Baby Phillips

Photos via Sabrina Leone.

Dorothy June joined us on April 13th, and we are over the moon. She is the most precious gift and so much more. As mentioned in my previous post, “Dottie” was born with Spina Bifida (myelomeningocele) and had a bit of an unusual first few weeks. Following our scheduled c-section, she was taken to Dallas Children’s Medical Center, where her myelomeningocele opening was repaired. She then spent 12 days in the NICU where she recovered and was discharged once she could lie on her back. Dottie was an absolute rockstar, handled surgery very well, and won over the hearts of everyone in the NICU. On a personal note, nothing makes you jump out of bed and forget you had surgery faster than knowing your baby is across town having her own surgery.

Hydrocephalus was a top concern post her myelomeningocele repair because at birth her ventricles were borderline normal to enlarged. When the opening is repaired, it causes pressure on the spinal cord and increases the amount of spinal fluid in the ventricles. Her neurosurgeon diligently monitored this with frequent MRIs to ensure that she did not develop any symptoms of hydrocephalus. At five weeks he determined that a shunt would be necessary and at seven weeks she went into surgery. She had a ventriculoperitoneal (VP) shunt placed, which will route excess spinal fluid from the ventricles to her abdomen, where it can be reabsorbed into her bloodstream. Once again, she handled surgery like a rockstar, did not require any ICU care, and only spent one night at the hospital under supervision. We will continue to monitor her shunt throughout her life, and based on her neurosurgeon’s track record, we are hopeful to avoid replacing or repairing it in the future. The shunt will not limit or hinder her in any way, and she will be able to participate in all aspects of life at the same level as anyone without a shunt.

Our life has been like anyone else’s with a newborn, just with a few extra doctor’s appointments and insurance claims. If you did not know she had Spina Bifida, you would never be able to tell. She eats, sleeps, cries, dirties diapers, and moves like any other baby. Her personality shines through her post-breakfast “chats”, learning to stick her tongue out at dad, playing at bath time, and discovering new things each day. We will continue to work with an amazing team of doctors at Scottish Rite and Dallas Children’s Medical Center to monitor and address potential concerns as she grows. We are thankful for the means and access to an incredible team of doctors, which we realize is a privilege many do not have. We are also incredibly grateful to be surrounded by the best friends and family who have provided endless love, support, and prayers. xoxo