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.
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…
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
For our littlest angel, Sage,
may he continue to surf
his miraculous story
one precious moment,
one tiny curl
at a time.
And with our hearts lifted up, mighty One,
We thank you,Thank You, for the miracles that
like a sacred river through our lives.
May we drink daily from that eternal spring.
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.
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!