that I have ever seen."  

* Then this afternoon, upon finishing his final exam and just before signing the release papers, Dr. Fox - the same practitioner who initially saw FG before calling 911 on February 26th - was bantering happily with HB when he casually expressed his sincere relief and surprise that FG made it through the first night at the hospital.  Not having realized how close to death our health care providers considered our son to be, those initial hours of overwhelming ignorance and shock feel all the more painful in hindsight despite the distance we're placing between ourselves and that time and place.   

It's only now that I am sitting here in the living room watching FG peacefully sleep in his baby swing that I have begun to comprehend what those words mean and the implications of their occurrence.  Heck, it's only now that I am fully processing the meaning of the repeat question we'd received about  altering his baptism schedule. The little life of my newly one month old could have been taken from him and the glue that his presence is that my life together could have vanished.  I do not know the soul-consuming grief that it must feel to loose one's child, but the empathy I have from this near death experience for those who have... leaves me breathless and at a loss for words.   

There is no fiber of my being that I wouldn't trade to save him were I to choose him or me.  There is no amount of holding and hugging and kissing of this baby that will be enough to satisfy the physical manifestation of my love for him.  There is nothing in my life that is more important nor is there anything else that I have or will contribute to the world that I am as proud of than him and his siblings.  I cannot bring myself to the mental brink of disaster that the "what if" question presents, but, thanks be to God, today is not a day that I need to find out the answer to such a horrific question.  

Resting post hospitalization.

Friday, March 6, 2015

Transferred to Peds

HEAR YE, HEAR YE!  We have great news!! After six days in the PICU, FG was finally considered stable enough to be transferred to the regular Pediatric Unit of the hospital two evenings ago.   Having reduced his oxygen levels down to 4 Liters and 21% - which is equivalent to what we're breathing plus a slight puff of humidified pressure to ease his work of breathing - the Intensivists took out his feeding tube, allowed me to nurse and decreed his stats no longer warranted intensive care.  

THANK GOD!

Now that we are over on the regular floor, FG is back under the care of his regular pediatrician's office and one of the attending physicians will be visiting him daily until they decide that he is ready to be discharged.  Finding that he is still having some difficulty breathing - he is continuing to bob his head, retract around his clavicle and in between his ribs, work quite hard to nurse and gasp or wheeze when his oxygen is reduced too much - the main doctor following his case has prescribed a reduction of 0.25 liters of oxygen per day to ensure a slow and smooth return to unsupported respiration.  We understand this is exceptionally slow and, as such, we've been battling the residents who continue to aggressively come in and attempt to fully remove his oxygen, but with understanding nurses, a gigantic "DO NOT TOUCH HIS OXYGEN!" note on his file and a respiratory therapist visiting two times daily he continues to get the care that he requires despite the occasional treatment plan battle.

One of the respiratory therapists has submitted a request for us to receive a specialized consultation with a pediatric pulmonologist in the next few days, so that examination will provide quite a bit of comfort and insight into what we're still dealing with and what we have to look forward to upon returning home.  It is my understanding that this lung specialist is one who is quite familiar with our pediatrician's office, so I am relieved to be broadening our long term health care team for the better.  We shall see what comes of his visit.

The final bit of good news to share is that, since we're no longer in the PICU and barred from receiving visitors under the age of 12 years, FG and I are finally able to see and hug his siblings.  Having only seen them over Skype (I still haven't left the hospital and likely won't), GW, GV and Grandmama were a very welcome addition to our otherwise monotonous environment.  They were quite curious about the medical gadgets, how to "order" toys via the call button, what cookies were deliverable with our dining trays and that allusive magical question of "when can he come home?"  We've assured them that discharge will happen and that it looks like it will be sometime next week . Quite adorably, they reassured us that homecoming can't happen soon enough to suit their tastes as they miss their (their emphasis, not mine) baby brother.

Me too, kids, me too.



Tuesday, March 3, 2015

So what is RSV?

I’ve been writing about it for a while now, but what exactly is RSV?  Have you heard of it? No? Not surprised, neither had I.  

Respiratory Syncytial Virus, or RSV, is as common as the common cold — in fact, it’s so common that most of us get it each year and merely acknowledge it as a prolonged, miserable cold rather than by name.  But while RSV can be dismissed with a few tissue boxes and a degree of annoyance by us adults, little guys with little airways are at a greater risk of complication and may require hospitalization due to the severity of its symptoms.  What makes it all the more terrifying, in my opinion, is that most of us aren’t even aware of RSV as an illness until we’re standing in the ER confronted with it in it’s full severity despite the fact that the CDC reports that all children - and therefore all parents - will have had at least one RSV infection by their second birthday. 


When a child is exposed to the virus, it takes 3 to 6 days of incubation before symptoms really begin to appear.  Initial symptoms of RSV are consistent with a minor cold:  runny nose, decreased appetite, cough, sleepiness and irritability.  Although this is sometimes all that occurs, in premature babies and infants under the age of six months the virus’ mucus begins to build up in their tiny airways and inhibits their ability to breath. So as the virus keeps escalating in severity until day 5 to 7 after symptoms first appear, it isn't surprising that the CDC reports as many as 25 to 40 of every 100 cases progress into full on respiratory infections such bronchiolitis or pneumonia with additional symptoms of fever, wheezing, rapid or difficult breathing and a blue-gray “dusky” tinge to their skin due to a lack of oxygen.  And seeing as infants are unable to adequately move mucus from their lungs on their own and home suctioning techniques have a limited scope of efficacy after a certain point in the virus’ intensification, it is estimated that there are over 125,000 infant hospitalizations for RSV in the United States on an annual basis.  And out of these acute cases, as many as 25 out of every 10,000 cases result in the death of babies under the age of 12 months. 

For those children who survive the average 1 to 3 week hospital stay for RSV(+), the long term consequences for such early exposure to it leaves them vulnerable to repeat infection and additional medical complications later in life, particularly asthma.   Unfortunately because RSV is a persistent virus that is contractable at any time of year there is no slack time for these little ones to develop their lungs and airways without risk of exposure — HOWEVER, there is a much lesser likelihood for those babies born between the months of May and September to become infected as newborns (defined as birth to 3 months of age) whereas those babies born in “peak season” are not only more likely to become infected but to suffer from repeat infections within the October to April timeframe.  For late RSV season babies like FG, the risk of infection does diminish for the summer months, but as they’re still infants for the majority of the subsequent RSV season and their respiratory systems are left vulnerable from the first infection, their risk for another severe infection is again heightened and worthy of professional concern.  

So, what can we do about RSV? 

Treatment wise, you’ve seen pretty much what there is to offer with the support FG is currently receiving:  external oxygen, breathing treatments and suction.  Premature babies under the gestational age of 32 weeks may be able to receive a drug by the name of palivizumab that can help prevent the development of serious RSV, but it does not outright prevent infection with RSV and it cannot cure or treat children already suffering from RSV.  It is also good to know that for the majority of older babies insurances do not cover the palivizumab and it is, unfortunately, largely cost prohibitive without their financial aid.  Prevention is then the only thing we as caregivers and responsible communities can address.  

So how do we prevent RSV?

* Avoid exposure. Limit your contact with people with fevers or colds, this is especially important for premature babies and all infants in the first two months of life.  Indirect or direct contact with infected nasal or oral secretions (i.e. through kisses, shared drinking glasses or “high touch” objects) causes avoidable transmission. 

* Avoid transmission.  People infected with RSV are contagious for 3 to 8 days, however, some babies with weakened immune systems can be contagious for as long as 4 weeks.  If possible, children and adults demonstrating infectious behavior should refrain from participation in group environments and contact with high risk populations: infants, children with compromised immune systems and the elderly. Techniques to avoid transmission include: 

* Wash your hands frequently.  Do so particularly before coming into contact with babies, before and after exposure to large groups of children in a school or day care environment, and teach your children the importance of hand hygiene.  It is also a good idea to avoid touching your face between opportunities to wash your hands. 

* Cover with your elbow when coughing and sneezing. RSV can be spread when an infected person coughs or sneezes into the air, spreading virus-containing droplets that linger in the air and contaminate surrounding surfaces.  Other people become infected when the droplet particles contact their nose, mouth or eyes.  

* Keep things clean.  Make sure that all “high touch” surfaces in your home are regularly disinfected; such surfaces include kitchen and bathroom countertops, sink faucets, doorknobs, stair railings, toys and phones.  Also ensure that all used tissues are properly discarded right away. 

* Further proactive prevention techniques include avoidance of crowds, consistent disinfection of children’s toys, regular washing of bedding and clothing, distinction between “outside” clothes and “home” clothes for older siblings.  Also enforce zero tolerance for smoking in your home and around your baby as infants who are exposed to tobacco smoke are at a higher risk of contracting RSV and more severe respiratory infections. 


So what?

At this point in our crash course education on RSV, HB and I are feeling thoroughly flummoxed that something so common and universally applicable could be so utterly foreign to us as parents and as self-identifiying educated, health conscientious Americans.  I mean we pay close attention to what preservatives and chemicals go into the food we purchase, we know the difference between a carbohydrate and sugar, we use sunscreen, we model healthy exercise behavior for our children, and they regularly wash behind their ears... and yet, the sniffles have completely taken us out at the knees.  The post-traumatic correlation between ignorance and guilt that is besieging my conscience as I stand here watching FG breath in his sleep is enough to bring out the white flag of surrender and promise this little guy a lifetimes supply of cartoons and chocolate to make up for what, I feel, is an unacceptable oversight on my part.  Instead of feeling retrospectively slothful, I could have done more of the preventative steps to ensure his safety... and instead of being blind sided, I could - should - have known what we were up against and recognized the signs of danger sooner than the eleventh hour.

But, all self deprecation and guilt-assuaging aside, I know the enemy now and I sincerely want to take this opportunity to get the word out to you brave souls resiliently reading my rambling because, Lord help me, RSV is the worst thing I've endured -- and I'm not even the one who is sick!  RSV is no joke and, even if you aren't around a little guy on a daily basis, I guarantee someone you come into contact with is and they - we - cannot afford to see something as seemingly harmless as a "cold" rip our world asunder with the loss of that which is most important: our children.  Please educate yourselves and those around you about the Respiratory Syncytial Virus and, as a village, help keep these little innocents safe from this all too real, all too prevalent boogieman.

To learn more about RSV please check out these additional resources: 

        * The CDC website for RSV prevention and treatment as well as their Podcast by Dr. Eileen Schneider

        * The comprehensive RSV Protection website for premature babies and infants

        * The Mayo Clinic definition and explanation of RSV symptoms, risk factors, complications and treatments


Sunday, March 1, 2015

PICU Update

Last Thursday evening, FG was admitted to the hospital with RSV, bronchiolitis, a partially collapsed lung and a whole list of "could be, so we'll treat for it to be on the safe side" illnesses.  Initially put in an isolation room on the regular Pediatrics floor, the first several hours of treatment and attempted stabilization demonstrated that FG had a greater need for external support than the wing could provide and necessitated that he be transferred to the Pediatric Intensive Care Unit.  Moving over here first thing Friday morning, we've been camped out here ever since watching his little chest rise and fall.  I have yet to leave his side for more than the occasional trip to the bathroom (which is soberingly located over on the Pediatric Oncology Unit) while HB has made the long trek home a few times to check on Grandmama, GW and GV.  They, thank God, are hanging in tough with support from some wonderful local families (SP, you are an angel), but it's tough explaining to them what's happening here as things with FG are still quite tenuous. 

Beginning his treatment with 8 Liters of heated, humidified High Flow Therapy at 40% FiO2, the PICU Intensivists have explained that it's still too early to know where FG is in the 10 to 14 day life span of the Respiratory Syncytial Virus.   Knowing the worst symptoms typically come between days 5 and 7, the doctors are unsure if he's past the peak and will remain as he is for a few more days before progressively getting better or if the worst is yet to come...  as he is currently maxing the High Flow treatment option, we're playing the high stakes game of wait-and-see if escalation to the CPAP (Continuous Positive Airway Pressure) mask or intubation becomes necessary over the coming days. In the mean time, the doctors have started an EZPap therapy that uses positive airway pressure to force lung expansion and reinflate his collapsed lung as well as an almost constant routine of nasal and deep suction to remove excess mucus. You can imagine how miserable both of these treatments make FG... poor little guy.

We're also struggling to keep his feeding tube accurately placed in his stomach.  His many leads prevent him from wearing the hospital's mitten-onsies and, with his fingers exposed, his comfort position of his fists near his cheeks enables his ninja-like paddy paws to pull both the cannula from his nose and the feeding tube from his stomach.  And while I'm concerned about the bright red, raw color of his cheeks from the abrasion of his cannula's adhesive, the constant delivery of oxygen and his ability to stay hydrated and nourished trump the superficial irritation and have required some ingenuity with socks and careful use of A & D Ointment to address all of these concerns.  I'm sincerely hoping that the socks will at the very least save him from the unnecessary discomfort and additional radiation needed to insert the feeding tube for the fourth time.


One bit of good news at this point is that the final results of the spinal tap culture came in earlier today and the doctors now know that he is not sick with bacterial meningitis as they initially feared.  As illnesses of this kind of severity move incredibly quickly in babies this young, the ER doctors didn't want to loose critical days waiting for the results if the tests had been positive so they'd placed him on a multi-day course of a broad spectrum antibiotic that would kill any and everything that could possibly be making him sick.  As we're now certain the cause of all of this is viral, I'm thrilled he'll be skipping the next couple doses of medication as only time will tell how his body and the good bacterial will respond to such strong antibiotics.   

More to follow.  

Saturday, February 28, 2015

Emergency Hospitalization

As the mother of three, I came out of the delivery room onto the maternity wing of the hospital as a well seasoned, veteran parent.  Treated far more deferentially than a first time mom by the nursing staff, I was given space to do my thing with our newborn and, right from the get go, I felt confident and comfortable with my knowledge, skills and the idea of introducing our latest addition to the wide world.  And given all of the experience his active, outgoing and curious older siblings have provided us over the past five years, I doubted there was anything that would surprise me as we brought home our perfectly healthy, full term baby boy.  

Unfortunately, I was wrong. Horribly, horribly wrong. 

GV circa 02/2013
While we were at the hospital for the induction and post-delivery day, our oldest boy came home from his Valentine’s Day party with a bit of extra pre-school love in the form of a cold. Congested and occasionally coughing, it didn’t raise any significant red flags when he shared his germs with our daughter (sure, they fight over the train, but this they share) and she too came down with a case of the sniffles.  Knowing it’d be unpleasant for the baby to need aspiration, we asked the big kids to wear masks and wash their hands, but despite our best efforts to contain their symptoms, their excitement about the baby resulted in not only the introduction of them, but of their congestion to FG as well. Starting the sick-little-guy routine, we turned on our humidifiers, administered saline and sucked the increasingly green mucus from his tiny nose with the notorious, yet incredibly handy NoseFrita (and, for the record, the poor kid does not like aspiration the way GV did).  So already sick for the first time going into his two week well-baby appointment, the pediatrician discovered that FG had a nasty ear infection to which she prescribed an antibiotic and instructed us that “if he’s not better after 24 hours or if he develops new symptoms, call back.”

Later that afternoon, HB and I found ourselves independently looking at FG thinking that his color wasn't quite right - he seemed almost grey.  Finding a change in position to resolve the issue or that the artificial lighting from one room to the next was largely to blame, we administered his first dose of antibiotics in hopes that the medicine would diminish his symptoms by the morning thus calming our overtired nerves and trigger-happy fears.  Sharing our concerns briefly before bed, we agreed that FG wasn't demonstrating other red flag behaviors - poor nursing, infrequent diapers, difficulty waking up and ferver - and that we'd keep a close eye on him if and when things changed.

The following day, I attempted to nurse FG every so often but found his latch to be weak (he'd had a frenulectomy at his well baby appointment the day before, so I wasn't terribly concerned) and his general demeanor to be sleepy.  Given that he's still quite new and supposed to be sleeping a lot, I didn't begin to aggressively attempt to rouse him until early afternoon.  Using our typical wake-'em-up tickle up the spine or diaper change tricks to no avail, I told myself not to panic and I began to escalate my pestering techniques - ultimately putting his head directly under running ice cold water - only to have eye lids flutter in minimal response before returning to a deep sleep.  When HB walked through the door shortly there after, I presented FG to him and, while difficult to be sure given the overcast, grey light of the day, we agreed that his color was off again and that the confluence of symptoms he was presenting warranted a follow up call to our doctor. 

With a "come directly here or get to an ER if things get worse" response from the triage nurse, HB hastily buckled our baby into his car seat as I scrambled to get our oldest to tell Grandmama we were leaving - immediately.  Sitting in the back seat of our car watching for any change to his breathing patterns, HB ignored the speed limit on I-95 and got us to the doctors office in about two thirds of the time it usually takes to get to NOVA.  Dropping me at the front door with the car seat, I bit back tears of fear as I impatiently rode the elevator to the right floor.  Walking in, the receptionists didn't ask who I was but quickly glanced at FG and said to "let the doctor know he's here." 

Escorting me back to an exam room, the nurse began to run through the typical baby appointment routine: "Okay, let's have you take off his outfit and get down to a dry dia..."  But she cut herself off mid-sentence and dashed from the room.  Seconds later three other nurses and the pediatrician were entering the tiny room with muddled looks of it's-okay-mommy/holy-shit on their faces.  Ordering for oxygen, a nebulizer and a pulse oximeter, Dr Fox held a stethoscope to FG's chest as HB joined me in the exam room.  

Directing his comment to a nurse "His pulse-ox is 61.  Call 911."

The next several minutes were a blur as firefighters and paramedics streamed into the room with what seemed to be an endless repetition of questions as they loaded FG back into his carseat and prepared to take him by ambulance to Fairfax INOVA.



The last time I rode in an ambulance was when I had the placental abruption during my second pregnancy and, while that was scary, this trip was far worse.  As the patient, all you can do is lie there, watch the lights and attempt to remain stable with whatever willpower you can muster; but as the caregiver who is, literally, along for the ride it is the most helpless, terrifying experience ever.  Just listening to the sirens blare and watching the other vehicles through the back window as they jockeyed to regain their spots on the road made me realize the preciousness of time and unleashed a torrent of regret and what if's... regret about not bringing him back to the doctor the previous day and not going directly to the Emergency Room... and what if... if... if...    

Upon getting to the Pediatric ER at Fairfax INOVA, a team of nurses and physicians swarmed our son.  Informing us that they were completing a full respiratory work-up and beginning worst-case scenario treatments to stem any serious illnesses before they have a chance to gain a leg up on treatment options, we could only stand by and attempt to comfort our baby as the doctors took x-rays, ran an EKG, took blood samples and drew a spinal tap.  


With cables and cannulas, needles and vials, cuffs and Lord knows what else coming and going from the room with various scrub-clad personnel, HB and I were in an overwhelmed trance when a sort of celebratory "whoop!" went up as a nurse reported some results to the team attending FG:  "RSV POSITIVE!" 

Taking us aside, one of the two pediatric trauma physicians in the room explained:  "So what we're looking at here with Baby F is a case of RSV - Respiratory Syncytial Virus - which is pretty serious, but the best answer we could hope for; okay? From what we can see on his x-rays, he has a partially collapsed lung which is typical with this disease and, since this is viral, there really isn't anything more than oxygen that we can do to get him through this. We're ordering him a bed upstairs right now and, hopefully, you'll be able to go home sometime next week." 

... processing... processing... processing...  

Our two week old has a virus that just caused one of his lungs to collapse, to loose almost 40% of normal oxygen saturation and to require a cannula to keep him breathing until it passes?  Right, gotcha. 

He's been upstairs in the Pediatric Intensive Care Unit (PICU) for a day now and, while he appears to be stable, I can't help but perpetually rationalize to myself that the ICU isn't some place they send patients as place holders... The reality is he's sick.  Very, very sick.  He needs oxygen via cannula to breathe which, preventing him from nursing, requires a feeding tube  into his stomach.  He is on a one nurse to two pediatric patient ratio and is visited at least four times a day by an intensivist attending or resident... in other words, he's exactly where he needs to be, getting the exact care that he requires and all we can do is wait for the worst to be over.

We simply pray that is soon. 


Saturday, February 14, 2015

3 Minutes. 9 Pounds. No tearing.

So I have someone simply wonderful and absolutely perfect to introduce to the word: FG!


Born on Wednesday, February 11 at 3:55 AM, he surprised everyone on the labor and delivery floor by coming hours earlier than we anticipated.  Starting the Cytotec, a cervix ripening drug, at 9:00 PM, the nurse briefed the treatment plan that I would receive another dose every three hours until 6:00 AM when I'd have the option of an epidural before starting Pitocin at roughly 7:00 in the morning. Not having decided if I wanted an epidural this go around or not, HB and I nodded in acknowledgment of the schedule as we followed the nurse out into the hall way to begin our ritual of walking the baby out.  

Getting a bit too crampy and too tired to continue our laps by 11:30, we went back to our room where the nurse began to encourage me to take a dose of Ambien and Tylonal so I'd be able to sleep comfortably after receiving my next dose of Cytotec.  Decline both of these medications, the nurse administered the second dose of Cytotec and reported that I was slowly progressing and only 1 cm dilated before turning out the lights and leaving HB and I to a) stew about my lack of progress and b)  sleep.  

A little after 1:30 in the morning, the contractions changed and I couldn't sleep through their frequent and rising intensity.  Thwacking HB with my pillow to get him to wake up (did he take my Ambien?), he helped me to the bathroom and gradually began to look at me with consternation as I went from "me" to "cranky" (his words, not mine).  Attempting to breath my way through the pain, I finally asked HB to go ask the nurse for that dose of Tylonal she'd offered... finding that she was on break, the back-up nurse assigned to my room, Debbie, came in with the small pills and immediately asked if I wanted to consider that epidural. 

Feeling like a complete wimp for not having made it remotely close to 6:00 before giving in on the pain and accepting the drugs, HB translated my non-comprehensible grimace and whimper as an articulate "yes, please" and the nurse called for the anesthesiologist at 2:45.  Gathering supplies and bouncing back and forth from the hallway - before double checking my dilation - it was 3:30 by the time the back-up nurse began to register the look of concern on my face and  helplessness on HB's. 

As the anesthesiologist began to prep by lumbar spine for the epidural placement, I was beyond my own abilities.  Unable move due to my own tension, HB and Debbie helped me sit up and breath calmly though the first series of needles. Looking at Debbie the whole time, I told her in no uncertain terms that "I feel like I need to push - I'm not - but I feel like I need to."  Having not checked my progress yet, she had no idea what we stage of labor we were actually looking at and could only respond by parroting that I not push.  Within a few seconds of the large gauge needle being inserted into my spine, however, I couldn't wait for the actual medication to be administered and I flat out said "I don't trust myself - I have to push NOW!" 

Helping my lie down, HB and Debbie found the baby fully crowning.  Sending the anesthesiologist into the hall for reinforcements, he returned a moment later with the closest thing he could find to my doctor: two random residents and my primary nurse.  With minor instructions and as much encouragement they could find amid the general shock of the unexpected, the baby's head, his shoulders and then his body along with ALL of my amniotic fluid were out within 3 minutes.  Without tearing. 

Unfortunately for the residents, it was only after my water broke following delivery that the nurse remembered to state: "Oh, yeah, she's poly."  

Collectively feeling like what just happened was completely surreal, the nurses quickly began working on the Baby - who didn't start crying immediately - as the residents cursed the late arriving polyhydramnios warning as they delivered the placenta and collected the pieces necessary for our cord blood kit.   

"Holy cow! He's nine pounds and sleeping!" laughed the nurses from the warming table.

Bringing him over to me, the nurse casually informed us of the NICU nurse lurking in the hallway due to FG's low blood sugar levels of 34 mg/dL.  Having talked with our nurse earlier in the evening about our intent to correct his hypoglycemia ourselves with nutramigen upon birth, she bought us some time as HB held our newborn skin-to-skin on his chest and dripped the formula drop by drop into the baby's mouth.

Requiring that FG's blood sugar above 50 mg/dL in order to prevent his admission to the Neonatal Intensive Care Unit, it was half an hour later that we anxiously watched the nurse prick his heel and apply his blood to the glucose strip.  Feeling like the resulting two seconds of processing was closer to two hours, there was a collective sigh of relief when the number 51 finally appeared upon the screen.  Happily dismissing the NICU nurse to return to her other charges, the labor and delivery team put our paperwork together and transferred our care to the maternity ward where we were generally left in peace by the staff given our "veteran" parent status.

Spending the following 24 hours going through the typical newborn routine, he received his first round of vaccinations, his hearing exam (which, unfortunately, he failed), bilirubin checks (slightly elevated) and his first pediatrician visit.  The pediatrician indicated some concern over his red color (likely a result of elevated hemoglobin levels) and his hips clicking (likely caused by his position while in utero), but indicated that the various abnormal results could be resolved with time or on an out-patient basis.  Otherwise granting a clean bill of health, the doctors found FG fit enough to  earn us a discharged ticket home.

Now that we're here... life with three kids will certainly take some time for us to get accustomed.  Upon walking in the door and introducing the baby to big brother GW and big sister GV, we found ourselves swimming in the deep end as FG promptly peed on the couch mid-diaper change as GV went into a full-on overtired two year old tantrum and GW raced about the house showing off his latest drawings and demonstrating his race car speed for his new brother (it was only on lap number three that he slipped on the hardwood in his socks and began to cry after careening into a cabinet).  I think things will be just fine when we develop our new rhythm, but for the mean time, I'm going to let the contentment of my post-delivery glow and a touch of mommy-brain carry me through.

Happy, happy, happy Mama!