Thanksgiving and Giving Thanks

Having a child in the hospital is full of ups and downs, long-awaited triumphs and dismal disappointments.  On one hand, a successful plication surgery and subsequent reinflation of a lung that has struggled for weeks to heal.  On the other, a chylous effusion followed by a repeat lung collapse.  Up then down.  Up then down.  I won't lie.  Staying even somewhat positive is a constant challenge.

This past week, one of Josephine's hallmates died.  It was a little girl, I think.  And maybe a transplant patient.  We saw her family in the "consultation" room (the same one they took us to after Josephine's first surgery when she began hemorrhaging.)  Not a fun place to be.  Now, as awful as it feels, I'm grateful... because it could have been us.  It could have been our child whisked away to emergency surgery. It could have been our family members crying outside the consultation room.  It could have been us making funeral arrangements in the hallway outside the ICU.  But thankfully, it wasn't.  There's a duality to the situation that is fundamentally mind-numbing.  Simultaneously horrible and wonderful.  Nothing to do but keep moving and keep praying.  And so we do.

Although today is Thanksgiving and being in the hospital isn't exactly how we had originally planned to celebrate the day, we have much for which to be thankful:

A successful plication surgery.

A successful extubation.

Two working lungs and a plan to come off of ventilatory support.

The removal of all chest tubes, IVs, cardiac lines and pacing wires.

A few beautiful smiles.

Daily opportunities for holding and cuddling.

And six (SIX!) amazing months with our sweet Princess.

We're grateful.  To know her and love her, and to be called to comfort her, care for her and help her thrive.

Turkey dinner?  Who needs it.

Like a G6

My oh my, how time does fly!  The last two weeks have held lots of ups and downs for our sweet girl.  A partially paralyzed diaphragm, alternating episodes of lung collapse and pneumonia have all been part of our very recent past.  And that brings us to where we are now: extubated and breathing comfortably with the support of Vapotherm ("non-invasive" oxygen flow delivered through a nasal canula).  Since Josephine's right diaphragm isn't working properly due to a damaged phrenic nerve, progress is painfully slow.  Each day her ventilatory support level is stepped down, and so far she has handled things well.  If she manages to adapt to the decreased settings through this evening and tomorrow, there's a chance they may decide plication surgery to "tack down" her diaphragm won't be necessary, and (best of all) they may remove her cardiac lines.  Once those are gone, we'll (finally!) be able to hold her again.  Two and a half weeks without being able to hold and comfort her is waaayyyy too long!

Over the past couple days, Josephine has had decent periods of wakefulness during which she has taken to swatting at her butterfly mobile.  Just last night (the first night that Michael and I had been home since starting this leg of Josephine's surgical adventures), Josephine smiled.  We were a bit jealous that Grandma--who had generously volunteered to spend the night at the hospital in our place--got the first smiles since surgery, but we're super excited that Josephine is emerging from under the sedation and her sweet personality is still intact.  She has spent much of the day today playing and smiling and looking happy.  For us, it just doesn't get much better than that.

If all goes well, Tuesday could be cardiac line removal day.  From there it will be a matter of weaning down the ventilatory support to a minimal level.  No telling what could happen in the next week, but we're hopeful that we may be home by Thanksgiving.  What a wonderful cause for thanks!

The Glenn

The Glenn is the second in a series of three surgical procedures to mitigate the effects of hypoplastic right heart syndrome.  In the most basic of terms, it involves ligating the BT shunt (which was placed during the first procedure), then connecting the superior vena cava to the right pulmonary artery.  This allows blood to passively flow (by gravity) from the head and upper limbs into the pulmonary artery where it drains to the lungs for oxygenation.  Once oxygenated, the blood is returned to the heart through the pulmonary vein where it flows through the left atrium and ventricle and is pumped through the aorta to the rest of the body.  In Josephine's case, the operation also involved closing off the two large collaterals she had developed to insure that there would not be competing blood flow.  The period between the Norwood (1st procedure) and the Glenn (2nd procedure) is considered the time of highest risk for an HRHS baby.  Up to 1/3 of kids develop complications and die during "interstage".  Making it to the Glenn is a huge accomplishment.  Life after the Glenn, we were told, is considerably more stable.  Like night and day.  I wish this were true for us so far.

According to the surgeon, Josephine did very well during her surgery on Thursday morning.  We arrived at the hospital at 5:30 a.m., were checked in by 6:30 and off to surgery by 7:30.  At around 11:30, Michael and I were called to one of the consult rooms where Dr. Forbess soon arrived to let us know Josephine's status.  Josephine was taken from the OR directly back to her room in the ICU where the nursing staff got everything situated.  X-rays and ultrasound tests confirmed her lungs and heart were looking and functioning well.  She was intubated and had two cardiac lines, one set of pacemaker wires, a foley catheter, three IVs (placed in both hands and her right foot), and an internal jugular line in her neck.

As it was explained to us, extubation generally occurs very quickly after the Glenn.  This is due to the fact that the ventilator causes increased pressure in the lungs which makes it difficult for the Glenn circuit to operate fully.  (Too much pressure means the blood cannot flow as easily from the head and upper limbs to the lungs...which means there is less oyygen making it into the blood circulating to the body.  The overall result can be decreased oxygen saturation levels.)  Most kids are extubated within the first day, and many are released to "the floor" by the second or third day post-op.  By the end of the day on Thursday, Josephine had been extubated and was doing well, save a few areas of decreased function in her lungs.  Michael and I were thrilled that things - for once it seemed - were going according to plan.

Overnight Thursday to Friday morning, Josephine worked harder and harder to breathe.  Her tiny chest rose and fell rapidly, and tugged at her tummy and diaphragm which heaved in and out with every breath.  A look at her x-ray and labs revealed increasing areas of collapse in her lungs.  Talk of re-intubation began early in the day.  After attempting to provide support via a small nasal cannula and a larger RAM cannula, the decision was made to put Josephine on CPAP.  (In case you've never seen it, CPAP looks a bit like some sort of medieval torture device.  Air is delivered through a small mask which seals around the nose...not too bad.  But in order to keep it correctly positioned, a series of velcro straps must be positioned around and across the head, with another extending under the chin to keep the mouth closed.  CPAP looks like the ugly second cousin of old fashioned orthodontic headgear.  And Josephine hated it with a passion.)  While we weren't terribly happy about the discomfort CPAP seemed to be causing, we were happy to have averted reintubation.  By the end of the day, things were turning the corner.  Josephine's lungs were starting to reinflate and her blood gas numbers improved.

On Saturday morning, Michael left the hospital at 6:20 a.m. to meet a delivery person at the house.  Several weeks ago during a particularly brief but violent thunderstorm, a power surge caused the electrical striker on our gas stove to short out.  Rather than pay half the cost of a new unit to repair the 20+ year old model that came with the house, we opted to purchase a new stovetop.  We had hoped to have it delivered and installed before Josephine's surgery, but that didn't quite happen.  Josephine and I (along with our cadre of medical staff members) started the morning optimistically.  Although she was sleeping much of the time, I read her a couple stories and attempted my version of music time (which amounted to me singing along to music sputtering in on the hospital's much-too-slow internet connection.)  Aside from the occasional squirming fit (which I assumed was brought on by discomfort in some capacity), Josephine was doing well.  Her saturation levels were running in the high 80s and low 90s.  She seemed to be breathing almost effortlessly, at a moderate pace with no abdominal pulling. Everything was good.

Around 9:00 Josephine and I received Michael's text that he was driving back to the hospital.  "All's good" I texted back, noting that the nurse and I had discovered a small amount of blistering and skin breakdown behind Josephine's ear.  (Unfortunately, she has her momma's sensitive skin.)  A short while later, Josephine woke up.  It was clear to me that she was very uncomfortable.  In addition to her normal squirming, she was arching her back and jolting her head back and forth.  With each wiggle, she inched her CPAP mask further and further off of her nose, eventually moving it all the way to the side where it pressed into her face, hissing uselessly.  I quickly repositioned the mask and continued to pat her back gently, hoping that she would settle and drift back to sleep.  The absolute last thing I wanted was for her to be awake and in pain or scared.  Although I desperately wanted to see her open her eyes and smile at me for the first time since surgery, sleep - painless and stress-free - seemed like a much better option in this situation.  When she didn't respond to the normal repertoire of mommy-interventions (patting, shushing, sleepy sheep ocean sounds, placing her paci within distance), it occurred to me that she had not had any pain medication or anything for anxiety in several hours.  I stepped out into the hallway and signaled the nurse, who had just stepped away for a moment to grab some breakfast.  By the time the nurse arrived at Josephine's room 30 seconds later, Josephine's oxygen saturation levels had started to drop.  All morning, she had been hanging out in the high 80s oxygen-wise.  And now, she was at 75 and falling.  The nurse called for a respiratory therapist, who happened to be close by.  The respiratory therapist quickly pulled the ventilator flow tube attached to the mask and began to ventilate using the hand ventilation bag. Woosh...wooosh...woosh.  Josephine was getting more and more agitated.  Woosh..woosh...woosh.  At that point, the respiratory therapist decided to suction Josephine's mouth to see if there were secretions making airflow more difficult.  She stuck the suction tube into Josephine's mouth and I could hear what sounded like small amounts of saliva being pulled into the vacuum tube.  Josephine looked horrified.  Her eyes had snapped open and her face was slowly but steadily turning from a deep red color to purple.  "Get me the deep suction tube," the respiratory therapist called calmly, but firmly.  The energy level in the room began to rise.  Grabbing another plastic-wrapped package out of the in-room supply drawers, the nurse opened the window to the adjoining room and said, "Get Dr. Moreland, please."  Several nurses and an additional RT had entered the room and were moving around with purpose.  Dr. Moreland then rushed in and began barking orders.  By this time, Josephine's saturation level had dropped below 50.  As they worked trying to re-establish her airway, I watched helplessly as she flailed around, oxygen saturation level finally landing at 19 as they pushed a paralytic through her IV and placed a new endotracheal tube.  What had been our largest success in the past 36 hours had now entirely been undone in a matter of mere minutes.  Josephine had been reintubated and was no longer breathing on her own.  I could do little more than stand in the corner shaking and crying.

Over the past 24 hours, Josephine has been struggling a little with varying levels of lung collapse.  As happened during our first stay, they are able to reinflate one side seemingly only at the expense of the other.  They've sent off cultures of the secretions pulled from her mouth and throat, and so far the results have not indicated infection is present.  Early this morning a nasal swab was taken to determine if she may have a viral lung infection.  So far, nothing.

At this point - although intubated - she seems to be resting somewhat comfortably.  Her oxygen saturation levels are in the low 90s, which is fantastic.  The plan for today is to continue respiratory therapy in an attempt to get both lungs to reinflate.  They expect that may happen by tomorrow.  Best case scenario, the doctor says, is that if everything looks perfect we may be able to extubate by Tuesday or Wednesday.  I realize it's only a matter of days, but it feels like a lifetime.

Figuratively Speaking

The morning of Josephine's cath exam was one filled with activity.  Josephine wasn't allowed to have formula after midnight and while we were permitted to give her Pedialyte (which surprisingly, she loved), even that had to be cut off by 4:30 a.m.  Despite being what I would imagine was ravenously hungry, Josephine was in fairly good spirits.  We dressed her in her oh-so-stylish bright pink Dancing Queen onesie paired with her 80s throwback leg warmers adorned with pink prancing ponies, and after a quick run to Starbucks for some morning "fuel", headed to the hospital.


The check-in process was mostly painless.  We spent a few minutes in the Inpatient Admitting waiting area, giggling as Josephine marveled at the ceiling tiles and overhead lights.  (This kid is fascinated by the most mundane things.  :) )  After a short time, we were called to the desk where we signed a pile of releases and were freed to go upstairs.

The unit was just as we had remembered.  Same reception desk (minus the desk nazi who guarded the entrance to the CVICU,) Same twinkle lights illuminating the waiting room.  Same worn, but moderately comfy recliners.  Same stillness punctuated every so often by a passing staff member.  We had spent far too long here during Josephine's first stay, and it began to dawn on us that our second stay was edging closer by the day.

While we were waiting for the cath team to prepare, one of Josephine's favorite nurses happened to walk by.  From the darkness of the waiting area, I waved to her.  At first I don't believe she fully recognized us...man, woman, baby...wait a second, that's Josephine!  "No freakin' way!"  she exclaimed as she pulled open the waiting room doors and bounded over to see our much bigger, much healthier-looking little girl.  After a couple quick hugs and some reveling about how much Josephine had grown since going home, nurse Kim excused herself so she could get back to her duties.


A few minutes later, a member of the cath team came out to escort us back to the cath lab, which was deep within the maze of hallways behind the ICU.  Perhaps I was in a bit of denial about how this would all go.  After all, it seemed to me that a cath wasn't surgery exactly.  Just a procedure.  Take a little blood. Snap a few pictures.  And we're out.  The paperwork, however, made it pretty clear this was a serious medical procedure that came with a very specific set of risks.  Michael and I signed each consent, then met briefly with the anesthesiologist and cath doctor - Dr. Nugent, one of our favorites from Josephine's first stay.  We cuddled and kissed our sweet girl, then passed her off to the nurse to be taken back to the OR.

Back to the waiting room we went.  While I'd like to say I was able to get a few minutes rest, that simply wasn't meant to be.  After about an hour, we were advised that Josephine had been put to sleep and was doing well.  Dr. Nugent was just about to begin.  as we waited, other parents with other kids came and went.  A dad snoozed quietly in the corner recliner.  A mom nearby watched Let's Make a Deal.  We sat, glancing occasionally at the T.V., surfing the internet or catching up on Facebook posts we'd missed over the past several days.  Finally, Dr. Nugent appeared at the doors to the waiting room.  "Let's go to the consult room," he said, quickly reversing his suggestion when he noticed that the entire room, save Michael and I, had cleared.  I had confidence in Dr. Nugent...I trusted him.  But in the back of my mind I harbored some fear about what he was about to tell us.  "Well," he began, "I don't want to call it unique or bizarre...but it's bizarre."  (Words, I can assure you, are not necessarily the ones you want to hear your child's doctor use to describe her condition.)  He then pulled out pictures taken during the procedure which showed that Josephine's shunt had visibly narrowed on one end.  (We had learned during Josephine's first stay that full occlusion of the shunt was considered a catastrophic event.  Game over.)  Yet Josephine was fine. Her stats had been in the 80s.  Her color was a soft pink.  Her pulses were strong.  She was bright and alert and gaining weight.  We were even well on our way to removing the feeding tube.

As it turns out, Josephine's body had spontaneously developed two
collateral vessels leading off of her heart.  During the first surgery, the doctors had implanted an artificial shunt to keep blood flowing to her lungs for oxygenation.  Somehow, in the weeks since leaving the hospital, her body had managed to grow two more shunt-like structures.  Dr. Nugent punctuated the gravity of the situation by finally commenting, "Without these two collaterals, she would have been as blue as a squid a month ago."

*   *   *

Josephine has been very stable, very safe and very active over the past two weeks.  We're also pleased to say that she is now ng tube-free!  Dr. Ikemba, her cardiologist, gave us the O.K. to attempt exclusive bottle-feeding the next time she pulled out her tube.  True to form, Josephine had that task tackled in about a week's time.

Tomorrow, we're scheduled to take Josephine in for her second surgery, known as the Glenn.  Essentially, this will be the true game changer during which they remove the shunt and reroute her existing plumbing so that blood from her upper body passively flows down to her lungs where it will be oxygenated and sent back to the heart and pumped to her body by her one good ventricle.  Although it is still major open heart surgery, they tell us recovery time is typically significantly shorter than that of the first procedure.  We're hoping an praying that's true.

Josephine and Panda: A Love Story

Josephine loves diaper changes.  She loves feeling the velvety-soft changing pad cover under her fingertips.  She loves the warmth of the wipee, fresh out of the wipee warmer.  She loves the strangely piney scent of her diaper rash cream.  But what this silly girl really loves is the view from the changing table.

Weeks ago, Michael and I decided to spice up the scenery around Josephine's changing area.  Like most spaces where function trumps fashion, it was a bit bleak: a wall...a framed picture...and a clock. This would never do for our adorable little girl.  We needed color!  We needed texture!  We needed full-on fung shui!  To accomplish the task, we opted to hang a few of Josephine's most loyal friends - Panda, Sunny and Mr. Fox - from the bottom of the clock.  Sunny (a boldly-colored sun-shaped teether rattle) quickly abandoned his spot after being called up to duty in the playpen.  During one of Josephine's test-runs in the improved changing area, Mr. Fox decided to jump off the clock and drop square in the middle of Josephine's face.  Josephine wasn't amused.  Mr. Fox was immediately and irrevocably voted off the clock. That left Panda. Sweet, friendly Panda.

We were delighted to see that Josephine had taken to Panda's new role as her diaper change buddy.  Every time she was placed on the table, her eyes would drift back, searching for something of interest to look at. Wall?  Eh.  Picture?  Eh.  Oh, what's that?  PANDA!! The moment she spied Panda it was as if all else faded away.  Her eyes would squint up in utter glee and the most beautiful toothless grin would spread across her lips.  Josephine simply adored that little bear.

After several days of soaking in the cuteness of Josephine grinning at Panda each time she had a diaper change, something strange and unpredictable happened.  Following an afternoon of playing downstairs, I took Josephine up to the nursery to change her diaper before dinner.  As soon as I walked into the room, I noticed...something was missing.  "Josephine, where's Panda?", I asked trying not to sound too panicked. (Babies - particularly diva babies like Josephine - can smell fear.  And when things are moved from where they're expected to be, it's perfectly reasonable to anticipate a complete and total meltdown.)  I carried her over to the changing table and laid her down, disappointed that I wouldn't get to see  her sweet Panda smile during this diaper change, and hoping I could keep her entertained long enough to get the job done without too much of a fit.  As had become her custom, Josephine craned her head back and scanned the space behind her.  "Oh, no"  I thought, waiting for the inevitable whimper and probable wail when she discovered her friend had vanished.  Her eyes locked on Panda's normal position.  Then, without skipping so much as a beat, a gorgeous grin spread across her face, and she began kicking her legs happily.

Turns out, Josephine was smiling...at the clock!  Since her great-grandpa was Abilene's original "clock doc", Michael and I find her newly-discovered love of clocks pretty darn endearing...and wildly appropriate.  Who knew that sort of thing was in the genes? :)

*  *  *

Several weeks of great growth behind us. Tomorrow we'll be taking Josephine in for her cardiac catheterization procedure in preparation for her second surgery in two weeks.  The cath procedure will begin at 6:00 a.m. and should take 2 - 3 hours.  If all goes well, we'll be in recovery by lunch and home (fingers crossed) in time for a late dinner.  Then, it'll be just two short weeks until the hospital once again becomes our temporary home.  It's amazing how time flies...

First Things First

On August 14th, Josephine, Michael and I very joyfully but very quietly left Children's Medical Center for the very first time. (And I say "quietly" because we did all we could do to keep our impending departure a secret from Josephine...seems she always has plans of her own in mind, and generally enforces her will in very dramatic fashion.)  The past few weeks at home have been busy to say the least, but in just that short amount of time Josephine has had a number of notable firsts:

1.) First ride in the car seat (and first experience with motion sickness) - Luckily, she waited until we walked into the house before she decided to baptize her car seat with her lunch.

2.) First experience in her bunny swing - While in the hospital we could tell Josephine really enjoyed the back and forth motion of the glider chair.  We don't have a glider, but the bunny swing seems to get the job done quite nicely.

3.)  First field trip in the stroller - I'll admit, we may not have selected the best day - it was well into the 90s temperature-wise - but once we got going, Josephine breathed in the fresh air, took a look at the beautiful blue sky and promptly fell right to sleep.  This girl really likes to be moving...I'll blame that on the extended time held up in her bed at the hospital.

4.)  First nap in her crib - We've discovered - not that it's any surprise - that Josephine REALLY enjoys being held.  For the first few days at home, we were able to put her down only a handful of times...and that action was generally met with some very persistent and angry crying.  We were thrilled when we were finally able to get her down for a small nap on the nesting pillow in her crib.  She has since mastered the art of napping in the pack-and-play in our living room. 

5.) First bath in the baby bathtub - The entire time Josephine was in the hospital, we were only able to give sponge baths (if any baths were allowed at all.)  Josephine was NOT a fan...which probably
had something to do with being cold and wet at the same time.  After working up some courage (and realizing that we couldn't sponge bathe her forever), I dragged out the ultra-swanky vibrating baby bathtub.  Turns out Josephine really likes baths. (Although, admittedly, she looks rather perturbed in the photo.  It was taken within her first few seconds in the tub and I think she was a little angry something wet was touching her butt.  Once she got a whiff of the lavender scented baby bath she settled in quite nicely.) :)

6.) First double-digit weigh-in - When you consider the number of times we were held in limbo at the hospital due to Josephine's inability to consistently gain weight, her progress over the past three weeks is notable.  In just that short amount of time, she has gone from right around 9 pounds to over 11...and still climbing!  I won't say she's the best eater (this has been one of our big struggles thus far), but she IS gaining, and we and the doctors couldn't be happier about it.

7.) First over-the-head outfit and cloth diaper experience - Home is simply full of novel experiences for Miss Josephine!  The cloth diapers are around on somewhat of a trial basis, however, so far have fully prevented blow-outs and leaks.  (Not something I really anticipated being so excited about. :p)  And since she was only able to wear button-up outfits in the hospital (to insure easy access to her chest for the daily parade of doctors and nurses), we're having fun branching out beyond rompers and sleep-n-play outfits.

8.)  First restful night's sleep - Michael and I likely won't be able to really get a good night's sleep until after the ng tube disappears (round-the-clock feedings are no fun!)...but Josephine recently managed to sleep straight through from about 9:00 p.m. to 5:00 a.m.  She's only done it once so far, but it's amazing how much more rested we all felt the next day.  We're going to work on making that event the rule rather than the exception.

9.) First conscious smile - Josephine has been cracking smiles for weeks now...but the majority have been while sleeping or as the result of what I'm guessing is intestinal activity.  Yet she has managed to reveal her sweet smiley self consciously on a few occasions.  So far, bath time seems to be the most consistent smile-watching
opportunity.  We'll list smiling under the same category as restful sleep...an experience we'd definitely like to make more of a rule.

Josephine is still struggling a bit with reflux and we're hoping one
day soon she'll realize that nighttime is for sleeping (and not for strolling "the track" - what we've named the path around the lower story of the house that Josephine insists we walk at 2:00 a.m. for her amusement.)  That said, we're definitely glad to be out of the hospital and at home with our sweet Princess Pea. :)

The next surgery has been tentatively scheduled for October 30th.  Until then, appointments galore...and of course, lots of love, kisses and cuddles for our darling girl.

 

There's No Place Like Home

I've donned my ruby slippers for weeks now, clicking them together frantically at every opportunity...so why aren't we home yet?

Just over a week ago, Josephine transferred out of the IMU to the cardiac unit on level 8 (known around the CICU as "the floor").  Since Michael and I have been working on the parent education requirements for quite some time, we thought our stay on the floor would be brief, really more of an exercise in patience than anything else.  

As we were told in the IMU, life on the floor is very different.  There are fewer nurses, so the expectation is that parents will pick up the slack and provide the majority of the care for their children.   This was no problem.  We'd been changing diapers, bathing, administering medications and changing out feeding pump bags for weeks.  What was incredibly different was the number of doctors, nurses and miscellaneous bodies that paraded through the room each day.  Nurse shift change report.  Then medical rounds.  Then another set of medical rounds.  Then morning meds and feeds.  And on and on from 7:00 a.m. until at least 5:30 in the evening, after which things quieted down somewhat.  (Quiet being a relative term...there was an angry little baby down the hall - who we nicknamed "the ringleader" - who began screaming at precisely 6:30 each night.  In short measure, he managed to get almost all of the other babies on the floor screaming in frenzied unison.  We're proud to say Josephine selected her own screaming schedule very carefully, always screaming to the beat of her own drummer.  Our little girl is no follower. :) )  Michael and I began the 48 hour room-in on Monday and were told that if everything went well, we'd be on our way home today.

Needless to say, the room-in went well for Michael and I.  We were able to independently complete all of the tasks necessary for Josephine's care at home, including dropping a new ng tube (in case she accidentally pulled hers out...which she did three times over the course of our two day test.)  We managed medications and feeds flawlessly.  And by the time medical rounds made it to Josephine's room early this morning, we were declared good to go.  We needed only to pick up Josephine's medications from the pharmacy, take her down to the clinic for a weigh-in and review discharge papers.  We were ecstatic.

About 15 minutes later, everything came crashing in...

A bit of vomit and some bloody stool effectively canceled our departure and landed Josephine back in the CICU.  After a full 48 hours of freedom from all wires, tubes and hoses (with the exception of her ng tube), Josephine has now regained an IV, all of her monitoring wires and a new stomach suction device.  While most of the tests have been inconclusive or outright negative, the doctors are monitoring carefully for a condition called NEC - necrotizing enterocolitis. Best case scenario, we'll be here roughly another week sorting out her symptoms.  Worst case scenario could mean another surgery and potentially not leaving the hospital at all until after Josephine's second  heart surgery, which isn't supposed to take place until she's 4 - 6 months old. To say I'm disappointed is a massive understatement.

With all the drama, you'd think Josephine would look like a really sick baby.  But she's holding up well.  Her stats are all great, she has no markers for infection or inflammation and still manages to make some of the funniest faces in spite of the tape and tubes adhered to her face.  She's really looking forward to going home...and we're hoping we can make that happen soon. 

She Calls This Pose "Blue Steel"

 It's hard to believe we've been in IMU just over a week now. In addition to making major progress in her breathing, gaining a respectable amount of weight and managing to fight off any further infections, Josephine has been working on her model poses.  (Notice that she favors the sassy, Olan Mills, hand-below-the-chin look, which she has been perfecting since her sonogram days.) 

Besides spending a great deal of quality time snuggled up relaxing with either Mommy or Daddy, Josephine has continued with various therapies aimed at helping her recover the developmental time lost while she was intubated and unable to move.  Despite the fact that she has slept through every last session of her speech therapy (which isn't aimed at helping her speak, but rather at assisting her in mastering the ability to swallow effectively in spite of some ongoing vocal chord paralysis), she amazed the speech therapist today by taking a bottle and successfully drinking a little under an ounce of milk.  (She would have taken more, but the speech therapist wanted to wait and make sure she's not accidentally aspirating what she swallows.)  The long and short of it is that Josephine is a total champ when it comes to eating!  (Like mother, like daughter I suppose. :)  )

We're now waiting to get the go-ahead for Josephine to move to "the floor".  (It was pointed out to me that when taken literally, "the floor" seems awfully cruel.  In our situation, it refers to the 8th floor of the hospital where kids go just before they are sent home.)  Michael and I have been completing our education requirements - learning to give medications, place a feeding tube, work a feeding pump and administer CPR - so once we make it to the floor, we should only need to complete the room-in process before Josephine is discharged.  Rumor has it we may be moving upstairs within the next week and may be able to do our room-in a by next weekend.  We're getting so close!