Evan Spring Eden
Born at 4:58pm on Friday, November 18, 2011, in Vancouver, BC
Weighing 8lbs 8oz, 21.5 inches long
Due to complications at birth, Evan came into this world without breath or a detectable heartbeat. A phenomenal team of doctors and nurses at BC Women's Hospital in Vancouver, British Columbia, performed life saving measures with grace and confidence.
This month we will celebrate Evan's fifth birthday at our home in Portland, Oregon. Despite the odds, we are overjoyed to share that he continues to meet and exceed every milestone in his path. We are truly blessed and would like to take this moment to say thank you from the bottom of our hearts for the continued love and support. It takes a village and we remain grateful you are part of ours.
You can read more about Evan's story HERE.
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Two years ago, our son Evan came into this world without breath or a detectable heartbeat. He was cared for by a phenomenal team of doctors and nurses at BC Women's Hospital in Vancouver, British Columbia, who performed life saving measures with grace and confidence. We were cautiously warned that he may not awake from his treatments and, if he did, there was evidence to suggest the damage to his brain was significant.
Despite the odds, we are overjoyed to share that Evan continues to meet and exceed every milestone in his path. With each passing day we worry a little less, relax a little more and envision his amazing potential more clearly. He is an absolutely delightful boy and lights up the world with his infectious smile. Since his birth, Evan has traveled to seven countries and more than 25 cities.
We are truly blessed and would like to take this moment to say thank you from the bottom of our hearts for the continued love and support. It takes a village and we remain grateful you are part of ours.
You can read more about his story here.
Evan had a follow up physiotherapy session this morning at Doernbecher Children's Hospital. It was the first time we'd been back since he started walking a month and a half ago. He marched into the therapy gym like he owned the place and immediately started exploring. Our therapist Amanda was absolutely delighted.
Although she had a few suggestions for things we can do to improve his overall balance and coordination, it was mostly an expensive hour of fun and play. All things considered, I wouldn't have it any other way. (Unless of course we were still in Canada and it was a free hour of fun and play- LOL!) This week she will be preparing a final summary and a formal discharge from the program. Evan is "indistinguishable from normal."
Once again, we are so grateful our little man has reached yet another milestone in his journey. He has come so far. I can't help but wonder how far he'll go. He has proven that anything is possible and somehow managed to smile every step of the way.
A few small steps for a little man, one giant leap for hope.
Nearly 14 months ago a leading neurologist who specializes in neonatal asphyxia told us our newborn son would "never walk on his own."
I will never forget the look on my husband's face at that moment or the sound of his voice as he asked (with a lump in his throat) for further clarification on this statement. He requested that she make a prediction based on odds. Based on the findings from his MRI and other test results, would he have a one in 10 chance of walking unassisted, one in 100, or one in 1,000?
Without hesitation she responded, "One in 1,000."
As many of you know, we named this special doc Bad News Bear and marched on.
Tonight, it brings me incredible joy to share a short video captured just a few hours ago before I tucked Evan into bed. These are his very first real steps. Somehow my motherly instincts were on high and I manged to capture them with my iPhone. It is a good thing too because Dad and Sis were upstairs.
For anyone who isn't familar with Evan's story, I've just posted a brief summary online at http://martini.typepad.com/baby2/evans-story-.html
The teeth are coming! The teeth are coming! Two more pearly whites have pushed their way through up top. Evan continues to try new foods and is an awesome eater. He is eating more than Ava at the moment and I often wonder where the heck he puts it all.
We are feeling extremely confident about
Evan's overall development at the moment. However, we made an important promise to give him
access to every resource available to ensure he continues to advance. We are nearly half way through our "waiting period" for a
possible Cerebral Palsy diagnosis. Although his is getting close to walking, he isn't there yet and we want to continue supporting him in achieving this major milestone.
That said, we are finally registered with a fantastic team of doctors, nurses and specialists at Oregon Health Science University (OHSU). While we will truly miss working with Dr. Everett at BC Children's in Vancouver, our new pediatrician is fantastic. Darrin and I couldn't believe he spent nearly 90 minutes with us during our orientation exam. We'll be spending quite a bit of time "up on the hill" over the next few months as we begin visits with five different specialized departments. We've got health insurance and we're gonna use it baby.
In other news, Evan had the opportunity to meet several new friends at our family's housewarming. As usual, he was full of smiles and the hit of the party.
We've enjoyed attending some delightful birthday celebrations this month and have had the opportunity to participate in more play dates. We've also started to attend the bi-weekly mommy and me drop-in sessions at the Sellwood Community Center. It has been a nice way for both of us to socialize a bit outside of the house.
Ohh wow. Look! The leaves have started to turn colors.
With the turn of the season we've been celebrating the harvest (aka mom and dad are drinking a lot of wine!) One beautiful Saturday afternoon we went out to Sauvie Island to pick our punkins. The kids had a ball and we were blessed with perfect weather.
Evan had such a fun time carving the pumpkins that Ava decided he should be one for Halloween, so it was.
Since we went to a couple of different parties this year the kids had fun dressing up a few different times. They had a great time trick or treating around our neighborhood on the big night.
I know I am his mom and all, but this kid has the cute thing nailed. He is a magnet whereever we go. I actually really enjoy shopping with him.
It is likely too early to predict but if I HAD to bet, I'd say Evan has acquired the music gene. This same gene is present in both our families but apparently skipped over Darrin and I. The kid bounces and dances like crazy and he really truly loves music of all kinds. He doesn't talk a whole lot just yet, but he sings passionately in the car to the french nursery rhymes in tune! It is so stinkin' cute. He also loves the mini piano and strums Ava's guitar like a natural.
Speaking of predictions, look what message was inside Evan's first fortune cookie ..
Instant 10 month old. Just add blueberries.
The big news is that Evan is officially pulling himself up to a standing position. He is looking strong and confident. Below is a flashback of Ava's first few stand up moments posted side-by-side with her baby brother.
As we continue to unpack and settle into our temporary home, the kids are starting to have some fun playing together. It is a magical sight for this mommy's tired eyes.
Evan's has two bottom teeth and several more on the way. He is a great eater and doesn't seem to mind trying anything and everything we give him. The only dislike I've noticed is a particular lack of passion for mangos. Otherwise, it is all good. He has started reaching for his food and is demanding that he feed himself, sans spoon of course. I call this the "Mom, I got this" look.
Like his sister, Evan loves the water. Bath time is one of the greatest parts of our day. Thanks to his new feeding habits we often enjoy more than one opportunity to soak it up.
We managed to keep the baby backpack and have put it to good use the past couple of weeks. Living near the Spring Water Corridor provides some incredible incentive to get out into the fresh air. Below is a photo with Aani during her recent visit.
The weather has been outstanding and a 'lil swing time at the park always makes for a happy baby. That smile never fails to light up the world.
Below are a few other random moments I managed to capture this month. I love the one with Ava showing Evan how to do a "pinky promise." Evan in the shopping cart is another classic.
I am blessed.
Life is beginning to settle down a bit after our epic travels through Europe and our big move across the border to Oregon. While things generally feel disorganized, I have nothing but good news to share about Evan. He continues to thrive in is development and is one heck of a happy and healthy little boy. The nine month mark has been significant in a couple of different ways.
First, Evan is gaining strength in his upper body and can move himself from point A to point B. We have joined as members at the Children's Museum in Portland and the following photos were taken there as he explored the creative space in the toddler area.
Although still a bit dominate in strength on the right side, Evan has nailed the "army crawl" maneuver and boy can he cruise around.
He is demonstrating great bravery by starting to pull himself up! What an awesome sight to see. He always looks so proud of himself after doing so and his sister is wonderful at providing encouragement.
Once again, Evan was blessed with the opportunity to spend time with Uncle Jim and Aunt Lynn from Florida as well as Uncle Bob from Korea. It was wonderful to reminisce about our amazing adventures in England. Cousin Savanah also came along for a play date.
Toward the end of the month our family transitioned from a vacation rental into a more long-term rental. Along with a greater since of stability, Evan enjoyed getting reaquainted with his toys.
Evan also had the opportunity to meet his Grandpa Dale and Grandma Diana. Labor Day Weekend was spent enjoying priceless time with family. Moments like these help us justify the move back to Oregon.
Surely it will take another couple of months before we find the rhythm of our new routine here in Portland. In the interim we are doing our best to soak up every ounce of sunshine and follow Evan's lead on simply lovin' life.
Hi. We're traveling through Europe at the moment and mom is keeping a special blog.
Please visit www.travelofeden.com for updates!
I am pleased to share that our appointment at the hospital went extremely well this morning. We met with the same neurologist who, on his fourth day of life, cautioned us that Evan would likely never suck and swallow or learn to eat normally. I couldn't help but smirk as he tipped the scale at 6.6 kilograms (14.5 pounds) and measured close to 63.5 centimeters (25 inches) long. Darrin has nicknamed him "Butterball" for the moment and we love, love, love every pinch of his beautiful baby fat.
The best news was that the results of his EEG from last week were normal! This report, combined with the fact that we haven't witnessed any seizures the past three months, has given us the green light to wean him off Phenobarbital starting this evening. Hoooray!
This same doctor (aka Bad News Bear) also told us three and a half months ago, based on the results of his MRI he "will never walk on his own." She didn't sugarcoat it or say it softly. She just plain and simple told us to prepare for him to have severe mobility issues.
While she does have a few concerns regarding his overall muscle tone, her tone was much different today. She was impressed by Evan's developing motor skills as well as his overall demeanor. He was alert, happy and freakin' adorable during his exam. We will of course be diligent with his physiotherapy as we monitor his progress in the coming months. We will also continue to give him every therapy available with the hope that he is able to march himself back into that office a year from now. Today, however, we are breathing a little lighter and celebrating this precious milestone with our drug-free baby.
Thank you for all your love and continued support!
As he turns three months, Evan continues to fill our hearts with joy. He is such a happy boy, giggling and smiling more often than not. This past month has passed quickly and we've kept pretty low key. We aren't in any sort of a routine just yet regarding eating and sleeping but I am pleased to share that both activities are going well. We've enjoyed good quality family time and shared some delightful baby's firsts. One of mum's personal favourites is captured below ... FIRST in line at the Winter Farmer's Market for Pure Bread! What more can a three month old ask for?
We also made our first splash at the Hillcest Aquatic centre. Evan loved the water and was the star of the pool. It was lovely to see him bring so many smiles to all the other swimmers. There is no doubt, he is his father's son.
We are beginning to see the first few signs of spring around Vancouver. Between rainshowers we've been sneaking out for strolls around the neighborhood. Go little blossoms, go!
We're fitting into size 3-6 month clothing now and can sit up in our blue Bumboo seat.
This month we had a puppy named JJ over and enjoyed several other first playdates with friends,
made friends with a baby Beluga during our first visit to the aquarium,
celebrated Dad's 37th birthday and our first Valentine's Day,
shared some nice play time with Riesy,
and saw Aunt Lori and Uncle Joe when they came to visit, bearing treats from Portland.
We've also been getting lots (and lots) of love from big sister Ava,
and wore our first pair of brown corduroy overalls with cow slippers of course ... seriously cute!
9 months +3 months = 1 year
This month also marks one year since Evan was conceived to be more than just a twinkle in our eyes. We are so blessed. Clink, clink!
I woke up at exactly 5:00am today to feed and change a hungry baby. As I quickly transitioned from totally exhausted to barely functional, I realized that my life as a mother of two small children began at 5:00am two months ago when I awoke with labour pains on November 18.
What a strange coincidence that the world was covered in fresh fallen snow that morning as well. The same eerie silence buzzed in my ears and a familiar chill brought goosebumps as I carefully moved Evan from his cozy warm bed to the change table. I started to unbutton his sleeper and my mind wandered back to the butterflies that danced with my contractions early that dark morning and the tremendous anticipation and anxiety that followed.
As I gazed down through burning, blurry eyes I found him staring back at me. His bright eyes glistened from the faint glare of the street lights. As they locked with mine a giant smirk came over lips. His expression was priceless; worth a thousand words. It was as if he too was thinking about his birthday and wanted to tell me something - "It's all good Mom, it's all good."
Evan is a sweet baby. It is easy to adore him. He is patient, calm and quite often relaxed. He is extremely observant and finds great pleasure in quietly checking out the world around him. Often you'll find him with a furrowed brow, deep in concentration.
It has been a joy to watch him become playful the past few weeks. Darrin does this thing where he gets up close to him and gently blows in his face. He just loves it! He will laugh and laugh. Totally precious. He has also started "talking" and seems to have a surprising amount to tell us.
This past month we celebrated baby's first Christmas and welcomed a new year while on a road trip to Portland. It was a bit of a whirlwind adventure but our little man met several friends and loved ones.
Ava and Evan are becoming good friends. I get such a kick out of watching them interact. Now that he is a bit stronger we don't have to be quite as nervous about her involvement. At the moment her favourite thing to do is hand him his toys and encourage him to grasp on ... that is when she isn't using him to hold up her iPod so she can watch Happy Feet.
The kids had their first bath together and great fun was had by all. It is not surprising that Evan is also a water baby. Soaking, kicking and splashing make him very happy. Darrin and I have added "big bathtub" to our wish list for our next home.
Overall, Evan's development is going well. He weighs 12lbs now and is growing like crazy. He has received a positive report from both the pediatrician and our family doc. He just had his well baby appointment and received his first dose of immunizations.
We've started doing physio as well as massage therapy as preventative measures. The Vancouver Infant Development Program has been wonderful in providing support and resources for these treatments.
It will be another three to four months before we can start to see what (if any) motor skills may have been affected by the injury. We remain hopeful that his brain continues to do miraculous things and will create paths around the damaged area.
Our next big appointment will be in March when he has another EEG. This information will be helpful in determining if we can start to wean him off the Phenobaratal (anti-seizure medication.)
Evan and I returned to the NICU at BC Women's Hospital with a giant bag of donations for some of the little friends we met during our stay. It was such a humbling experience to be back behind those walls. The donations were well received by several nurses (and doctors) who were delighted to see Evan looking so strong. My hope is to make this a bi-monthly activity. Please let me know if you are interested in contributing to our next care package.
I keep saying how different it is having a newborn in the winter as opposed to the summer. (Ava is a July baby) Getting the kids bundled up to go outside is a major chore. As with everything, some days are easier than others.
"”I skate to where the puck is going to be, not to where it has been.”
- Wayne Gretzky
It is hard to believe we've been home from the hospital for nearly a week. Evan is doing extremely well. As far as we are concerned, he is a perfectly healthy and happy baby boy. He has a lovely disposition ... patient, calm and very sweet.
He is nursing consistently every three to four hours and falls asleep ever so peacefully. We get to enjoy a lively half hour of awake time between feeds when he is most alert and curious. At the moment, he seems to be fascinated by the white lights on the Christmas tree. He's definitely a little poopin' machine and Darrin got to experience his first baby boy pee shower a few days ago. Heee heeee! We also gave him his first bath which he didn't mind one bit.
As far as follow up medical visits, we have an appointment in one week to review the final discharge report with our new pediatrician at the hospital. Otherwise, Evan's next scheduled visit will be in three months to assess the possibility of discontinuing his maintenance dose of Phenobarbital (anti-seizure medication.) They will likely preform an EEG at that time to take another look at his brain waves.
In case anyone is wondering, our final bill from the hospital for Evan's birth, twelve days in the NICU, two MRI screenings, an EEG and a magnitude other tests was $390. This charge was for an upgrade to a private room in the maternity ward, plus another $4.98 for a 90 day supply of Evan's medication. We do not have extended insurance coverage or additional benefits, we are simply residents of British Columbia and pay our taxes (less tax then we paid when we lived in Multnomah County in Oregon.) Think what you'd like about socialized health care but as someone who has lived here for six years I have nothing (I repeat nothing) negative to say about Canada's publicly-funded system. Given the events of the past two weeks, we now have some serious research to do to see if moving back to the States this spring is still a realistic option. As small business owners with a son who has a pre-existing condition, we may not have the opportunity to buy independent health insurance for our family. It blows my mind to think about it.
Aside from ongoing physiotherapy, we will be taking things one month at a time from now on. (I have to say I definitely prefer this over one day at a time.) By six months we will start to see what areas may require a little extra attention and continue from there. He is scheduled for a follow up MRI on his second birthday. We've been told any apparent motor symptom delays will stabilize by this time. For now, it is all about smothering him with our total love and affection. Something we are finding quite easy to do.
While we are busy adjusting to our new life as a family of four and preparing for Evan's first Christmas, I can't help but think about the 60-70 families still in the NICU down the street. Moms and dads like us from all over the province who have left family and friends far behind to be with their little angels for days, weeks and often months at a time. It was a true honour and privilege to get to know a handful of them personally during our twelve day stay. Each of their individual stories are nothing short of amazing and their strength, courage and dedication will be an inspiration for years to come.
On several occasions I remember speaking with friends and family members about Evan's progress while in the hospital. I seemed to hold it together pretty well for most of the conversations, until I mentioned the other families surrounding us. I found myself saying more than a few times, "The next time you think you are having a bad day, come hang out in the family lounge in the NICU and I promise your perspective will change quickly." I don't think there is another spot on the planet where hope and uncertainty are intertwined in such a miraculous way.
We were blessed to be living a short ten minute drive from the hospital with friends all around offering their support. I simply can't imagine what it would be like to be transported to a new city with your husband and loved ones hours away. Most of these parents stay in the Easter Seals House Vancouver. Despite the fact that the accommodations are basic (each room has a small kitchenette, private bathroom and two twin beds) the residents appreciate the fact that the atmosphere is warm and friendly, the location is within walking distance and the price is affordable. There is also a family playroom and a shared kitchen.
It just doesn't seem right not to contribute in someway to this special place. As I have learned over the past few years, sometimes the little things can mean more than anything. After talking with a few people staying there it sounds like the following items are always needed ... comfortable twin bedding and pillows, kitchen supplies, children's books and toys as well as soaps, shampoo, lotions, toothbrushes and other toiletries. On a larger scale, the house does not currently have internet (imagine being far away from everyone you know and not being able to feel connected) or freezers dedicated for breast milk. I don't have a plan in my head yet but somehow I'd like to help them acquire these things. Please let me know if you are interested in helping.
On that note, several people have asked about the best way to donate to the hospital. While they are currently raising funds for a desperately needed new facility (http://www.beasuperhero.ca/) I would also encourage a personal donation to the NICU directly. The hospital has all the necessary things but it is the small comforts that help families cope through the tough times. Little things such as gently worn preemie and newborn footless sleepers that button or snap all the way up or, even better, wrap and tie. They also need receiving blankets and soft cuddle blankets. These items can be dropped off at the reception desk of the NICU anytime. For those who live nearby, I am working on putting together a large holiday basket and would welcome contributions.
I can't tell you how much it means to see your baby dressed in real clothes for the first time. It literally makes a world of difference and helps you to start bonding. Not being able to hold Evan for over a week, I found great joy in the simple act of dressing him. I was lucky to live nearby the hospital and be able to bring clothes in for him. Most of these families have come from elsewhere and have nothing but the essentials with them. My heart goes out to each and every one of them as they continue to live one day at at time.
We've reached our light at the end of the tunnel and our twelve day stretch at the NICU has come to an end. Evan is now home with us, safe and sound. He has been sleeping on Grandma Eden's lap since we arrived around 3:30pm this afternoon. There simply aren't words to express our feelings at the moment.
Upon our departure we learned that the same doctor who was the first to arrive at Evan's birth (and the first to begin lifesaving measures) has agreed to be our pediatrician. He is an amazing man and has played an important role in our journey the past two weeks. I don't think I mentioned it earlier, but it was a total coincidence that this doc was outside our delivery suite when we needed him. He was just next door causally speaking with the receptionist when our midwife rang the emergency call button. We are extremely blessed to have him on our team for the future.
I have much more to say in summary of our experience but for now, we've got some serious family cuddling to do. Thank you all for your continued love, support and warm wishes. It has meant more than we will ever be able to express.
Evan is like a little celebrity here today. Both a mom and a doc stopped me in the hallway on my way in to the NICU this morning with big smiles and words of encouragement. They were happy to share that Evan passed the "Car Seat Challenge" last night and apparently he was quite adorable doing it. He was alert and looking around the whole time. After almost two weeks in the hospital overcoming major lifethreating challenges and it feels a little silly that his final obstacle is to spend an hour in an infant car seat without any monitors or intervention. GD we've come a long way baby!
A successful car seat challenge spreads like wildfire around the unit. It symbolizes that someone has finally reached their light at the end of the tunnel. Evan's friends have been stopping by his bedside to say hello all morning. We will never forget the people we've met along this journey. There are families here from all over Canada who have been in hospital for four, five and even six months. My heart goes out to each and everyone of them. (More on this later!)
Since we're on a roll, I am thrilled to share that, despite what the doctors prepared us for, Evan's ten day MRI scan showed "a noticeable decrease" in the severity of the damage seen at day four. It appears that some of the injured cells did in fact heal themselves through the cooling protocol. I was deeply touched by the words of the radiologist who called (on his day off) to share the news with us. He wished us all the best and said he is looking forward to seeing what Evan will do in the next three months before he sees him again.
The discharge doctor has done her exam and Evan successfully passed an infant hearing screen. The wheels are in motion ...
Good news! Evan was able to get his second MRI done today. We had to stop feeding him at 10:45am and the poor baby stayed hungry until 4pm when he finally went in. He also had to have his IV line redone because the one they put in on Sunday night for Monday's appointment closed up. Evan was super patient throughout the entire thing. Bless his little heart. I'm just happy that it is now done-ditty-done.
It did help take the edge off that the two anesthesiologists who came to pick up Evan were absoutley gorgeous. They looked like they just walked out of a House episode. The entire nursing staff (and all the nursing moms) did a double take when they came into the room. I guess that is one way to obtain a parent's consent and make them instantly forget how long they've been waiting with a starving baby ... send the hotties to the bedside. It must have been a lucky day for eye candy in the NICU because a new team of very attractive paramedics were also doing training in the unit this afternoon.
The other good news is that Evan did great job lying still and they were able to complete the scan with a mild sedative and an oxygen mask. He woke up within a half hour afterward and had a solid 20 minute breastfeed. SO, I hesitate to jinx our luck, BUT if all goes well we can bring our baby boy home tomorrow. Stay tuned for the long awaited photos of our homecoming.
To celebrate baby brother, Darrin, Ava and I went to Salsa & Agave in Yaletown for nachos and icy cold margaritas on the rocks. Since it just so happens I have an awesome team of nurses feeding my baby liquid gold colostrum by bottle all night, I thought I would use my first "pump and dump" pass and enjoy a cocktail. It was first real drink I've had since March, nearly ten months ago and I enjoyed every sip. Now it is off to bed, hopefully, for the last time with an empty cradle beside me.
This morning we said farewell to Evan's NG feeding tube. This was a big milestone for both of us and means he has fully established successful breast and bottle feeding. (Trust me, this is harder than it sounds here in the hospital. These docs and nurses have some pretty high standards.) Anyway, the silver lining to all this is that we will be bringing home a baby that WILL take a bottle. Despite our best efforts, Ava simply refused it when she was a baby. I am already looking forward to sharing some of the night time feeds with Dad.
On a less happy note, Evan's MRI appointment was bumped this morning. We were all set and ready to go at 8am (Poor baby had an IV put into his little foot and had been fasting since 4am) but they never came to get us. Apparently there were several emergencies on the docket and Radiology is extremely backed up, blah, blah, blah. The thing is, we can't take him home until he has this scan and has fully recovered from the sedation and/or anesthesia.
Until today I've done a pretty good job of managing my emotions about bringing him home. Of course, it was always on my mind but I didn't allow it to feel "real" until this morning. All at once, I experienced this incredible urge to start getting on with our lives outside of the hospital.
Alas, it will be sometime tomorrow afternoon or Wednesday before they can get him in for the scan. This means he won't likely be home with us until Thursday. In the big picture this isn't a big deal but right now it is super sucky. Part of me feels bad complaining as there are several babies in the NICU unit who have been waiting weeks and weeks to get an MRI. In some ways we should consider ourselves lucky to have been given priority.
Anyway, I am going to try to take advantage of the fact that Evan has an amazing team of nurses taking care of him. He is totally healthy and happy and loving the all the attention. I think I'll walk up the street to get a pedicure after his next feed. Happy feet make happy mums.
I managed to get official doctor's orders written into Evan's chart at rounds this morning for "on demand feeding." Sometimes, Mom knows best and I am happy to share that it totally worked. We started out with a 12 minute feed at 8am and he has been nursing well every two and a half to three hours since. We just now celebrated 14 minute and 58 seconds of rock star sucking and swallowing! Go baby go! He will be given a bottle throughout the night and the feeding tube will only be used if absolutely necessary.
Going home now depends on whether Evan is sedated for his MRI tomorrow morning or if they have to put him under general anesthesia. We have been told he will need to monitored for 24-48 hours depending on how things go with that process. Once he is fully awake after the procedure and breast feeding has been reestablished he is ours for the taking.
On a related note, one of the lead nurses here has a loud, lovely and super strong New Zealand accent. (Megan, I swear she looks and sounds exactly like Grandma New Zealand. I smile everytime I see or hear her. She's from Waiheke Island.) Anyway, I had just put Evan down and saw her walking towards us out of the corner of my eye. She was looking very serious. She stopped at his bedside and pulled her glasses down onto her nose. Over the top of the thick black rims she looked me right in the eyes and said, "I'm afraid we're going to have put a microchip in Evan." I stared back at her with a blank expression for what seemed like eternity. Finally my mouth spoke before my head had time to filter the words, "What the hell for?" She put her hand on my shoulder and broke out with a big belly laugh. "He is just too stinkin' cute. Too many nurses keep trying to run off with him."
Evan made great strides with breastfeeding today. He had five successful feeds ranging from six minutes to eleven minutes. This is wonderful news, however, they want him feed for at least 15 consecutive minutes before they will consider taking out his feeding tube. My preference would be for him to be able to eat on demand but that is next to impossible to do in the hospital. He is getting a measured amount of milk every three hours. We'll keep working together to make this happen. Establishing long feeds rarely ever happens overnight with any baby.
It is nice that the nurses are listening and have agreed to start giving him a bit less milk through his tube this evening so he is more hungry in the morning. He is also taking a maintenance dose of Phenobarbital to prevent seizure activity. This is known to make babies sleepy which doesn't help our efforts.
The only other bit of news is that we have our ten day MRI scheduled for first thing Monday morning. These results will be compared to the MRI taken at day four to determine what, if anything, has changed inside Evan's head over the past six days.
Evan and I enjoyed a lovely visit with Ava today. Daddy took her to the aquarium and then to the hospital to see baby brother out of his crib and in his mum's arms. It was a special moment for our family.
We promised Ava she would get a pink AND a purple cupcake on her baby brother's birthday. Needless to say, other distractions have taken priority and sadly there have been no cupcakes. When she arrived at the hosptial, Evan had a special gift for her. There were two jewlery boxes shaped like cupcakes, one pink with a necklace inside and the other purple with a ring. Here's a photo of Daddy putting on her pretty necklace. Afterward, we all sang "Happy Birthday" to Evan.
I also bought a stuffed blue Orca whale for Ava to give to her baby brother. I thought for sure the whale would be going home with her, but instead she was extremely excited about giving it to him. She kept trying to get him to hold it with his little hand. It totally warmed my heart. She is an absolute angel. Words can't express how much I miss seeing her throughout the day.
I am spending a lot of time of alone at the hospital now and would welcome short (5-10 minute) visits from friends nearby. I simply can't wait to for you all to meet Evan! Please email if you are available and interested in coming by today or tomorrow and I'll send more details.
Just a quick note to let you know Evan enjoyed breakfast on the boob for five minutes this morning. The pumpkin pie and whipped cream I ate at 7am may have helped a bit but this is a very encouraging sign. We're looking forward to a lunch feed within the hour.
Ohhh yeah, and Dad changed the first of many poopy baby boy diapers. ;>
A picture says a thousand words, but talk is cheap.
I'd be lying if I said we didn't receive bad news today. We have been told from the beginning that Evan suffered a lack of oxygen and lack of blood flow to his brain in the final stages of the birthing process, resulting in some degree of damage. Hypoxic ischemic encephalopathy (HIE) is the medical term for this condition.
Today's report further confirmed this information to be true and reveled additional detail about the severity of the injury. The long story short, his MRI showed "moderate" damage (grade 2) to a few areas of his brain, but the most relevant occurred in the basil gangila region. This is a core part of the brain, deep inside the skull, that helps start and control motor movement. This is definitely not encouraging news. We were also told some pretty depressing things about the possible long-term outcomes based on these findings.
To be honest, however, this information isn't all that valuable to us as Mom and Dad. Although they have fancy studies, complicated charts and sample data to compare, no one really knows what this means for Evan and his little punkin' head. Even with a few bumps and bruises, his brain is an absolutely perfect, totally brilliant machine with self healing capabilities beyond what anyone can predict. I believe with my whole heart and soul he will find ways to overcome and continue thriving, just as he has over the past seven days. The bottom line is that there are success stories out there and we plan to be one of them. What exactly that means, I am not entirely sure.
What I do know is that Darrin and I are totally and completely committed to giving Evan as much support and love as humanly possible. We are committed to making sure he has every opportunity available to help him to learn and grow. We have already been assigned a child development specialist from the hospital and will begin doing physiotherapy as early as next week.
Just after our meeting, Darrin and I returned to Evan's bedside to cuddle him a bit and prepare for another breast feeding attempt. I was sitting in a rocking chair and had him in laying down in my arms. Darrin leaned over from behind us to make eye contact and give him a kiss on the forehead before heading out. Evan looked up at him with big glowing eyes and even made a bit of a smirk as he reached up his little hand, grabbed the bridge of Darrin's eye glasses hard enough to remove them from his face and pulled them off onto his little lap. We were both a bit shocked and started laughing which quickly lead to tears. Evan just gave us a little sigh of satisfaction and then smiled again. It took Ava two years to break a pair of her Daddy's glasses that way. This little monkey didn't even need a week. He seems to be a pretty smart little man to me.
My main priority over the next couple of days will be to establish successful breastfeeding. As soon as that happens they will remove the feeding tube and we can bring baby Evan home to be with his big sister and Riesling kitty. Tomorrow we are moving out of the NICU and into the Intermediate Care Nursery (ICN) for the final days of our stay.
Look mom! No strings attached!
Another big milestone today as Evan is now wireless! We are attempting to breast feed but he appears more interested in playing then eating. I am certain he'll get the hang of it soon. For now, he is getting my milk via a small feeding tube through his nose.
We are meeting with the whole team doctors at 1pm today to review test results and establish our next steps. More to come.
This conversation ocured while I was breastfeeding (yeeeepie!) Evan for the first time this evening ...
Nurse Allison:
"Elaina, have you counted Evan's toes?"
Me (inside voice, as I panic to move the blanket away from his feet):
"OMG ... NO! I have NOT counted Evan's toes. WTF? You mean to tell me that after ALL this, the poor little guy is missing a toe I haven't even noticed."
Me (outside voice):
"No, why?"
Nurse Allison:
"Ohhh ... good then you won't notice that I ate a couple a few minutes ago. They are so darn cute I simply couldn't resist."
It has been a beautiful day here at the hospital. Evan is breathing on his own and has all but one of his "strings" deattached. We are still waiting for the combined analysis of his tests but at the moment, none of that mattters one bit.
On behalf of the FOUR of us, I want to let everyone know we are thinking of you and your family today as we celebrate Thanksgiving with our family from the States. May your day be filled with one tiny blessing after another ... ours certainly has. The pictures say everything.
Ava saying hello to her baby brother. Her words to me were, "Mom, he needs a bottle!"
Okay, little miss Ava, you got your wish. My words to her were, "He needs to be held."
9pm
There isn't much new to report this evening. Evan has a good day. He is still pretty sleepy from the anesthetic so we basically let him sleep peacfully a majority of the evening. The next major step will be to get him breathing on his own. Once he is free from the CPAP we can start introducing him to milk and hopefully get him feeding. For now, it is all about sweet dreams.
11:07am
Baby is back from the MRI. We were told he "smiled for his pictures and did well." He is still sleeping from the anesthetic but they have already removed the breathing tube (a good sign) and he is back on the CPAP receiving oxygen. He should be waking up over the next 6-12 hours and we look forward to hearing those darling "coos and eeeews." It will be 24 hours before we have a briefing on the results all the data they have collected over the past four days. How appropriate that this falls on our second Thanksgiving.
7:30am
When we arrived this morning Evan was dressed in a pair of real pajamas ... a darling blue and white striped baby sleeper with an ity bity diaper underneath. The night nurse also gave him his first sponge bath. He looks so sweet. All dressed up and ready to rock the day.
They stopped his morphine drip at midnight and have removed his urinary catheter . He is still very alert and has started opening his mouth wide open and is using his voice for the first time.
They are preparing him for the MRI as I type. He'll be put to sleep with a breathing tube for the procedure. We've been prepared for it to take 12-24 hours for him to fully transition back to where's he's at and have the opportunity to continue making progress.
Big big hugs to everyone for all their love and support! We truly could not do this without you.
Tuesday, November 22, 4pm
We've enjoyed every precious second of our time with Evan today. His eyes are open and he is alert, responding well to our touch. He is almost completely warmed up now and has nice little blanket to cuddle up with. He finally looks comfortable and cozy, more like the way a baby should be. He is taking a soother occasionally and begining to show signs of being hungry.
He is still receiving morphine and anti-seizure medication and is requiring breathing assistance. His MRI was rescheduled for tomorrow morning around 10am. This will give him a bit more time to complete the final "warming up" phase and start slowing down some of the extra assistance he is getting. They will need to insert a breathing tube and sedate him with a general anesthetic for the procedure. So we are fine to wait a bit longer for him to continue gaining strength. It will take 24 hours before we are briefed on the results anyway. We're now hoping for even more to be thankful for on Thursday's upcoming holiday. XOXO
Monday, November 21, 7:30pm
(74+ hours since birth)
I was discharged from the hospital yesterday afternoon and we were able to come home for a few hours to spend time with Ava. Her energy was absolutely wonderful and exactly what we needed to keep a positive, balanced perspective. Darrin and I returned in the early evening and stayed until 7pm when the nurses change shift for the evening. Although it was heartbreaking to come home without baby for the first time, I have to admit, the comforts of home were welcoming. The smell of a nice wood burning fire mixed with a pot roast in the oven, a long hot shower and my own pillows in my own bed felt good and necessary.
We returned early in the morning around 5:30am and were pleased to learn that nothing had changed since we left him the evening prior. Although I often find it difficult to accept "no news is good news" it is simply where we are at this point.
The nurse that cared for Evan overnight was an absolute angel. She was kind, caring and extremely compassionate. She shared that she spent several hours sitting beside him holding his little hand. She was so pleased to see him responding and squeezing back. It provided great comfort for me to know he was in such good hands (literally) while we were off-site. She just kept saying how cute he was ... and how big and healthy he looked. She told me with a smile, "he's the biggest baby we've had in this house for quite some time."
We had to step out for the nurses morning changeover at 7am and enjoyed some lovely homemade cinnamon rolls that a friend left for us in the NICU fridge. When we came back a half hour later the little bub had both eyes wide open! It even looked like he smiled at us for a brief moment. That was the first time we had seen him so alert and the first time we'd seen him fully open his eyes. It didn't last long but our spirits were lifted in a very special way.
A couple hours later we were able to meet with his new team of doctors who have taken over from the weekend crew and sat beside him for his EEG brainwave scan. The results of this test will be compared to the MRI to provide us a more detailed picture of Evan's thoughts and dreams.
I am pleased to share that the milk man came with a special delivery for Evan today. I am having success pumping and will be saving every drop for when our little man is able to feed, hopefully in the coming days.
In about a half hour the cooling protocol will be ended and his body will slowly be raised back to a normal resting temperature. He will also be taken off the morphine drip and given a chance to start breathing without assistance. Needless to say, I can't wait to touch his warm little body and see him start to acting like a normal baby. We're planning to spend the entire day with him tomorrow as he wakes up to start experiencing the outside world on his own for the first time. It will be a big day for us all and we remain ever so hopeful it goes well. Keep those good vibes coming!
Birth Story
I woke up around 5am on Friday morning to snow on the ground and some decent sized pressure waves in my belly. The "warm up" action slowly increased over the next three hours and my bag of waters broke at home around 8am. Shortly thereafter things picked up rapidly and we headed to BC Women's Hospital at 10am with one minute contractions, coming every three minutes. We were checked in at 4cm dilated. I had an all natural, drug free labour that progressed steadily for the next five hours. By 3:45pm I was ready to start pushing and about one hour later, Evan emerged.
Although there was no indication that anything was wrong with baby throughout the entire labour process, it appears he suffered what they call an "insult" at some point in the later stages of delivery. He arrived into the world limp and unable to breath on his own. It is believed he suffered a lack of oxygen during the birthing process, commonly known as perinatal asphyxia. His brain activity was muted and he was suffering small seizures just moments after being born. There was also meconium in the fluid that appeared just before he was born (a sign that he was likely stressed) and he may have inhaled some of it into his lungs, possibly further challenging his respiratory system.
It was a very long two hours before anyone came to talk to us. The team was working hard to stablize him and learn all that they could about his condition. We were finally allowed to go and meet our little man around 8pm.
He made a great effort to open his eyes at the sound of our voices and wrapped his little hand around my finger. It was absolutely precious and heartbreaking at the same time. I just wanted to pick him up and cuddle him. All things considered, he looked pink, healthy and simply adorable. As part of a new protocol for this type of situation, his body is being cooled to protect his brain for 72 hours. He is basically wraped in a magic blanket that keeps his core tempature at a steady 33.5 degrees C.
Over the past 24 hours his condition has continued to improve. He is breathing on his own with most other signs are pointing toward normal. They have plans to do both a EEG and a MRI over the next few days to help them learn more. Please keep your healthy, healing thoughts coming.
Updates:
Sunday, November 20, 9:30am
(40 hours since birth)
Unfortunately we've had a few setbacks over the past 12 hours. As Evan's condition looked to be improving he was taken off the respirator and off anti-seizure medication. During the night he suffered more seizure activity which caused him to stop breathing on several occasions. They have put him back on medicine to help prevent this from happening and he has been put on a CPAP breathing device to ensure he is getting good oxygen intake.
Although this news is discouraging we are doing our best to remain hopeful and patient. The doctors have told us that seizure activity like this is not uncommon for babies in this situation, especially within the 24 to 48 hour window after birth.
We have also been told that they won't know more about what's really happening (or has happened) until after a series of testing is completed in the coming days. At the moment, these tests are being scheduled for Tuesday morning.
The past few days you've done a wonderful job warming me up for your grand entrance. I've been waking up with contractions that seem to come strong for a few hours and then quickly fade. Although we're looking forward to meeting you here in the outside world, please feel free to continue taking your own sweet time with the journey. I remain hopeful that you and I can do this without the help of any surgeons.
While we wait for your arrival, your dad and I are thankful for the support of Grandma and Grandpa Eden who have come from Malabar, Florida to be with us for your birth. Tonight, the two of us enjoyed a lovely dinner out at Bishop's restaurant here in Vancouver, BC. It was truly special and very delciious ... but I don't have to tell you that. Sleep tight baby boy.
I am 39 weeks pregnant today and you have been very busy preparing for your journey to the outside world. You've been dancing in my belly for months now but the last couple of weeks you seem to have stepped things up a notch, or two. Wow kid! You've got some moves. I have to say you are three times as active as your sister was at this point. I must say this makes me both very excited ... and very nervous. I saw the midwife yesterday and she was encouraged by your efforts. Keep it up little buddy. We simply cannot wait ot meet you in the coming hours ... days ... or weeks.
For now, I am trying my best to enjoy this beautiful final phase before you're here with us. At the moment you seem to be demanding that I eat as much tapioca pudding and all things coconut as I can get my hands on. So much so that I'm on a mission to find my mom's homemade recipe as the store bought versions simply aren't cutting it any longer. Looks like you may have inherited your parent's taste for "delcious" already.