Tough News

Yesterday and today Lucas's status declined. He struggled most of the day with his lungs and getting enough oxygen through his little body. At midnight I got a phone call from the doctor who advised that Lucas is having an unusually difficult response to his PDA (heart ductus) closing. The medicine we hoped would close the ductus began working, but as the ductus closed, this created pressure on the right side of Lucas's heart. The cardiologists arent seeing exactly why the pressure is not being released properly, but is has caused the right side of his heart to be enlarged (according to Brandon's recount from last night) and an xray of his lungs show an excess amount of fluids as the blood becomes backed up. Lucas's lungs are having difficulty inflating because of the pressure. Over night, the doctor had to put Lucas back onto the oscillating ventilator and put him on 100% oxygen. When I spoke with them at 7 AM, he was down to 93%. Ideally, the doctors' goal is to keep oxygen needs below 50%.

Another complication overnight was that his arterial line that the doctors pull blood from for testing his blood oxygen levels failed. They were unsuccessful getting another back in because Lucas is so small and his arteries are reacting poorly to being poked. They decided to stop trying for a while and were looking at re-attempting later today or tomorrow. The main issue with this right now was that the blood gases they pull just from poking him are not as accurate. The doctor said that they can get by for a few days without this line, but will try again. He also said that Lucas is so fragile right now that a moderate event could tip the scales the way we dont want it to go.

Treatment: The NICU staff will continue to adjust Lucas's oxygen to try to get as much in his blood as he needs. They are treating the contracted blood vessels in his lungs with nitric gas torelax them. He is being given Prostaglandin to reverse his PDA treatment (open back up the ductus) to relieve pressure. They're looking at his heart to figure out why the ductus closing caused the problems it did. Eventually they will try to get another arterial line going.

To better understand the odds we are up against, I've put below research findings for Lucas's situation:

NICHD Neonatal Research Network (NRN):
Extremely Preterm Birth Outcome Data

Based on the following characteristics:

Gestational Age (Best Obstetric Estimate in Completed Weeks):	25 weeks
Birth Weight:	456 grams
Sex:	Male
Singleton Birth:	Yes
Antenatal Corticosteroids:	Yes

Estimated outcomes* for infants in the NRN sample are as follows:

Outcomes	Outcomes for All Infants	Outcomes for Mechanically Ventilated Infants
Survival	41%	45%
Survival Without Profound Neurodevelopmental Impairment	26%	28%
Survival Without Moderate to Severe Neurodevelopmental Impairment	13%	14%
Death	59%	55%
Death or Profound Neurodevelopmental Impairment	74%	72%
Death or Moderate to Severe Neurodevelopmental Impairment	87%	86%

* These estimates are based on standardized assessments of outcomes at 18 to 22 months of infants born at NRN centers between 1998 and 2003; infants were 22 to 25 weeks, between 401 and 1,000 grams at birth. Infants not born at a Network center and Infants with a major congenital anomaly were excluded. The first column of estimates is based on findings for all 4,446 infants in the study. The second column of estimates is based only on the 3,702 infants who received intensive care. The rate of a given outcome had intensive care been attempted for all infants is likely to be intermediate between these two estimates. Sonographic estimates of fetal weight may be used in anticipating birth weight, while assessing the minimum and maximum likely birth weight consistent with the potential error of sonographic estimates.

            These data are not intended to be predictive of individual outcomes. Instead, the data provide a range of possible outcomes based on specific characteristics. Researchers conducted their analysis at level III NICUs, specialized facilities offering medical care for newborn infants. The statistics may not apply to infants born at lower level NICU facilities. Please note that these data provide only possible outcomes, and that the estimates apply only at birth. It is also important to note that outcomes change over time and that they differ for a variety of reasons, including NICU features, patient population, obstetric complications and care, and care after discharge home.

            If you choose to use these data to determine possible outcomes, please remember that the information provided is not intended to be the sole basis for care decisions, nor is it intended to be a definitive prediction of outcomes if intensive care is provided. It is important for users to keep in mind that every infant is different, and that factors beyond these standardized assessments may influence infant outcomes.