Eliza update 3/13 8pm

Dear family and friends,

Eliza has a big week ahead of her, and we covet your prayers. First, her dose of phenobarbital (one of two remaining anticonvulsants) will be discontinued as of tonight. The level in her body has been below the therapeutic (effective) level for over a week now, and she's showing no signs of redeveloping seizure activity, so due to the possible side effects (slight sedation, brain development delay), we and the doctors have calculated the risks and decided to see how she does without the drug. The continued abnormality of her brain activity on the EEG does indicate that there is some risk of the recurrence of seizures, but at this point, the costs of using the drug seem to outweighthe possible benefits.

Second, Eliza will have her fourth MRI tomorrow, most likely early in the morning. As it has been a month since the last scan, the doctors want to have another look at her brain; it is easiest to do that while she is still on the respirator, as she will need to be sedated for the scan and therefore runs the risk of breathing difficulties. The drug they will use to sedate her should wear off quickly after the scan, and should not compromise her increasing strength and awareness. All the doctors seem hopeful that the brain will look no worse--and perhaps even better--than it did a month ago. We should know by the end of the day what the doctors have seen.

Thirdly, Eliza is still on track to be extubated (removed from the respirator) again this Wednesday. The neonatologist seems confident that, a) the last attempt failed due to Eliza's lack of energy and strength, and b) she's significantly stronger now due to consistent weight gain over the past week (70 grams just yesterday!). But things will be done a little differently this time. Eliza will be given caffeine, which, as a stimulant, will encourage her to breathe faster and stronger (and don't we all need a little caffeine to get us going now and then?) and will strengthen her diaphragm. She will also be put onC-PAP (continuous positive airway pressure), which is a small two-pronged tube in her nose that provides pressure support like the ventilator does (keeping her lungs from collapsing like last time) but does not provide breaths. We're told that she'll likely hate this (who wants air blown up her nose?), and that some babies are so upset by it that it defeats its own purpose, but they hope to keep it in as long as a week if they can, just to give Eliza the best chance they can to get used to breathing on her own.

Meanwhile, if you're tiring of receiving our emails or of forwarding them on to others, there's now a new way to get our Eliza updates: she has a blog (yikes! aren't we supposed to worry about our daughters having these things?). All of our email updates will be available at http://dixiejax.blogspot.com/ . Please feel free to let us know if you want us to take your name off our email list now that our updates are available elsewhere.

"He will have no fear of bad news; his heart is steadfast, trusting in the Lord." Psalm 112:7.

Love,
us