NICU Days 37 and 38

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NICU Day 37

Lazy Sunday in the NICU. Not much happened today besides hanging out with James. We’re still waiting on the pH probe results. I guess they haven’t been read yet. Hopefully tomorrow.

 

Sleeping in Daddy’s Arms

 

NICU Day 38

James is up to 80 ml of breastmilk.

An ENT came by to see James. He listened to his chest and heard some congestion. He then fished a scope down his nose to look at his nose and throat. Everything structurally is good. He was a bit concerned that James did not cry during the procedure, though. We think this has something to do with his neurological impairments. We’re not really sure if he feels discomfort or pain or if he knows how to process it or vocalize it.

One of the NICU nurses drew up some blood for the microarray test and the DNA test that genetics want to run. I thought they had done the microarray test weeks ago, but maybe they didn’t. This test is being done to see if James has a medical condition caused by any of the following:

  • a small missing piece of chromosome (deletion)
  • a small extra piece of chromosome (duplication)
  • the entire chromosome pair being passed down from one parent
  • large parts of multiple chromosomes being the same

The DNA test is being done to specifically look to see if James has Aicardi-Goutieres syndrome. The following was taken from the National Institute of Neurological Disorders and Stroke: “Aicardi-Goutieres syndrome (AGS) is an inherited encephalopathy that affects newborn infants and usually results in severe mental and physical handicap. There are two forms of the syndrome: an early-onset form that is severe, and a late-onset form that has less impact upon neurological function. The early-onset form affects about 20 percent of all babies who have AGS. These infants are born with neurological and liver abnormalities, such as enlargement of the liver and spleen and elevated liver enzymes. Their jittery behavior and poor feeding ability mimic congenital viral infection. AGS is difficult to diagnose since many of the symptoms are similar to those of other disorders. Diagnosis is made based on the clinical symptoms of the disease, as well as characteristic brain abnormalities that can be seen in an MRI brain scan. Most cases of AGS are inherited in an autosomal recessive manner, which means that both parents of a child with AGS must carry a single copy of the defective gene responsible for the disease. Parents do not have any symptoms of disease, but with every child they have together, there is a one in four chance that the baby will receive two copies of the defective gene and inherit AGS.”

The pH probe results were finally read and show that James has 11% reflux. Average or normal is between 5- and 7%. Stacy will setup a meeting with GI and surgeon to discuss G-tube and fundoplication surgery.