Well, technically I provided Isaac’s first home, and it was a very large one.

When your preterm baby is admitted to the NICU, they tell you to plan on your baby being there until their due date.  Isaac was in the NICU for 15 days.  I was expecting him to be in there longer, so it was great news to be able to take him home when we did.

What the heck is Apert Syndrome?  Apert Syndrome is a clinically distinct condition characterized by craniosynostosis, craniofacial abnormalities, and symmetric syndactyly of the digits.  It occurs about 1 in 65,000-births.  In our case, it was a sporadic genetic mutation.  In other words, the “plates” in the skull fuse too early, restricting brain growth, and can cause increased pressure in the brain as it grows.  Syndactyly means the joining of the fingers and toes.  Sometimes there can be complications with some of the internal organs with Apert Syndrome.  They did several tests on Isaac in the first few days and all of them came back normal.

The main reason for Isaac staying in the NICU was his respiratory distress.  On Saturday, after he was born he was placed under an oxyhood.  His oxygen levels kept needing to be increased, later that day he was placed on a High Flow Nasal Cannula, but did not have improvement.  So, when we went in on Sunday morning, he had been placed on CPAP.

All of our kids have sensitive skin, that is why he has a bit of a red rash all over his body in these pictures.

He still needed more help with his breathing, so Monday morning he was intubated.  They gave him a dose of Curosurf, which is a synthetic surfactant, to help him to breath while his lungs develop more and produce their own surfactant.  Surfactants are normally produced naturally in our lungs.  Surfactants are wetting agents that coat the surface of the air sacs in the lungs, aiding in the air sacs to expand and deflate without sticking together.  However, in Isaac’s case his body was not producing the sufficient amount of surfactants his lungs needed.

Seeing this sweet little boy in the Isolette, and not being able to hold him was heartbreaking.  But if this is what was needed to get him better and able to come home then I was ok with watching him or laying my hands on his back, or head.