+ JMJ +
Dear family and friends,
As Anastasia begins her fifth day bringing smiles to our faces and hearts, we figured now is a good time to send an update. One thing that wasn’t mentioned in the last email, because we had no idea how serious or long-lasting it would be, is that she was having seizures on Monday morning, had been put on anti-seizure medication and had an EEG with about 20 electrical monitor leads attached to her head so the neurology team could monitor brain activity for seizures. After giving her medication she stabilized and over the next 24 hours only one very minor, electronically-observed, seizure happened (which had no outwardly visible manifestations). Having improved so much, the neurology team decided there was no need for the myriad sensors connected all over her head and those were removed yesterday — much to the joy of mommy who got to hold and snuggle with Anastasia again! Daddy also got to snuggle skin-to-skin with her for a while and a few visitors stopped by and got to hold her as well.
It’s always interesting to see just how early the personality of a baby makes itself known. Two years ago we were in the Children’s Mercy NICU (neonatal intensive care unit) with Stephen who bested all of the optimistic estimates for how quickly he would progress; from needing breathing assistance to breathing on his own, from needing a feeding tube to nursing without help. His theme seemed to be “You think it’s going to take me two days to improve? Hold my bottle…” and he’s continued to be both stubborn and physically resilient as he’s grown these past two years. With Anastasia it seems her forte is going to be stumping the experts. Her initial riddle to medical staff: “I was born with breathing trouble, have a cleft palate, and microcephaly; what’s the diagnosis?” While the doctors try to avoid terms like “absolute certainty” until tests came back, the consensus was one of the Trisomy markers. “Nope! Guess again!” said Anastasia between cooing and squeaking breaths. Every one of our daughters have some version of “Mary” in their name and we’ve applied one of the titles of Our Lady as their patronal reference; for Margaret Mary it’s “Immaculate Heart of Mary”, for Francesca it’s “Our Lady of Sorrows” (because she was born during Holy Week), and for Anastasia, because she was born during the week in which we contemplate the Paschal Mystery, we chose “Mystical Rose.” Mystical indeed… in the short time she’s been with us she’s brought a small measure of humility to the team of experts caring for her as they are continually stumped by her medical status. At the moment we have no idea when we might have clarity or definition with regard to a formal, accurate diagnosis… several tests have results pending and it could be a couple weeks before the results are in. From the neck down she is strong, healthy, and almost completely normal; the mystery is between her ears and behind her eyes. And speaking of eyes: it is such a huge consolation to us that she’s both Baptized and Confirmed and ready to be called to her Eternal Home. When I close my eyes I expect to open them to see light emanating from her and filling the room with brilliance in the same way she is filling her mother and me with a capacity for love that I didn’t know I had previously.
Later today Anastasia’s siblings will get to see her in-the-flesh for the first time! They’ve seen photos and videos aplenty but are eager to see their new sister for real. While they cannot come into the NICU to see her, it is possible to move Anastasia to the hospital’s chapel where visitors can see her without presenting a risk to the other babies in the medically sterilized and controlled NICU. There will also be a professional photographer who works with the hospital to capture images and memories in cases like this — free of charge! — so we should have some better-than-iPhone photos to share in the coming days.
I would be remiss if I didn’t thank everyone for the generous out-pouring of prayers, food, and babysitting assistance — as well as my boss and her boss (grand boss?) who told me to take care of my family and don’t worry about the office… it will be there to return to later. Given that we don’t know how long we have with Anastasia we are trying to take advantage of every moment to be with her and witness the amazing miracle of life in ways we’ve not seen or contemplated before. Thank you to EVERYONE who is helping to make that possible for us! You are all in our prayers and we owe you all a debt of gratitude that we know we can never repay; the best we can do is humbly implore God to repay you from His infinite treasury!
With gratitude, humility, and love,
Anastasia’s daddy and mommy
And the best part: photos!
Never too young or too hospitalized for a cute, new outfit!
Mom was very happy when neurology approved her holding Anastasia even while being wired up
Daddy getting to hold his little princess (after neurology removed the brain sensors)
Already trying to catch up with her siblings, working on learning her letters… which is tiring work and requires stopping for a nap.
