Friday, June 24, 2011

Another TTTS Angel

I got word yesterday morning that two TTTS survivor and angels were born as another TTTS survivor died. I did not really know the mother of the survivor who lost her fight with TTTS, she was a member of my support group. She had lost one of girls in utero and gave birth to her survivor 6 weeks ago, at 28 weeks gestation (one week more than my boys). Her little fighter survived heart surgery, breathing problems, collapsed lung and finally pneumonia ended her life. She never left the NICU. My heart breaks for her family in dealing with the death of both of their babies. Blessings out to all of them.

Nolan had another follow up appt with the surgeon who did his skull surgery. As always, Dr S was thrilled with how Nolan's skull has shaped up but more importantly, he is a doctor of neurology and so when he mentions how impressed and amazed with how Nolan is developing it makes me happy. Of course I know that he has his brother to support him, help him and love him from the other side. Nolan is just over the 50% mark in growth for babies who really are 9 months old. He is off the charts for a baby born at 6 months (his adjusted age). Dr S just laughed and smiled with Nolan and said how wonderful it was to see such a healthy happy baby. Since Nolan is on state insurance he has to go to CRS to see Dr S. CRS stands for Children's Rehabilitative Services. It is a clinic set up to see children who are facing very serious health challenges. Doctors from around the city come in to see their state insurance patients. It definitely is not like a pediatrician's office where the majority of the babies are healthy. CRS is a clinic for very sick children. Whenever I see a child with health challenges I try to catch their eye to connect with them. I see the light that they truly are and somehow I want them to know that I see them, the real them, not just the body they are in.

I just wanted to mention that I did not join the mama and me yoga class. As it worked out Nolan had a doctor's appt at the exact time of the yoga class for the past three weeks. There is another option out there, I know it.

For those of you who do not know. I am 11 days into my 30 Day Muchness Challenge. A lot of my daily experiences are being posted there. Please check it out. :)

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