Where we are

We got some hard news on Tuesday. Aaron had an EEG done to look for brain damage. His results came back 'abnormal'. In his case the abnormal results indicate that he was deprived of oxygen for prolonged periods of time in utero (via abnormal and reverse cord flow). It appears that he also sustained a stroke in utero as his right hemisphere is primarily impacted. Evidence of this is he is already showing signs that the left side of his body is weaker than the right. The extent of the brain damage is unknown. It could be mild cerebral palsy or profound mental retardation. We will pray for the best and prepare for the worst. In a couple of months we will seek counseling for caring for a disabled child and integrating Aaron into our family.

The possibility of severe mental retardation is my greatest fear, as it would severely impact my life as his primary care provider. My initial reactions were pretty selfish and probably normal. Stretching from "How will I go to the gym?" to "I don't want to change his diaper in 30 years". The diagnosis has been a challenge to us. It has brought up some interesting and sometimes ugly (things in me) issues. It raises the question of how much do I value life? Do I respect and love life, God's creation, even if it isn't how I would have designed it? Aaron may never interact with me, even though I take care of him all day. Do I love him less (rhetorical)? God values and loves him regardless. I feel like God is preparing my heart to be his parent. I do however need a lot more work! Please pray that God equips us to be his parents and that we have wisdom while raising two other children. We feel strongly that we should continue to do everything we can medically to ensure his survival (alternatively you can withdrawal "heroic care" provide "comfort care").

As our week continued the news did not get better. Aaron has a staph infection in his blood. Apparently this may have caused a hole in his mitral heart valve. Additionally he is being tested for meningitis. So far the culture for meningitis is negative, but it take 3-5 days to know the results. He is back on many meds to support his life. His doctors do think that he can pull through, albeit it is still an uphill battle.

On the other side of the spectrum is James. He is off of all IVs, off TPN (IV nutrition), on full feeds of breast milk and some formula, and off all vents and forced air contraptions. This is a big praise! He does have a simple nasal cannula to aid his breathing, but nothing that damages the lungs (or face). He has 1-2 episodes of apnea a day, but this is normal for preemies. Today I watched him sleep. He smiled and seemingly giggled as I watched.

Both boys are responding to my touch, praying with them, and singing to them. We still pray for Aaron's complete healing and for James to continue to progress forward. I pray that Aaron does not suffer and experiences peace.

We are so thankful for all of your prayers, meals, rides, e-mails, and thoughts. I know there are hundreds of people praying for our family and our boys. We do have peace and strength that surpasses our understanding. We are definitely sadden by any potentially poor prognoses for Aaron, but we have hope. Even if things do not turn out as we would want them, even though life may be difficult, we have faith that God's strength and Grace will continue to carry us.