My Daniel “Tiger” TTTS Survivor

My boys were fighters from their first ultrasound. It doesn’t surprise me at all to hear the nurses say Daniel is so strong, that he fights (often the NG tube which loses several time per day), and that he behaves like a much older baby. If we had only gotten to them sooner, I’m sure Joshua would be right there beside Daniel giving the nurses a double dose of Switzer grit.

The end of our NICU stay is finally within striking distance

At 47 days old and adjusted gestational age of 37w3d, Daniel has come a long way since his entry into our world at 30 weeks 5 days. He’s completed almost all of the NICU phases as he’s achieved developmental milestones, indicating he’s on the glidepath to coming home on or before his due date of June 20th.

Daniel is officially off all IVs and tubes, is learning to feed at breast and bottle, and is gaining weight like the champion he is. At 6 lbs 3 ounces, he’s well on his way to doubling his birthweight of 3lbs 8 ounces which bespeaks how good of an eater he is. Premature babies at 37-38 weeks old are not equal to a full-term 38 week old babies. Preemie development happens outside the womb more slowly and with maximum effort, while burning extra energy and calories keeping warm, breathing, etc. The earlier a baby is born, the longer he or she needs to develop key skills like feeding and breathing. Daniel is still having typical preemie events that indicate he needs more time to develop. For example, he has apnea events where his body just “forgets to breathe”, lowering his oxygen saturation which triggers alarms so his nurses (or mom if in his room) come and stimulate him to breathe. Preemies develop or grow out of these events once their respiratory and neurology matures.  Soon these premature issues will simply disappear. Until then, he remains under the watchful eyes and monitoring of the NICU.

We’re so Grateful for Your Kindness and Support

I cannot possibly convey our gratitude for the meals dropped off, sent to us in services and GrubHub gifts that have kept us, especially our 3 .5 year old Sam, fed as we navigate our grief along with Mark working full-time and me commuting 100 miles per day to put in a ‘workday’ of care for Daniel. We are so moved by thoughtfulness of friends and family who’ve sent care packages, cards, and love. Thank you for your unique support of us while we try to find our way in celebrating Daniel while honoring Joshua. 

Navigating the Awkwardness of Tragedy

A special ‘thank you’ to the people who are loving me right where I am, not asking me to move on, not saying inane crap to me, who have the courage to reach out despite the horror of what’s happened – people who have said, “I don’t know what to say but I’m here.” Thank you for not insisting I be someone I no longer am in order to keep your friendship. Some things in life are truly tragic and can never truly be fixed or even better, they can only be carried. Thank you to those of you who are trying to help carry, despite the awkwardness.

Thank you for the texts I sometimes forget to answer. Thank you for the small gifts, care packages that include a gift for Sam keeping his world bright, and meals that kept him fed those first agonizing weeks. Thank you for continuing to check-in and not expecting us to comfort you, not expecting us to soothe your discomfort of your exposure to our tragedy. Thank you for allowing us our grief without shutting us out, multiplying our pain. Thank you for the honest hugs and shared tears. Thank You.