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.

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. 

6 Months, already!

I feel like I am that stupid groundhog in Punxsutawney, Pennsylvania.  I've stepped blinking out into the spring sunlight and instead of spotting my shadow as I expect to see it (for it has, after all, been spring for sometime now), I've found it much altered by my companions.  No longer is my little boy little and my bitty bundled newborn bitty, but rather there is a tall beanpole and a bouncing (literally) baby in their place.  I'd much prefer to think of my "blink" as more Rip Van Winkle-esk than admit that time is flying as fast as it is, but when reality is measured in growth spurts and a handful of months mark milestones that years or decades mark for us adults, I humbly acknowledge my preference is irrelevant.

Six months have passed since November and my two little wild flowers - for they certainly are not weeds! - are ever so much more of themselves in personality and in substance than they were.

Top: "What's she doing?" on December 2, 2012
Bottom: Pre bedtime exchange on May 7, 2013

Today was GV's six month well baby appointment which she cooed through with flying colors.  Measuring in at 26 inches in length, 17 pounds 11 ounces in weight and a head circumference of 17.5 inches, she continues to keep near the top of the growth charts. Of course she wasn't exactly pleased to have her vaccinations, but with some clean shaven snuggling from HB (a much appreciated break from his "too scruffy" face) she was back to her sweet, smily self within minutes.

Left: Hospital snuggle with HB on November 28, 2012
Right: Oh so fashionable road trip on May 23, 2013

She's not quite ready to start crawling yet and her little teeth haven't broken through as of now, but I'm expecting that by the time we get to Vermont in late June she'll be on full throttle in every direction.  I'm not too eager for her to be starting the next phase as I thoroughly love this snuggly, immobile age, but the way she is increasingly interacting with and venerating her older brother makes me wake up each morning wondering what "aww moments" the passing days will bring.  They so key off of each other and it warms my heart the way they exchange smiles at the mere sight of one another and laughs with each play session.

I often tell GW how much I appreciate his help with his sister, but I've got to brag about how much of a God send GW is to this tired, frazzled Mom.  For one thing, back in December he learned the words to the Christmas carol "Jingle Bells" and, on top of the overly adorable rendition of the song he does, he figured out that when he sings this to GV she - no matter what - stops crying.  Much like his infant response to Edith Piaf, she instantly ceases screaming and watches him "dash through the snow on a one horse open sleigh" with glittering eyes and complete adoration.

He also is teaching her to bounce.  Previously, when I'd place GV in her bouncer seat she'd sashay her weight from foot to foot and then scream until picked up.  But when GW began to fiddle with the toys around the seat and bounce in front of her with the encouragement "bouncy baby, bouncy baby!" she pushes both feet into the floor and squeals with harmonic glee.  Freeing my hands for a moment or three, I send a silent prayer of gratitude upward for such invaluable help and all around happy sounds.

While I cannot peer into the future and guarantee an everlasting bond between these two, I ardently hope they continue as they have started.  I hope they aren't too eager to grow out of their already becoming too small size 5T and 9Mo clothes and into the fads of their generation, but such is life and one day - I pray not too soon - they'll have independent lives and families of their own.  Between now and then, I hope my groundhog like self will miss my shadow once and a while and drag out their childhoods for as long as God will allow.  I'd be lying if I said it was entirely rainbows and poptarts, but  I'll take the bad with the good and love them regardless.

Left: GV home coming on November 29, 2012
Right:  sweet snuggle on May 15, 2013

4 Month Check Up

Left:  First family walk, December 4, 2012; GV one week old.
Right:  An everyday snuggle, March 20, 2013; GV week 20.
Oh my goodness. 

You know how some parents mistakenly turn away for a moment and find that when they come back their babies have rolled off the couch and are lying somewhere under the coffee table? Well, I know not to leave the baby unattended, but some how I turned around and inexplicably found that my little bitty baby isn't where I left her ... and in her place there is a gorgeous four and a half months old.  It doesn't seem like so many weeks have passed, but GV is 18 weeks old already and there is officially nothing about her that resembles a new born babe.  She's able to bear all of her weight when standing if you provider her balance, she giggles when you tickle her chin, she smiles whenever GW interacts with her and, even with her first tooth coming in (top right, poor thing!), she cries rarely.

She's turning into Little Toughie, Jr. 

We took her up to see the pediatrician this morning for her four month check up and, despite a mild case of cradle cap and a lingering cold, she's doing remarkably well.  She's growing and developing like any healthy baby ought to -- today she measured in at 16 pounds 1 ounce (96%), 25 inches tall (85%) and a head circumference of 16.5 inches (75%).   That's just shy of ten pounds in weight gain, 5 inches of added length and a whole three inches in head size since she was born in November!  So regardless of the complications that happened in the pregnancy, diabetes related or plain and simple bum-luck, she appears to be unphased by inutero trauma and perfectly thriving.  Thank God!

I must admit, however, we are having one problem with her...  With a beautifully even temperament and wonderfully chubby cheeks, GV is regularly accused of being "fake."  Because she's more often than not quietly, comfortably just watching the world around her from the safe vantage point of our arms or laps, passers by often jump (seriously) in surprise that our doll is "OH MY GOODNESS! REAL!" I have no fricking clue why people so regularly think that we'd burden ourselves with actively parenting a baby doll when we have a very, very active and curious 3.5 year old to wrangle, but given the fact that there are those out there that pay good money for life like, adorable baby dolls I take it as a complement that they assume my GV is perfect enough to mistake her for a dolly!

12 Weeks

I cannot believe that GV is twelve weeks old already, time is just flying by.  She's growing beautifully (up to 14 lbs 6 oz) and is a gorgeous roly poly, chubby baby who is full of big smiles, adorable "ah-goos" and, in her opinion, all too many hiccups.  Although she has her moments, I feel thoroughly blessed that she is such a sweet, happy baby!

The last couple weeks have been rough on her though -- all of us actually -- because each of us have had the winter scuzz.  Despite our best efforts, we've played hot potato with these germs and, considering her tiny immune system, it seems like GV is bearing the brunt of it with a significantly congested nose.  She hasn't been running a fever or anything super serious, but when your three month old baby sounds like a snuffleupagous and develops a previously undiscovered knack for screaming you're justified in excess concern.

So with this in mind and hearing GW's wet cough, I took both the kids up to the pediatrician this past Friday to make sure that they weren't developing something more serious than whatever this blah started out as.  Reassuring me that it hadn't gone to their lungs and that their ears still looked fine, the doctor suggested I give GW honey for his cough and that I try a Nosefrida on GV.  Well, as you can imagine, the spoon full of sugar went down smoothly with GW but I struggled with the "snotsucker."  This thing is designed so that you place the end of a tube against your infant's nose and use a mouth piece to suck out whatever is blocking their nasal passageways.  Well, I must not have much in the way of lung capacity or something because I found that sucker to be extremely difficult to use.  I think it'd probably work well for a simple runny nose, but for the full on congestion GV has going I am having to rely on the good ol' bulb syringe.

Course I am sure most parents out there are familiar with the screaming, unhappy baby that goes along with the use of an aspirator -- but for those who don't have first hand knowledge, just imagine snot being forcibly sucked from your nose and the disgusting tugging feeling that must accompany it (there's a reason we don't remember these things from our own childhoods).  Well, oddly enough, my beautiful little weirdo here likes it.  She gets all sorts of excited when she see me pull out the aspirator and, although I know she's not developmentally there yet, it's almost like she already rationalizes that it's good for her and that the discomfort is a temporary solution to her problems.  Granted she gets annoyed after a while and gives a good "waaaaaaaah" to let you know she's done, but the picture says it all folks.

Weird, right?  I'll take it, but that is absolutely bizarre.

You know, in a lot of ways, GV reminds me of her brother when he was a little guy.  He wasn't a fan of having his nose cleaned like she is, but otherwise they have a very similar temperament -- and given that he is turning out to be a very kind, thoughtful child I am over the moon about this!  He's adjusted to his big brother role so well, I am very proud and grateful that he is who he is.  (Yes you, GW.)

Of course, I must say, he's shocking the heck out of me right now with his growth spurts.  Since the beginning of January, this kid has grown half an inch (42" tall now) and he's officially out grown toddler size shoes.  Now wearing a boy's size one there is only a four centimeter difference between the size of his feet and mine.  He is three. I am two weeks shy of 27 years old.  How ridiculous is that?!

Whenever we look at height predictors that estimate how tall your child will be when full grown as an adult, the math comes back that GW will be somewhere around 6' 6" give or take two inches for a margin of error! Can you imagine trying to feed a teenage boy who will likely be between 6' 4" and 6' 8"?!  I can't... perhaps I should just purchase a supermarket.

They are great kids.  I wish there was something more I could do to make them feel better right now, but I'll admit I appreciate the scuzz induced extra snuggles.  Some day they'll be too big and they wont want their Mommy to dote on them or stick an aspirator up their nose when they're sick... but even with as big as they're getting, that day isn't today and, for that, thanks be to God.

Two month update

GV is two months old already.  I don't really know where the past eight weeks have gone, but they have and, to be honest, the drama of the pregnancy feels like years ago. Our life with GV around feels so natural and normal - albeit crazy at times, but that is typical.  We've found a battle rhythm that seems to keep everyone happy, most of the time, and despite GW's lectures to GV that she "needs to poop in the toilet, not the diaper!" I think they're doing remarkably well together.  He is very eager to help out with her and she just lights up whenever he is around - lectures and all.

We took GV into the pediatrician today for her third well baby appointment and, despite the tears she shed over her three vaccinations, I am glad to report that it went really well.  She's a very healthy, happy baby and the doctor had nothing but positive things to say about her development and growth.  Check out her stats:

Weight: 13 pounds 3 ounces (96% up from 22% week two)
Length: 23 inches (75% up from 50% week two)
Head Circumference: 15 3/4 inches (81% up from 26% week two)

Despite the diabetic baseline and the number of additional complications we had in the pregnancy, it seems that the care I took to make sure she'd be safe both in utero and after birth paid off.  She's a perfectly normal baby and that is the most any mother - diabetic or not - could hope for!  I just continue to pray to God that she stays healthy, happy and safe for her whole life... and may it be a long one.

 

Love you GV - xoxo

Newborn GV

So in the last post I think I got the point across that despite all the concerns that labor and delivery itself went well and that as of 10:12 AM on November 27 HB and I have a daughter.  Yes? Okay then, moving on!

Once she was out, the nurses began their typical new born checks and double checks and successfully reported that GV scored highly on her APGAR and has ten fingers and ten toes (which after 21 sonograms was redundant, but still good news).  But seeing as I am not a normal mother, they had to run atypical checks on her as well to make sure she was healthy diabetes impact wise.  Course I knew that was coming and had worked hard to mitigate the worst case scenario with tight glucose regulation during labor (see my "Induction Begins Tonight" blog post for an explanation), but checking her blood sugar regardless of my control was just the responsible medical thing to do.

Pricking her little heel, the nurse applied the Accucheck test strip to the blood and reported a bg reading of 41 mg/dL for newborn GV.  While I would consider that number dangerously low for me, any number above 40 mg/dL is considered to be normal for newborn babies; in other words, she was borderline and verging on hypoglycemic despite my efforts to ensure her glucose would be in a safe range.  Hoping her sugars would go up on their own, the nurse handed her back to me for skin-to-skin time, immediate nursing and explained they'd need to check her sugars again in 30 minutes.

Holding that little baby and keeping her safe in my arms after so many months of worrying felt phenomenal... but in what felt like mere seconds after handing her to me the nurse was back to check GV's sugars again.   With HB supervising and being my emotional proxy, the nurse started the whole process again and pricked her heel.  The meter read 32 mg/dL.

Shit.  (Pardon my french).

Asking the pediatrician for a call on whether she needed to go directly to the NICU, the nurse reported back that GV's hypoglycemia wasn't "bad enough" to warrant a trip to the second floor but that we'd need to get her on formula right away.  Because a new mother's breast milk doesn't come in for two to three days after delivery and colostrum doesn't contain much in the way of glucose, we grabbed our Nutramigen formula and I tried to get at least an ounce into her before the next bg check in 45 minutes.  Warning that if her bg wasn't up by then we'd need to take "alternative measures" (aka the NICU), the nurse wished us luck and left us to it.

Fortunately, if there is one thing this kid does well, it's eat!  By the time the next check came around she'd gone up to 53 mg/dL!!  Unfortunately, they had to have a minimum of three readings over 70 mg/dL so even though her sugars were in the right range, the nurses on the "Family Centered Care" floor had to prick her several more times over the next 12 hours for record purposes -- all of which, thank the Lord, were in the perfect range.

But would that be the end of it?  Heck no -- that would be far too easy of an ending to an otherwise medically stressful pregnancy.

So we get up to the 7th floor recovery unit and we learn that GV's bilirubin levels are excessively high for a few hour old baby at 6.8.   The pediatrician initially said that they'd just keep an eye on it and see how she responded to simply being fed, but if the levels weren't better the following morning that they'd need to put her under the ultra violet lights for 24 or more hours.  I tried my darnedest to feed her  and combat the onset of jaundice (at 38 weeks, really?!), but the next morning her bilirubin levels had risen to 8.4 and the pediatrician made the call to get her under the lights.

I know even "normal mothers" have to put their babies in the grow box sometimes - heck even my husband had to go in it when he was born - but after everything this complication was simply one I hadn't emotionally prepared myself for.  I braced myself for all the plausible diabetes and abruption complications, but jaundice? It hadn't even crossed my mind.

Only able to take her out every three hours for a brief feeding, we sat up the entire night on Wednesday watching her tiny little chest rise and fall with each breath.  Feeling helpless to fix the problem, we waited for five o'clock Thursday evening to roll around and the defining bilirubin levels check to be completed.  If the labs showed that her levels were still high, I'd be discharged and sent home while she'd remain hospitalized in that incubator, but if her levels were low "enough" we'd be able to bring her home with us.  Needless to say we were praying and risking to hope for the second of those outcomes.

So with bated breath, we watched the clock until 6:00 PM on Thursday, November 29 when the nurse finally came in and gave us the verdict... GV could go home!!  Her bilirubin levels were still elevated higher than they ought to be, but not so high that at two days old she'd be in any risk by going home.

Thank God.