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Friday
Jul132012

What a Difference a Year Makes

Partners in crime heading to an ice cream social

Note to anyone who is still with us:  This is my first blog post over a year.  It’s hard to say why neither of us has written since last spring.  Perhaps it was lethargy.  Perhaps Claudia and I had a lot of catching up to do at home after spending so much time in Seattle last year.  We definitely had a lot to learn about parenting, especially without the safety net of our care givers at Swedish.  Probably in large, it was a subconscious effort to put most of what happened in 2011 behind us.  Whatever the reason, I am begging forgiveness for the delay.

Dan
9 July 2012

Memorial Day 2012

Blessedly, the girls allowed me to sleep in this Sunday morning.  But at 9 o’clock the bedroom door swings open and a cooing, pajama clad bundle of baby girl is laid upon my chest.  Through squinted eyes Olivia’s features slowly appear as little hands examine my face.  At this stage, she still needs to feel or taste shapes and textures as much as see them.  Inquisitively, her beautiful blue eyes and tiny hands explore my features up close.  Probably because she is a baby and doesn’t have a clue about morning breath, nappy hair, and scruffy faces, she’s intensely all up in my grill.  I worry about creating a bad impression, and hope that my 55 year old mug doesn’t permanently scar her psyche.  Oblivious to all, she lingers, and I’m reminded of the first encounter between rain forest explorers and members of a lost tribe, the Poopoopees.

A smirking Claudia sprawls on the bed next to us, and for a while we make our little girl the meat in an Olivia sandwich.  She takes turns climbing over each of her parents, depending on who looks most interesting at the moment, occasionally pausing in the gap between, as if she can’t make up her mind.  We take turns “getting her mutton”, and all three of us are now laughing and wrestling among six pillows and a big down comforter.  Almost dreamlike, the fact that I am experiencing one of the most satisfying brief moments of my life, does not escape me.

It’s the last weekend of May, 2012, and a year since Claudia and I updated Olivia’s blog.  Predictably and metaphorically, our lives are as radically different now as is today’s anticipated high temperature for the two cities, Atlanta - 86, and Seattle - 62.  Olivia still has almost a weekly doctor’s appointment or some sort of therapy, but for the most part, she is a normal well-adjusted baby girl of either 11 or 15 months old, depending on your point of reference.

Her happy and peaceful demeanor belie the fact that she spent exactly one hundred forty five days in the NICU/ISCU units of Seattle’s Swedish Hospital, most of that time with breathing and feeding tubes in her nose and throat, needles in her feet and hands, and sensors stuck to her body, while she lived under Plexiglas in an incubator called an Isolet.   At one point about mid-way through her stay, I counted 13 different wires and tubes connected to her little figure, all of it vital to her survival.

Now having kicked the feeding tube, her most troublesome attachment is a disposable diaper.

For a long time she didn’t make a sound, even when in obvious pain or discomfort.  Her mouth would open, but only a raspy micro wheeze would emerge, her throat so traumatized by tubes.   Her mother and I worried that she might not ever find her voice.

Today she laughs, cries, and spends most of the day attempting to converse with us in a language only she understands.   What sound like to me “dada” comes out fairly often, but before I get too cocky she follows it up with “da-da-da-da, da-da-da-da”, or something akin to a song that you all know by the Police.  A neck nibble or just the threat of one will usually summon an impish laugh or a screech.  Those are sweet sounds, especially from this little being who almost didn’t survive the first night of her life.

Claudia at care time in the early days

When she was born, Olivia weighed 1.7 lbs.  Yesterday the LCD display of her digital scales announced that she had bested the 18 lb. mark.  Way to go Olivia!  Unfortunately, I think that dad has had a similar increase in weight.  If there is such a thing as “freshman forty”, there certainly is a “fatherly fifteen”.  You dads know what I’m talking about.

Therefore, on Saturday mornings Olivia and I grab the B.O.B stroller, and head down to what we call “the river”, a park which straddles the Chattahoochee River on the north side of Atlanta.   This a popular spot where locals can quickly escape the concrete, metal, and glass of the city to walk, run, cycle, or just take in nature.  There is a wide dirt path next to the “Hooch” that we run along, the round trip being about the length of a 5K, or 3.1 miles.  In route I try to point out things like “trees” or “doggies”.  Although I don’t go out of my way to intrude on other park patrons, Olivia’s infectious smile and social nature easily engages strangers.  Her positive energy raises everyone’s spirit, even her old man, while he struggles to shed the “new daddy weight”.

But hey, I’m getting ahead of myself.

First look the Chattahoochee river

How We Escaped Seattle

On Monday June 6th, 2011, the 67th anniversary of the D-Day Invasion, I boarded a Delta flight for my last trip to Seattle and a mission to bring mother and daughter home.  My face wasn’t painted with camouflage stick, I didn’t have a rifle, hand grenades, and a bunch of other gear strapped to me.  Eisenhower wasn’t there to see me off with his “…embark upon the Great Crusade” speech as he did our troops in 1944.  And to be sure, first class on Delta is quite a bit more comfortable than squeezing onto a web bench, parachute container against the wall, wedged between similarly equipped soldiers in a drafty C-47 transport, engines roaring as it claws the night air trying to gain altitude while overloaded with men, equipment, and fuel.

 Pep talk 5 Juy 1944

OK, the metaphor is laughable, and to compare oneself with those of the greatest generation is borderline sacrilege.  Still, I was filled with no small amount of apprehension as the Delta 767 lifted off.  Ahead lay the task of accepting the responsibility of our preemie daughter’s care.  If everything went well, in a few days Claudia and I would be walking down the corridors of Swedish Hospital, me with a baby car seat and Claudia with the obligatory “Swedish Babies” discharge bag.  Claudia at 39, me at 54, were about to become what we had seen countless times in the past months, first time parents  of a newborn walking out of the shelter of the hospital and on our own, so to speak.

Claudia had given me the call the night before, that on Tuesday they were planning moving Olivia to the rooms in the ISCU (Infant Special Care Unit) in which parents are responsible for most of the care and more importantly, Olivia would be removed from monitoring.   Sure, the nurse’s station would be right outside the door, but seeing Olivia completely untethered for the first time in her life would be a very special moment.

Breathing on her own

There was also the logistics of moving the girls home after five and a half months in Seattle.  When Claudia checked into the Silver Cloud hotel, a few blocks from the hospital, she had her luggage and a cart worth of flowers and a few care packages from home.  Due to an unimaginable outpouring of support by friends and family, the care packages had kept coming.  There was food, books, clothing, more flowers, nursing equipment, Claudia’s laptop, iPad, a couple of cameras, and now baby supplies.  In the hotel kitchen’s deep freezer a last box of frozen breast milk that the Silver Cloud staff had so graciously stored for us needed to be boxed in dry ice and… there might have been a few more items hanging in the closet after a couple of trips uptown to the Nordstrom Rack.

The point is that by June, Claudia had pretty much filled a hotel room to the roof, and guess who’s task it would be to get it all home?

Boots on the Ground

Once I arrived in Seattle and made my way downtown via Seattle’s Light Rail system, I grabbed a small Volvo sedan from ZipCar, and headed to the nearest UPS store for boxes.  Armed with those and some more contributed by the hotel staff, the packing could commence.  Heidi, another preemie mom from Vashon Island whom Claudia had befriended in the NICU, stopped by the room to add some much needed reinforcement.  While I was out running another errand, the girls got everything but what we would carry on the plane boxed up.  Returning to the hotel, I packed the little Volvo and made one more trip back to UPS to see what Brown could do for us.

 

 Last Days in the ISCU

At Swedish, when a preemie is well enough to leave the NICU but not go home, they are moved downstairs to an Intermediate Special Care Unit (ISCU).  Here they get most of the same medical care as in the NICU, but while on supplemental oxygen, are transitioned out of the Isolets, and then eventually on to breathing room air.  Their vitals continue to be monitored up to the last few days before discharge.  I can tell you that having focused on Olivia's vitals monitor for 5 months, it is somewhat disconcerting when they finally take it away.  Not hanging on every breath is almost impossible.  It reminded me of when during my pilot training, my flight instructor got out of the airplane one day, and told me that he wanted to see three takeoff and landings to a full stop – solo.  He somehow knew that I was ready and I wanted to believe him, but that taxi back to the runway for takeoff was the longest two minutes of my life.

The other big change is that were the care time is voluntary in the NICU/ISCU, the infant personal care is progressively more given over to the parents.  Not that Claudia missed many of the 6 daily diaper changes, feedings, and taking of temperature over five months, but in the rare event that she was too exhausted to walk to Swedish for the last care time, a NICU nurse would handle everything, no questions asked.  Now we were the whole production, but as you can imagine neither of us complained.

Over the 5 months that Olivia spent in the NICU, we were fortunate enough to meet some pretty amazing parents, more or less in the same boat as us, providing care for their preemies.  Sadly and for whatever reason, there were also a few critical infants whose parents never made care time.  Although the NICU/ISCU was definitely the most nurturing place they could be, it was hard to imagine this king of abandonment.  Confidentiality precluded us from learning their stories, so we said a prayer and hoped for the best.

One of the items on the pre-departure check list is a session to see how Olivia would handle an infant car seat.  Our nurse placed the car seat that we provided into her hospital bed, and then observed if mommy and daddy actually had been paying attention in class while we strapped our little girl in for the first time.  Then there was a thirty minute comfort check.  My memory is that Olivia slept through most of the ordeal, so perhaps it was in fact a parental check.

Car seat: no problem

Finally the day came.  The discharge interviews and paperwork seemed to go on forever, but by early afternoon, we were finally deemed indoctrinated, signed, sealed, and fit enough to walk out of the hospital with our baby girl.


On the wall behind the desk at the main nurses stand in the ISCU is a white board listing infant patients and their assigned nurses for the current shift.  A lovely lady named Shannon, who was the manager on duty, asked Claudia if she wanted to do the honors in erasing Olivia’s name from the board.  Another tearful moment ensued.

Goodbye hugs from Nurse Marcie followed and Claudia paused to leave a goodbye message on the nurse’s board in the room.

At the main entrance as we briefly waited for the hotel van, Chaplin David and Shannon emerged for final hugs and well wishes. Tearfully thankful for the amazing care that we had received, we took one last look at Swedish, and told the van driver Peter that we were ready to start the first leg of our journey home.

Chaplin David and Shannon from the ISCUWhen we returned to the Silver Cloud, the staff had a Pack n Play crib waiting in the room.  Only one and a wake-up left for the three of us now.  When I lay Olivia down in the bottom of the crib, she looked so small and detached.  Thankfully, she seemed content and slept pretty much through the night, Claudia and I waking her for feeding and comfort care on the same schedule as the ISCU, every four hours.

In the weeks prior Claudia and I had spent a great deal of effort planning and reviewing our trip home.  We stressed about flying, mostly for the exposure of Olivia’s premature immune system to the public that would be unavoidable in the airport, going through the security checkpoint, and on the airplane.  We considered renting a car and driving, renting a small plane (I have my pilot’s license), and or trying to get a hop on a corporate jet.  After discussing it with Olivia’s doctors, weighing the risks and costs, commercial travel was deemed the best choice.  We booked a red eye, with the thought that the airport security checkpoints and flights would be less crowded.

Unfortunately, this turned out not to be the case.  Although we brought a letter from Olivia’s neonatologist explaining our circumstances for the TSA, it did us little good.  Claudia, with Olivia in a sling carrier on her chest, still got a thorough inspection by the blue rubber glove crew.  I complimented them on their assiduousness as formula and ice packs were sniffed.  A necessary evil I suppose, but damn it was stressful.

We decided that I would board early, and wipe the seating area down thoroughly with Clorox sheets.  Claudia brought Olivia on just before the crew shut the door.  We snuggled into the last row in First Class on the right hand side of the Boeing 767’s cabin, Olivia on Claudia’s lap.  When the flight attendants dimmed the cabin lights for taxi and takeoff, Claudia and I shared a kiss over Olivia, our checks moist in the dark.  Claudia had been gone for six months.

My wife had been through so much stress over the last few weeks, I wanted her to try to sleep.  We transferred Olivia to my lap, I dialed up a movie, and ordered a bourbon on the rocks.  Olivia and Claudia slept.   A couple of hours later, Olivia showed impeccable timing waking just as the movie credits rolled.  She was hungry, so from a flight attendant  I requested a little hot water in a barf bag to heat a bottle.  Olivia proved a capable traveler going right back to sleep after her midnight snack and a fresh diaper.  The later I performed on my lap in the dark, thank you very much.  We flew on. 

At my age, it isn’t as easy to do an all-nighter.  But as the plane touched down at Hartsfield a few more hours later, sunshine infiltrating partially opened window shades, I felt renewed.  We were home at last.

Pulling in the driveway we were greeted by some semblance of normal child birth.

Wednesday
May042011

Weeks 37-39 (Part 2 of 2)

Part 2: Not so Peepless in SEAttle

Hi again - this is Claudia.  Happy very belated Easter.

My apologies for not getting back to y'all more promptly (I had to throw that in since it is a rare occasion when I hear a southern accent these days and grits are truly nowhere to be found in this town.) It has been a busy few weeks so please excuse this long entry in advance as I attempt to make up for lost time.

Seemed appropriate since friendship is the sweetness of life (but without the sugar crash).

Olivia enjoying a rest after an Easter game of crib touch football.

Olivia talks over her egg hunt strategy with pals bunny and flower

 A Sea of Change

At the moment, I am sitting in a Starbucks near Swedish Hospital by a window watching the rain outside.  I have heard that this was the coldest, windiest, and rainiest of Aprils on record for the city, and I have two blown out umbrellas to prove it.  Rather by choice or necessity, I have become acclimated to my surroundings and I am starting to blend in with the local natives. I carry a warm scarf and an umbrella with me at all times, I have become a regular in many area restaurants, and I can give tourists decent directions when asked.  The reality of the true extent of time I've been here fully sunk in when two monumental events occurred recently:

1) The season changed from Winter to Spring

2) Olivia passed her 100th day of life

Spring Cherry Blossoms over Swedish Hospital.

Olivia gets her first sniff of the outside world (before I found out nature is forbidden in Intensive Care).

Giligan's Island

Although I have often felt like a member of the shipwrecked crew from the S.S. Minnow, I have found that my extremely extended 3-hour 'cruise' has led to many new connections to the natives (local Seattlans) and traveling friends from afar.  My island has periodically been inhabited by many of these wonderful individuals whom have not only made my stay more bearable, but have also brightened my outlook and shown me that better times are on the horizon. 

Day Trippers

Several friends from Atlanta have breezed through town unexpectedly primarily on business trips.  They have been extremely thoughtful in reaching out to me and making time out of their hectic schedules to take me out to lunch or dinner.  Seeing them has lifted my spirits and given me a good reason to get out of my hospital-trekking fleece. 

The first was Holly, a wonderful colleague from Coke who was here for a conference. She came at a time when I really needed to see a familiar face and have a good time catching up over dinner and a glass of wine - something we had often done in Atlanta with other fun work colleagues. 

My sweet girlfriend Amy was also in town for an evening while on a trip to see her Seattle-based client.  I was thrilled to have Amy accompany to the hospital to see Olivia and to hear how she and our mutual friends at home were doing.  Luckily, Amy comes here periodically, so I am looking forward to seeing her again soon. 

Another surprise visit came from my former next door neighbor, Mark.  His lovely family lived by us the first five years we were in our current home before they moved to another area of Buckhead/Brookhaven.  It was a delight to catch up with him and hear the latest about his family. 

Additionally, a classmate of mine I've known since childhood, Janet, was in town from Chicago with her husband for a few days. Catching up with her is always a joy since I typically only see her in our hometown of Columbus, Ohio every five years for our high school reunions or in Atlanta on occasion when she is visiting family.

Enjoying reconnecting with Atlanta friend Samantha and childhood friend Janet

Natives (Friends of Friends)

A surprising group of natives have also enhanced my shipwrecked experience. Another longtime childhood classmate and friend, Blair, was extremely thoughtful in putting me in touch with her college roommate from Duke (Molly) and her cousin (Melanie). Both ladies are delightful Seattlans who made me feel very much at home. (Thank you, Blair!)

Andrea and Cameron, the wonderful couple Dan and I were staying with over New Years in Seattle, also introduced me to their friend Laura.  Laura's family went through their own experience at Swedish several years ago. With grace and honesty, Laura shared her story with me - helping me to realize that although our lives have forever been changed, Olivia will come home and go on to thrive in the years ahead. 

Additionally, my girlfriend Lee and her husband Hal went out of their way to ask the local NW GLACEAU team to periodically drop off vitaminwater, FUZE, and smartwater to me to keep me hydrated and make my stay more pleasant. All of these unexpected connections have made me feel welcome in this foreign land and much less like a castaway.

Life-savers

In addition to Lee's earlier visit, I am very grateful to have had several additional Atlanta girlfriends make the journey to spend a few days with me.  These fabulous women put their families, work, and personal obligations on hold to make the long flight to Seattle to meet Olivia and give us both a ton of love and support. 

In early April my girlfriend Samantha came for a few days inspiring me with her strength of spirit and depth of kindness.  Sam has had a crazy year that most people can't even imagine, and just when she finally got through it, her first instinct was to jump on a plane and come to my aid which both amazed and humbled me. 

Samantha visits with Olivia in the NICU

The wonderful wife of one of Dan's closest friends, Irene, also came to visit in April.  Irene is truly part of my family even without the DNA linkage to prove it.  She cuddled Olivia so sweetly and literally kept me in stitches all weekend - helping me not only find my sense of humor again but a few post-maternity clothes that made me feel less frumpy (actually giving me the shirt off her back to borrow).

Olivia sleeps through our photo session with Irene

Irene snuggling with Olivia during a feeding.

My dear friend Nancy also came to visit towards the end of April and we had a wonderful time together. Nancy's nurturing soul and positive energy lessened my fears about the transition ahead as we plotted Olivia's pilgrimage home. She also served as solid support for me when Olivia crossed over one of her biggest milestones during our time at Swedish (more on that below). 

 Most recently, my longtime girlfriend Heather came out to spend a weekend with me. Heather has seen me through many life changes, so it was especially important to me to have this time with her.  There is an automatic comfort that comes from being with a friend that has a shared understanding of your dreams and challenges. One who knows your patterns and can help you through even the toughest of times.

Heather stops by for a chat with Miss Feisty

Several additional wonderful friends were also in town over Easter for a joyous occasion - Andrea & Cameron's wedding.  Janet, Hilary, and Bonnie along with Bonnie's husband Ted were so thoughtful to take time out of the weekend's festivities to visit with Olivia at the hospital.  These girls have all individually (and collectively along with a few other special friends at home) made me feel supported cross the miles.  One of their many sweet gestures has been to send me the menus from each of their monthly Atlanta dinners - complete with written cheers on them for Olivia, critiques on the restaurant's cuisine, and humorous notes about the evening's ongoings- making me feel like I was right there with them!  I can't wait until that day actually comes.

Celebrating Andrea's wedding at the Space Needle with Atlantan friends Bonnie, Janet, & Hilary

My NICU Tribe

During my eleven days in Swedish Hospital's Antipartum Unit back in January I often felt isolated in my experience as I clung to the hope that somehow I'd stay pregnant, beat the odds and both of our twins would make it to at least 28weeks gestation and survive.  Dan was amazing support during this time, but I longed to meet other women in the Antipartum Ward also captive in their beds in the surrounding patient rooms.  These women were only inches of plaster and dry wall away, many experiencing similar preterm ordeals. It wasn't until Olivia was born and transferred to the NICU that I was able to meet these mothers, hear their courageous stories, meet their supporting spouses and families, and forge new bonds in light of our precarious situations.

I have met nearly a dozen wonderful moms and had the honor of walking step by step with them as our babies have slowly grown and overcome various obstacles on their way to reaching Full Term and their originally targeted Due Dates.  I have gained strength and inspiration from these women: Heidi, Missy, Jamie, Brandy, Anne, Heather E., Heather S., Angela, Regina, and Christi.

 A quick dash to the Seattle Art Museum with NICU Moms Anne, Heidi, & Jamie between Care Times

Celebrating Jamie's birthday (our Alaskan NICU mom) with her mom, Missy, Heather, and Heidi

Lunch break with NICU Moms Heidi & Angela and one of our amazing March of Dimes Mom Mentors, Annette.

Over the last few weeks, many of these phenomenal moms have transitioned with their babies to the ISCU and eventually headed home with their new families.  It has been hard to say 'goodbye' to them knowing we can't just meet up at Starbucks in Buckhead or schedule a weekend play date in a few months. But I am grateful to have met each of them and I plan to stay in touch on our 'Babies without Wires' Faceboook group. (....Once I finally get back on Facebook and begin responding to all of the thoughtful messages and posts from many friends. Thanks for your patience everyone.  I've actually forgotten my Facebook password - how sad is that!)

My Favorite Islander

Ok, enough about me!  I have several wonderful pieces of news to share about our little Miss Feisty O:

For starters, Olivia's last eye exam showed her eyes have matured and her ROP has completely resolved itself!  She will likely not have to wear glasses early on or see an Optometrist for another year. 

Wide-eyed wonderment

Sweet sleeping cherub

During Nancy's visit, Olivia's doctors also decided she was ready to make the big moved downstairs to the ISCU.  This is a prerequisite for her to eventually be released from the hospital.  In the ISCU the nursing care is more managed as 'group care’ in which one nurse is assigned to all of the babies in a room vs. the 1:2 ratio of the NICU.  Parents are also given much more latitude to spend time with their babies throughout the day since most of the babies either have care times every three hours or on-demand schedules.  When Olivia moved downstairs I was caught off guard by how emotional the move was going to be for me.  I had to say a teary 'goodbye' to all of amazing NICU nurses, doctors, and respiratory therapists that had cared for Olivia for over three months.  Although I will not see most of them on a regular basis, their talent and dedication to Olivia's welfare will never be forgotten.

Olivia has been very busy the last few weeks sleeping, growing, and developing.  In early April she reached 5 lbs and by the end of the month she was closing in on 6lbs!  The change in her size astounded me the other day when I realized I could no longer get her into preemie clothes.  One of the best benefits of her increasing size is that her lungs are also maturing.  As of week 38, she was able to step down off of Vapotherm and just receive a steady flow of light oxygen off the wall, getting her closer to finally breathing room air.

 Super swaddled swabbie (say it 10 times fast!)

The next challenge Olivia faces is learning how to bottle feed.  In order to be released from the hospital, she must be able to take 6-7 bottles a day, and the remaining 1-2 via a gravity feed NG tube threw her nose or as a last resort, through an attached stomach tube.  Simultaneously, the volume she is also being given at her feedings is being steadily increased on a daily basis in order to get her stomach to expand to support her growth needs.  Preemies tend to have delayed feeding development skills and building their endurance is often paralleled to training for a marathon.  Olivia has a strong inclination to feed, but often gets exhausted after taking a partial bottle which leads to her oxygen levels d-sating and her monitor alarms going off.  She then needs to sleep through the next feeding in order to recover before attempting bottle feeding again.  A helpful Speech Therapist named Barbara is coaching us on ways to teach Olivia to pace herself through a feeding and remember to suck, swallow, and most importantly breathe as she eats.  Progress is slow, but we are getting there more day by day.

Daddy & Olivia beginning to learn the art of bottle feeding

Hats off to bonding time with Daddy!

Thank you for continuing to follow Olivia's story. 

We are hoping to escape our surroundings and head home soon.  In the meantime, we feel extremely fortunate to have everyone's love and support.  You've all shown us in so many ways that we are truly not alone across the many miles.  

 

Claudia

 

 

Saturday
Apr092011

Weeks 34-36 (Part 1 of 2)

Hi everyone – this is Claudia. 

Sorry for the delay in posting updates.  Since a lot has happened over the last few weeks, I’ll attempt to tackle two separate entries over the next few days.  ‘Part 1’ will focus on Olivia’s progress.  ‘Part 2’ will focus more on my journey and our recent Seattle visitors. 

Part 1: Why the Caged Bird Sings

The last couple of weeks have been filled with their share of ups and downs as Olivia focused on growing and tackling milestones instinctive to most full-term newborns. 

Good morning, cozy cutie!After 10 weeks of silence, I am thankful to report that Olivia has finally found her voice.  Having been on and off the ventilator three times previously, this may have strained her vocal cords and made it difficult for her to express herself.  There were many times in the past when I anguished seeing her open her mouth to cry and not hear a sound uttered – especially as her fellow NICU bunkmates wailed away around her.  We have discovered that Olivia has a very sweet and subtle cry – which she first expressed during her last eye exam (more on this in a moment).   Olivia chooses to only cry on the rare occasion when she is truly in pain – this must be due to her laidback relaxed disposition (lovely inherited from her dad – not me!)  I guess we should feel fortunate for this, but it is hard to when you realize just how much she has been through.  I hate to believe her threshold for pain may be higher due to her experiences as a micropreemie.  One benefit of her new found vocal cords is that she tends to use them to coo and ‘chirp’ when she is hungry.  These are sweet sounds that are music to our ears.

Learning to hold a pacifier. Just a few sucks and then she is breathless - but a great start!Olivia has undergone two eye exams in the last few weeks to determine if she has eye problems associated with prematurity.  These exams involve a special retractor tool which is used to open the eye socket wide enough so that the optometrist can see the back of the baby’s eye.  The child is given special dilatation and numbing drops to make the procedure less painful but most babies still cry during it.  Parents are also advised to not attend their baby's exam since it is unsettling to watch.  The risk of an eye disease called Retinopothy of Prematurity (ROP) is significantly increased based on the young gestational age of her birth.  Essentially ROP is a result of oxygen pressure fluctuations that can cause a baby’s retinas to detach.  Many cases lead to babies wearing glasses at a young age and in the worst cases, blindness.  The good news is that ROP can resolve itself as a baby grows or can sometimes be corrected with laser surgery.  Degrees of ROP range from 1-5 (mild to worst) and occur in 1-3 zones of the eye designated by the pupil, iris, or outer eye.  Olivia was diagnosed with Level 1 in one eye and Level 2 in the other – both in Zone 2 (around the iris).  It is too early to know if she will have sight problems, but her doctors will watch it carefully and we will hope it will diminish as she continues to grow.

Olivia is also having weekly physical therapy sessions with an Occupational Therapist.  These sessions are given so that her muscle coordination and response rate can be monitored and any development weaknesses can be identified.   Olivia’s grasping and kicking responses appear to be good (often put to use while displaying her feistiness fighting her diaper changes).  Still, since she is a micropreemie and has been contained to an isolette for many months, we have been given a set of exercises to perform with her regularly to strengthen her stomach, back and neck muscles.  Preemies tend to arch their backs a lot to get away from their ventilator or other procedures they find uncomfortable.  Since they are too young/small for tummy time, the therapy exercises help them strengthen important muscles they will use to eventually roll and then crawl.  I can’t help but want to hum - ironically - another Olivia's anthem (Olivia Newton John’s) “Let’s get physical” whenever I help with her exercises.  ...It turns out that baby leg/ab lifts administered prior to a diaper change have a fringe benefit - they help Olivia 'get things moving' below her cute Buddha belly!

 Olivia takes a break from physical therapy for a spa treatment - her first manicure

The isolation of the Isolette.The biggest new news in Olivia’s world is her recent transition to a crib.  After 75+ days in various incubators, she has finally left the confinement of these cage-like structures.  This has opened up a new visual and auditory world to her as she is much more exposed to the positive stimulus of her kind caregivers as well as the negative chaotic moments in the NICU.  Selfishly, I can’t help but love that I can finally pick her up on my own or lean into her crib and kiss her little forehead.  These small, sweet, affectionate points of contact make each day brighter for both of us.  As for the din of the NICU, I hear that it becomes so normal to babies that most parents invest in a sound machine to mimic the NICU noise when their newborns transition to home.  Luckily, my thoughtful brother-in-law Mark bought me one for Christmas (it still remains wrapped on my kitchen table where I left it with a few other presents I was looking forward to opening when I returned from our babymoon in early January).

 Waving to her fans from her new crib.

Great bedfellows bunking down for a napAs part of this transition Olivia had a bit of a rocky road in her breathing progression.  After getting off of her most recent round on the Ventilator, she was put back on Vapotherm providing her with air pressure via a nose cannula.  The doctors thought she was progressing well on this and then tried to take her down to just a simple Oxygen flow (also through a cannula), but she struggled with this d-sating frequently, and is back on Vapotherm for now.  Still, her mommy and daddy are very proud of her big move to a crib. 

Although Olivia is not fully free to fly to Atlanta, our sweet song bird is getting closer to escaping her confinements and making her long journey home.  Our hearts will soar when that day arrives.