Cody and I flew without Liz to LA and then drove down to Laguna Beach. We had a great time. We colored, played hide and go seek, built sand castles, and chased Cats. A real bonding experience. Katy’s wedding was a lot of fun. Katy and Paul ranked everyone at their wedding (1-5) 1- being the most fun and 5- being the least fun. What a great idea!! My ranking was in question.
Cody and Sage have been bonding in Portland.
We skinned from 8:45 to noon on Friday morning. We skied the godfather and finished in a little town where we took a taxi back to Verbier. Great day of skiing on March 9th!!!
The Godfather is the far right peak
Cody and Sage have been really bonding. Anytime Cody gets near Sage, he lights up and immediately smiles. We have been at home for over a month and Liz is back to work. Wow, time is flying by and we feel really lucky to be at home.
Dad - a 5 week beard
2/3/2012
We are finally back in Maine after being discharged from Boston Children’s Hospital on Monday. The neurosurgeon (who is a miracle worker in our opinion) was very pleased with Sage’s follow up ultrasound which showed improved ventricle size and smaller head circumference. Sage is shunt-free for now and doing great!
Over the past couple of days, I have been trying to compose one last email update but have been at a loss for words to express the gratitude we feel for the outpouring of love from all of you. Stew and I have been constantly amazed by the goodness that has emerged from every corner of life and know that Sage has benefited so much from all of your positive thoughts. Being at home with him now in front of our cozy fireplace watching him watching me, I know that we would never have gotten to this blissful place without all of your wonderful energy. He seems to have already grown into his name, being wise beyond his years with two brain surgeries under his belt. We don’t know what lies ahead for him, but because of you all, I believe he has the best chance to be who he was supposed to be and live out his story.
1/25/2012
Prayer from Ashley Jansen
the picture is so beautiful and such an inspiration.
i pray he’s remembering his future: Already healed.
Here’s a blessing of the hands that’s coming through…
Dearest God,
Bless these hands
that they may move
with precision and skill.
That they may be guided
by love and tenderness
and that they may be soaked
in your divine light.
Touch and bless all the hearts
of family and friends – especially
sweet, courageous mom and dad -
may the edges of any worry or fear
be softened and may the heart that
beats in all of us, hold them close
and heal.
For our littlest angel, Sage,
may he continue to surf
his miraculous story
one precious moment,
one tiny curl
of joy,
at a time.
And with our hearts lifted up, mighty One,
We thank you,Thank You, for the miracles that
f
l
o
w
that
f
l
o
w
that
f
l
o
w
like a sacred river through our lives.
May we drink daily from that eternal spring.
1/18/2012
Hello from Boston!
In my last update, Sage was in the process of getting another drain placed in his ventricles to remove pressure off his brain. Unfortunately, the drain failed so we have moved to Boston where the neurosurgeon performs a particular procedure that they don’t do in Maine. Despite the imaging that shows increasing hydrocephalus, Sage still looks incredibly stable. His excellent clinical exam is a shock to all the doctors after they’ve seen his imaging and I know that’s because he’s gaining strength from all if his supporters (and my delicious breastmilk:).
The team here feels comfortable continuing to monitor him rather than jumping into another intervention which feels instinctively the right thing to do. So we are back in a watch and wait mode – flow baby flow!
Additionally, we have a stroke, neurology and hematology teams on board trying to figure out the etiology of the ventricular bleed and the venous clot. Sage has them all perplexed.
The NICU at Boston Children’s has been an eye-opening experience in itself. The babies here are really sick, transferred from outside hospitals all over the country. It’s incredible seeing a tiny newborn with tubes coming out everywhere, hearing their difficult stories and feeling overwhelmed with heartache for the parents. But then you see mom or dad come in and say, “oh she looks fantastic today!” with smiles and bright eyes.
It seems all of what we go through in life is relative in accordance to our expectations. Stew and I have really had moments of happiness throughout this journey and it is so comforting to know that no matter what happens, there is always the possibility of joy.
1/13/2012
A quick update as you all have been so generous with your support and prayers. Sage has looked incredible over these past few days, like his old self. He has been working with physical therapy (if you can imagine a newborn doing exercises:) and Stew and I have become drill sargents with tummy time. We actually thought he might just up and walk out of here, he was making such progress. So we were shocked yesterday when the ultrasound scan showed his ventricle size increasing, necessitating another drain to be placed in his brain to decrease the pressure. He is getting this procedure right now, as Stew and I are pacing in the waiting room.
He’ll have to be on his back again for a few days in the isolette with a feeding tube as they won’t allow my matrix style breastfeeding this time around. So, I stayed up all night holding him and breastfeeding him to front load the love.
We are praying that he remains peaceful, calm, and comfortable over these next few days so the drain works to its full potential and has no complications. A minor setback, we have not lost hope that he will eventually be able to absorb the spinal fluid on his own. In fact, I just got the perfect text from our dear friend (and soccer star from our intramural team) Pete Ingram who reminded us “We have always been a second half team!”
Come on baby Sage! Flow baby Flow!
Sage1_0004 Video
To all of our dearest friends-
When we remember 2011, Stew and I will think of all the overwhelming warmth and love of our friends and family. If this experience has taught us anything, it is that the most important thing – the only thing, really- in life, is the love of friends and family. We have so much gratitude for all of the love that has poured our direction and are in awe at its mysterious extraordinary power to heal. All of you have sent your love in the form of beautiful words, prayers, music, nourishing food, healing symbols, and stories.
While obviously very cautious and far from any long term prognostic indicators, we are encouraged by Sage’s last 2 days. Despite a new blood clot in a vein in his brain that they detected on CT 2 days ago (likely related to dehydration from difficulty regulating fluid balance related to the brain injury), he is actually looking so good to us. An EEG showed that he’s stopped seizing. He’s moving everything, stretching and yawning like a normal newborn. Yesterday, he sucked on a pacifier for the first time and his eyes seem to track. We still can’t hold him or even move his head at all because he has the drain in place, but we find joy in the little things. I am grateful to be a mom again, changing his diapers, soothing him, watching him suck milk from my finger contentedly.
So we are counting our blessings daily and praying that his journey remains peaceful until he heals. Hopefully, the new clot will remain stable and break up without causing damage.The words “thank you” are pale compared to the rich love you all have shared with us. My friend, Christine, shared a quote with us that I’d like to pass on to you all from the Talmud:
“Every blade of grass has its angel that bends over it and whispers, ‘grow.’”
All our love and blessings this 2012,
Liz, Stew, Cody and Sage
Another Prayer from Ash
may you have peace with this mystery
may you have joy for this journey
may courage open creative doors
and lead you to the river to dance
as the sun sets on this day, may your
troubles, worries, and fears fade
as the moon rises
may the power within you bow
and behold
with each star that shines above
my sweet sage hear his life’s song
and may it make him smile.
and may the love you share,
forged in this fire
burn away all illusions
returning you to the center
of your own deepest truth
and the radiant light
which embraces any dark with
a mother’s tender hands
and fierce heart.
On Christmas day, while at home he had a seizure (I didn’t know it at the time- it was terrifying). We called 911 and went to the hospital where he was found to be having a massive brain hemorrhage. The next 18 hours were the worst of our life, not knowing if Sage would pull through. He was rushed to neurosurgery and had a drain placed in his brain to remove some of the pressure. We got good news after the MRI yesterday that showed the bleed was big but mostly confined to the ventricles (essentially where CSF drains from the brain. We have a really long road ahead of us- he spiked a fever last night and had to have a spinal tap and go on all sorts of antibiotics. We are hoping to keep him healthy and comfortable while his brain heals and would so appreciate your positive thoughts in that direction. He is such a strong little guy and no matter what happens I know he feels the overwhelming love of his parents every moment, hopefully making his difficult journey a little easier.
Check out cody sing Happy Birthday
Sage is doing well. Sleeping, eating, and Pooping!!! Liz has been amazing. We are tired but manage to get about 5-6hours a night. We are spending Christmas in Portland!!
Liz - 2 minutes after the arrival of Sage
Arrived on Saturday Night at 7:16 on December 17th 2011. Everyone is doing well. We are back at home and enjoying the excitement of a newborn. Our first night home was a good night. We enjoyed the help of Super Granny’s. Liz has been absolutely amazing and she was a total Rockstar during delivery. Liz delivered in about 10 minutes. we barely made it to the hospital. she delivered Sage “o-natural”. Witnessing the birth of Sage made my love for liz even stronger. I feel so lucky. We are pretty exhausted but in a good way. 
