Noah Joseph Westervelt's First 6 Days

Noah Joseph Westervelt was born on Wednesday, March 16th. The following is a brief summary of the medical aspects of his first 6 days. We’re posting this since we have been unable to keep people uniformly up to date. We’ll post later about some of the other aspects of his life.

Wednesday: He is born at 9:13 PM and weighs 7 lbs and is 18.5 inches. He scores high on the initial screen (meaning he appears to be healthy); he even passes Meconium (has a stool). He nurses well.

Thursday: He has a good night and continues to nurse well. In the mid-morning we are informed by the neonatologist that he likely has Trisomy 21 (Down Syndrome) and that genetic testing will be needed to confirm. They take blood to and send it to the lab. We are told it will take 1 to 2 weeks to get the results.

Friday: He continues to nurse well. This is encouraging to the doctors as children with Down syndrome can have trouble nursing (due to low muscle tone).

Saturday: He continues to nurse well. They delay discharging him until the afternoon because they notice he is having trouble regulating his temperature. We are discharged at about 4 PM and head home. Saturday night is tough. He begins to become lethargic and his interest in nursing begins to decline. His temperature fluctuates widely, from 96 to 98.2 deg F. It should stay above 98 deg F.

Sunday: His nursing continues to be poor. His temperature stays around 97.2 deg F (still low) but is now more consistent. Sunday night is another rough night. His nursing degrades further.

Monday: After nursing at 7 AM he then vomits green/yellow. We are concerned but not alarmed. We attend our scheduled appointment with his pediatrician at 9 AM. He vomits green/yellow again after we arrive. The pediatrician, as we were, is also concerned but not alarmed. Before leaving the pediatrician we feed him and he immediately vomits green/brown. The pediatrician is alarmed, but recommends we wait to see how things progress and stay in touch via phone. When we arrive home he vomits green/brown several more times. We attempt to call the pediatrician, but they are closed for lunch. Becoming increasingly concerned, we hop in the car to get help. On the way he vomits green/brown/red and we call 911. The ambulance meets us and takes him to Albany Medical Center. They start an IV, begin to warm him, and intubate him (give him a breathing tube). He is severely dehydrated and has a dangerously low temp (93.4 deg F). He is rushed to the Neonatal Intensive Care Unit (NICU) where they determine he likely has some sort of blockage in his gastrointestinal system. They immediately perform surgery to determine the source of the blockage. Time is of the essence because he could go septic (get an infection in the bloodstream) and/or his bowel could die. They finish the surgery around 9 PM. They determine he has Hirschsprung’s disease (essentially, part of his colon can't function because it lacks innervation by nerves). They temporarily remedy the situation by giving him a colonostomy. A second surgery will be required in 2-3 months, when he’s stronger, to reverse the colonostomy and remove the denervated bowel. We also receive notice that preliminary genetic screen indicates that he does indeed have Down syndrome. Further testing will be required to determine which variety he has.

Tuesday (today): He is stabilized. A pediatric cardiologist does an echo-cardiogram and determines his heart is normal. This is a huge relief as many children with Down syndrome have congenital heart disease. The doctors work to stabilize his blood chemistry. We are told he will be in the NICU for several weeks.

He’s a few details of his current status:

• His blood pressure is still low; that’s to be expected because he’s still dehydrated
• He is on a morphine pump for pain
• His lungs: They are sucking a lot of bloody excretions from his lungs. They need to determine the cause. It could have been caused by aspiration, or there could be another problem
• The doctor’s summary statement: “he is stable, but still a lot of issues they’re working on”
• Our summary statement: “We rejoice that God allowed Noah to live! We are thankful that the doctors were able to quickly and decisively determine the cause of his medical issues.”

Betsy and I are still working on our game plan. Whether we stay at the hospital or at home depends on the day’s developments. We’ll let you know more when we do. We’re grateful for the prayer support, offers of help, and concern. We feel overwhelmed by the love of our family and friends. As one of the physicians reminded us this morning, “this is not a sprint, but a marathon.”

Photo is of Noah this morning.