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

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.

Warriors (weeks 32-33)

Early on we were warned that our daughter Olivia s stay in the NICU would be an emotional rollercoaster ride, and those words have proven to be prophetic.  After a couple of hopeful weeks off of the ventilator, she took a few steps back after receiving her recommended first round of inoculations at eight weeks of life.  Call it mother s intuition , Claudia become more apprehensive as inoculation day approached.

Enough!

Here is how she described it in a recent email to her sister-in-law, Holly.

We have had several smooth weeks and Olivia was doing really well on most measures until she had her 8wk vaccines (3 intramuscular shots) last Sunday. She then started DSATing (having her oxygen saturation drop) repeatedly and after having to be "bagged" (given a special air mask) when her heart rate dropped the doctors took her off Vapotherm (cannula) and put her back on CPAP (positive pressure mask). They then tried repetitively to get blood samples from her and ended up pricking her 8 more times. So the poor thing felt like a pin cushion by the end of the day and ended up back on the ventilator the next day. She then got her strength and her feistiness back on Tuesday and proceeded to acerbate herself on Wednesday (pull her breathing tube out by herself) - leading to another bagging and a prescription for Ativan to mellow her out when necessary. So it has been a long week!

When the phone rang last Monday morning at 1:15, I knew that it had to be something other than Claudia wanting to wish me sweet dreams.  Having just watched our daughter receive bagging number two, which resulted in the duty neonatologist being called to Olivia s aid, my wife needed someone to unload on.

There are times when a spouse can be at their best by doing nothing more than keeping quiet and letting their counterpart vent.  This was definitely one of those.  Both Claudia and Olivia had been through a lot the last few days, and that phone call, made while my wife walked back to the hotel, related everything bad that had happened since I had flown home to Atlanta on the 8th.  In my best tongue biting effort, I offered few words other than an occasional confirmation that I understood what the girls were going through.  After a while, I could feel her intensity diminish and the conversation gradually moved to one of calm acceptance.  As usually, there was little that either she or I could do. Olivia would have to battle this one more or less on her own while we remained relegated to concerned parent.

Visitor

Just a few days prior, Claudia, Olivia, and I had had the good fortune of a visit from my cousin, Dwight deLoach. Dwight s and my father were first cousins and lifelong friends growing up in Camden, South Carolina.  Camden is one of those picturesque small Southern towns in which moss covered oak trees define the property lines of the white antebellum houses along quiet streets and parks.  It is also rich in history.  Beginning with the American Revolution, Camden has not been shy about giving up its sons and daughters in times of crisis.  In fact my cousin Dwight and his family own and live in a house built by one of our ancestors, Gen. Joseph Brevard Kershaw, considered one of the Confederacy s most prominent and successful generals.

Compared to most, Dwight comes off as soft spoken, good natured, and deceivingly bright.  His look is one of reserved confidence, with a little mischief thrown in to prevent one from feeling off balance.  A gentleman, his manors are polished, not only in the way that betray his Southern upbringing, but also from the fact that they were honed by his time at Charleston s stalwart institution of military tradition, the Citadel.  Dwight is also a Captain in the SC National Guard and on his way to Afghanistan.  In other words, he s a good guy and patriot.

Claudia and I had missed Dwight s going away party due to our situation in Seattle, but the Secretary of Defense granted us a favor by posting him for training at nearby Ft. Lewis just prior to his deployment.  Meeting us at the hotel, and we proceeded over to the hospital for an introduction to his new cousin.  Since the NICU only allows two visitors per baby, Claudia had to wait while Dwight and I scrubbed and went in to check on Olivia.

Dwight says hello to his new cousin.

Knowing that Dwight would probably have a lot on his mind, including his family, men, and mission, I didn t expect him to have much enthusiasm for what lay in the Isolette.  But as I slowly pulled back the comforter from the Plexiglas to reveal our peacefully sleeping daughter, his first words as he peered down at Olivia were, "Man, that is awesome!"  You could tell immediately that he was sincere and for the next half hour or so that we visited was focused completely on her.  Proudly I attempted to demonstrate my proficiency at diaper changing, only to realize that having had two sons, the skill was undoubtedly in Dwight s repertoire.

Later, Claudia and I had the pleasure of taking Dwight to dinner at one of our favorite restaurants, The Black Bottle, where we dined on generously proportioned tapas, drank a few tasty local brews, and caught up on news from Camden.  With the knowledge that this man was about to be constrained to laws of an Islamic republic and of course with Claudia s blessing, Dwight and I probably had one more than would normally be called responsible.  I wanted to tell him all of the things that one would normally say to a friend of family member who is about to go into harm s way.  After a few beers it came out as, "Promise me that you will keep your head down and don t volunteer for anything."

Olivia likes to hold her head. We do too.

After dropping Dwight at the Marriott and during the ride back to our hotel, we chatted about how fortunate we were to be able see Dwight before his going off to war.

In the tradition of many in my family, including both of my grandfathers, my uncle, and my father, yet another had answered our country s call, and was departing for a foreign land.  There was a moment when Dwight was standing at Olivia s Isolette, his hand inside gently clutching hers, that I was struck by the sight of two warriors, both caught up in a struggle, largely out of their control, but doing so without much resistance or hesitation.  I rationalized that since Dwight and I had the same great grandparents, that Olivia, although somewhat removed, was indeed related to my cousin, and therefore to General Kershaw.  Some more feisty points in her favor I suppose.

Keep your head down and don t volunteer for anything.

High Fashion

Skipping forward now to the weekend of March 18th, I returned to Seattle hoping to see some improvement in our daughter s condition.  I arrived to find her back on the ventilator and received a report from the nurse that Olivia had had a few events the day prior, and due to a low hematocrit, had received another blood transfusion.  Great.  Without anything or anyone else to blame, we rationalized that she was still recovering from that first round of inoculations.  But that seemed to be the worst of it.  By Monday morning her condition improved enough for the surgeon to order Olivia off of the ventilator and back on the far less invasive Vapotherm cannula.

Monday was also March of Dimes photo day.  Once a month, MoD sends a very skilled professional photographer to the NICU to take photos of parents and their babies.  The photos are for the family only and a gift from that great organization, which supports the care of premature babies.  Anticipating this, Claudia and I had gone a mission the day before in search of a suitable outfit.  To this point I must sheepishly admit to not having purchased a single bit of clothing for my daughter, her outfits to this point being limited mostly to a micro diaper and swaddling blankets.  Now was time for action, so we hopped on the shuttle to Westlake Center in the heart of downtown.

After a couple of strikeouts in search of preemie attire, I Googled and plotted a course for Baby Gap, who it turned out has a reasonable selection of what we were looking for.  Giving free reign, Claudia allowed me to select items as I thought appropriate, a decision that she probably later regretted.  What I found was a black preemie singlet, with a motor scooter embroidered on the chest under which words read, Born to Ride.  Matching that was a black hat, also adorned in tiny motor scooters, and in another section of the store, a black tutu.  Those of you who know me well, will attest to my affinity for any two wheeled device.  It would be an understatement to say that I was satisfied with my selections.  All of the little pink outfits with flowers and frilly lace would need to wait until the next trip. Olivia would be dressed in fashionably black for the photos.

When the time came the next day to dress Olivia for the photos, I gladly accepted the duty.  As I stepped back from my handy work, I am not sure that Claudia and our nurse had the adoring looks that I was expecting.  Sure, the hat was a little big, and perhaps a style consultant might have not agreed that black was a good match for our daughter s reddish complexion.  Regardless, I proudly presented her thusly attired to the photographer, who being a young artsy type, found the outfit compelling.  Her words were something to the effect that of all of the babies she had photographed, this was the first dressed entirely in black.

Reluctant biker; happy mom.

However, no amount of gifts or adoration would motivate Olivia.  Apparently all of the attention that she had been getting the last few days had been overwhelming, and she decided to keep her eyes closed for most of the shooting.  Of course once the photographer had left, she perked up enough for me to snap a couple with my phone.  I hope that in fifteen or sixteen years when we show her the photos, she will forgive her parents for the treatment she received that day.

Why have you dressed me this way?Happily, during the remainder of my stay she began to improve.  Olivia having been off of the ventilator before, Claudia and I were expecting the worse.  But as you will learn in the next post our little warrior was out to prove to us, her health care providers, and any other naysayers wrong.  Claudia is anxious to tell that part of the story, so I will back out of here and say thanks again for reading and also for all of your kind words and support.  We are a long way from reaching the proverbial light at the end of the tunnel, but hang on.  I am beginning to think that this story will have a good ending.

Relaxing after having a shampoo from nurse Sharon.

Cheers,
Dan

Growth, Girl Time, & Graham’s Foundation

Weeks 30-31

(Another entry from Claudia...)

Growth

I am thankful to report that Olivia has made encouraging progress the last couple of weeks.  Now that she is back on my milk (via feeding tube), she is starting to gain weight and finally get some baby fat on her, which proudly first appeared as an adorable double chin.  Although she is still small, Olivia recently crossed into the 3lb range –doubling her lowest weight from January.  A third blood transfusion this past week has given her more energy to grow.

The biggest news is that Olivia was finally taken off the ventilator a little over a week ago.  We anticipated she would be put back on Cpap (the Velcro head mask apparatus), but to our surprise and relief she was put on Vapotherm instead.  (Vapotherm is a step closer to ‘normal’ breathing, providing a light flow of air via a nasal cannula.)  Advantages of this type of breathing apparatus are that more of her face is now visible and kangaroo time is easier and more comfortable for her.  The one nerve-racking thing is that on Vapotherm, Olivia tends to have more ‘DSAT incidences’ – which means her heart-rate, respiratory rate, or oxygen levels dip above or below acceptable ranges – causing alarms to go off on her monitor until she can adjust her levels back to a safe range, hopefully without the nurses’ assistance.  I think every NICU parent is conditioned to automatically tense each time they hear these alarms go off – looking around the ward to confirm if it is their child’s monitor or another’s.   It is not uncommon to hear these alarms in your head hours after leaving the hospital.

One simple joy experienced this week for the first time was Olivia being put in premie clothes.  Until recently, she has only donned a diaper, so I was delighted to find that with Vapotherm comes more freedom to start dressing her.  The IV in her left hand still remains so she must even wear her onesies and footed pajamas fashionably ‘off the shoulder’ for now.   Most premie clothes are still relatively big on her, but you can tell she is a little fashionista in the making.

Girl Time

For the first time since I landed in Seattle, I was very fortunate to have a girlfriend visit from Atlanta.  My dear friend Lee flew in for a long weekend of much-needed girl time in late February.  Seeing her was a bit surreal, since she was the first person from my Atlanta life to enter my Seattle scenario other than Dan.  It was a much-needed dose of reality and support that reminded me of the life I was missing while out here.

Lee has been an amazing friend throughout this ordeal, but even more so that weekend – spending time with me at the hospital taking care of Olivia and at the Silver Cloud during the four hours of intermittent breast pumping that now anchors my days.  She showed such love and tenderness to Olivia and was even there for the monumental moment Olivia came off the ventilator.  It was so nice to have her there to help celebrate this milestone.

Graham’s Foundation

As many of you are aware, I haven’t been communicating on a broad scale throughout the last couple of months.  However, please know that the outpouring of thoughtful cards, care packages, calls, and blog/Facebook posts have ALL meant so much.  This is primarily because the situation has caused me to turn more inward at times.  I only post here on occasion because I feel it is my responsibility to keep everyone updated on Olivia’s progress when I am solo in Seattle.  I have a wonderful friend and sorority sister from college who understands this better than anyone, since she too experienced the conflicting joy and loss of becoming a mom while losing a twin a few years ago.  Her name is Jenn and she and her husband Nick have been an amazing source of support for Dan and me.  

Jenn and Nick cultivated something very positive out of their own story – creating Graham’s Foundation, to honor their son and help parents of micro premies cope with the stress and uncertainty of the NICU.  You can learn more about their courageous efforts and the thoughtful care packages they send new parents at: www.grahamsfoundation.org. 

I encourage everyone to friend their organization on Facebook and connect them with your local hospital’s NICU ward or March of Dimes chapter to continue to help parents of micro premies everywhere so that Graham’s legacy can continue to live on and touch others.

Major Milestones & Lactation Logistics

(Retrospective on Wks 28-29)

Hello – this is Claudia. 

I am a little behind on providing updates from Seattle, so I will aim to post another entry on ‘Week 30’ in a couple of days...

Major Milestones

In addition to Valentine’s Day, the week of February 14^th marked several special events including Dan’s birthday, my brother-in-laws Mark‘s birthday (happy belated Mark!), and Olivia’s 1-month birthday.

Our head nurse Janet made a thoughtful sign for Olivia commemorating her 4-week milestone.  To culminate the event, Olivia FINALLY pooped!  …And pooped, and pooped – making up for lost time in a hurry.  This was a huge relief for us because it was a major indication that her digestive system was starting to work properly and she would likely be able to avoid surgery.  As a humorous tribute to Olivia’s efforts, Nurse Janet handed out Raisinets to the other NICU Nurses.

 

To commemorate her father’s birthday on February 16th, Olivia held an “incu-party” at her ‘crib’ (which is actually an enclosed isolette).  She invited her premie peeps from around the NICU ward as well as four new stuffed animal friends she received as gifts from her parent’s thoughtful friends in Atlanta and her favorite Labor & Delivery nurse.  As you can see from the photos, the celebration ‘pooped’ Olivia out (literally and figuratively) and our party girl ended up sleeping through the entire event – even the celebratory ‘toast’ with breast milk-tinis.

 

Week 28 also marked Olivia’s first real bath outside of her isolette.  (You can imagine at 4-weeks old, she was dying to get clean!)  It was a talented feat when the nurses and respiratory therapists maneuvered Olivia’s extensive tubing and monitor wires in a way that allowed her to be placed in an infant tub.  Olivia was a bit startled by the warm water but soon relaxed enough to poop in the bath and then again when she was being toweled off!

 During Week 29, Olivia finally gained enough weight to enter the 2lb range.  This may have been in part to a blood transfusion that gave her more energy and a platelet boost - all administered through her tiny foot.

 As she continues to grow, she often feels the need to stretch out a bit and de-swaddle herself.  Below is an image of a properly swaddled younger Olivia vs. how I found her recently one morning at her 8:30am Care Time – illustrating her interpretation of Houdini meeting the Karate Kid.

 

 

Lactation Logistics

To play on UPS’s latest ad jingle: “When your milk has to fly across the entire U.S. sky, it’s logistics…” 

Another big event that took place the week of Valentine’s Day centered on getting my breast milk out of the hospital and safely transported to Atlanta.  Since Olivia has not been able to consume any of it until recently due to her digestion issues, a lot of excess production has been stockpiling in various deep freezers throughout Swedish hospital. 

 

I was recently told that my milk had overstayed its welcome and it was time to free up freezer space for other existing patients.  This proposed a bit of a dilemma, since once breast milk thaws to a refrigerated temperature its expiration date accelerates.  Therefore, the goal is to keep it frozen when it is shipped, and the only way to do this for a large volume of product is to pack it in dry ice and send it via express overnight delivery.  So it certainly was a good thing that I was stranded in the frozen fish shipping capital of America.

To accomplish this task I was fortunate to have the help of our friend Cameron and one of Olivia’s favorite nurses, Sharon.  Cameron brought the largest Rubbermaid bin he could find which we filled with ice cubes and wheeled on a cart between the various freezers throughout the hospital where my lactation stash was stored. 

Cameron and I then headed to a local specialty store where we could buy the dry ice as well as special thermal boxes to ship everything in.  Unfortunately, this particular dry ice store decided to close early that day, so we found ourselves standing in their parking lot with our precious cargo threatening to sour.  Fortunately, Cameron was familiar with that area of town and quickly found another place where we could buy the dry ice nearby.  Upon entering the second establishment and purchasing the ice, we learned that they did not sell thermal packaging for shipping it.  To add to the stress of the situation, the closest UPS Store’s final pick-up time was quickly approaching and we HAD to make sure we made it to the store in time.  Luckily, this particular dry ice supplier took pity on our situation and mustered up a couple of old Styrofoam coolers from his back room.  So with little time to spare, we headed to UPS to box and ship everything to Dan, whom had recently purchased a deep freezer in Atlanta for the occasion.   

With the assistance of two helpful UPS Store owners and a wonderful UPS truck driver named Erin, somehow we got a good portion of the product packed up in time to ship out for first AM delivery the next day.  The one drawback to coordinating this shipment was ultimately the cost – three boxes of product ended up costing nearly as much as the deep freezer!  However, ultimately it was worth it, since UPS saved the day and delivered the product (still frozen rock hard) to our Atlanta doorstep at 7:30am the next morning.

The rest of the remaining milk returned with me to the Silver Cloud Hotel (currently my permanent home), where I was able to gain real estate in the hotel restaurant’s walk-in deep freezer.  We have now determined it will be smarter (and more financially feasible) for Dan to take a box of my growing milk inventory back with him on the plane each time he travels to-and-from Seattle over the next couple of months. 

This activity may seem excessive, but when you have a child in the NICU and there is so little you can do directly to improve their health and quality of life, you will do ANYTHING it takes to give them the best start possible.  Thanks to the dedication of those involved, Olivia will have a large supply of milk ready for her when she finally makes the pilgrimage to Atlanta.