The tapestry of the life of a medically complex family

Archive for the ‘Momma making’ Category

Twins

In early March  2006, Trachgirl & Trachboy were born at 27 weeks gestation. Trachboy was born not breathing and without a heartbeat- he was immediately moved to a resuscitation room. Both were intubated and moved to the NICU. Trachgirl weighed just over 800 grams (1pound 12 ounces) and Trachboy weighed just 1000 grams (2.2 pounds). Both children tested positive for cocaine, as did their biological mother. They were immediately taken into custody by state social services.

Over the next 3 months, Trachgirl & Trachboy struggled for their lives as they were fed through nGtubes and hooked up to monitors and ventilators. Trachboy was trached first and was able to go home to a foster home in late June 2006.

Trachgirl was not trached right away. She regularly pulled out her breathing and feeding tubes and it took a lot of supervision to keep her safe. After her time in the NICU, she was moved to a pediatric rehab hospital and her level of airway obstruction was checked. The ENT doing the procedure found an almost completely blocked airway and placed a trach for her as well. After many weeks, Trachgirl was able to go to the same foster home as Trachboy- they were together again.

Both kids were fed through NGtubes, had significant respiratory issues and had many other challenges to overcome. They were legally free soon after going to their foster home and waited in foster care to find their family. Over the first year, they suffered setbacks and hospitalizations but kept up their fight to live and thrive. I saw their cherubic faces, with trach tubes nestled under their chins, on a state photolisting page, and foolishly (& thankfully) thought “these are my children!”. I found out that the state agencies agreed with me and met them just after their first birthday.

Trachgirl was the shy one, leery of new people, remembering the hospitals, the doctors, the people who come in and out of her life; she kept a safe distance during our first meeting. She warmed up later in the visit and played peek-a-boo in my arms on their nursery floor. Trachboy, less aware of a reason to be fearful, lay in my arms, looked up into my face and cemented their places in my heart. As he nestled into me, nuzzling my arm and falling asleep, I knew there was no hope of turning away or turning back- I had found them. We had found each other.

My eldest

It began in a way unplanned, unexpected. 17 years ago I became a ‘Mom’. His arrival was delayed- a preview of his reticence to join something new that has continued throughout. He protested his arrival, forcing the use of strong medications and other “encouragement”. When he arrived he surveyed the 15 medical personnel wondering “what the heck are they worried about”? After an 80 point heart rate drop that lasted his final 11 minutes of incubation, he literally looked around and relished the chaos he had been able to cause.

He grew as a wonder- bright, inquisitive and ever tall for his age. A quiet, only-child who excelled through elementary school. A teen who went through the usual lax response to the requirements of his high school coursework, rarely turning in neat and orderly homework, occasionally not turning it in at all…  Yet, in 3 weeks, he heads to N. University, seemingly ready, planning to work hard to get the co-op work he wants when that part of his program begins next spring.

What I want to tell you about him is that he is amazing, he is caring, he is the best work I have EVER done. I marvel at him and hope I can do nearly as well with my other 3 – when he isn’t currently deserving to be killed because, after all, he IS a teen-ager! When he is “on the amazing channel”, I see a caring young man who plays with 3 siblings who joined him here only a short time ago. Siblings who usurped his reign on the “only child” throne. A brother and 2 sisters, years his junior, whose lives are complicated, time-consuming, receive his love and attention daily. He accepts them as I do: full-fledged family members who share our hearts but not our biology. It is acceptance beyond his years, beyond what others and older relations are capable. He checks in when he’s away, reads stories and provides good night hugs. I see him and know I have done my job; soon this man-child will enter the world an adult who contributes to the world, caring for others, defending those less capable or fortunate. I love the view I have of his story unfolding.