Ok, now that we have the intro and background squared away, let’s get into the details of Lila’s case.

As I mentioned before, the main cause for concern with Lila was due to the cord being wrapped around her neck during delivery. Her tiny new brain was deprived of oxygen during critical moments in her life, and brain cells are just not able to repair themselves the way other cells in our bodies are. We also found out that Lila’s Apgar scores were initially very low. They started at 2 (at 1 minute), and went up to 6 (5 minutes), then 8 (10 minutes). So while they went up, the initial reading was not ideal at all.

Once at Children’s, Lila was brought to the Neonatal ICU, where she still is today. She has round-the-clock nurse care (each baby in the NICU has their own nurse; the nurses work in 12 hour shifts), and is being closely monitored. I won’t lie, all the tubes, wires, and machines she is hooked up to are scary and intimidating. We just keep reminding ourselves that they’re there to help her get better.

This next part is tough to write, for some reason. We definitely don’t know all of the details and history of Lila’s diagnosis, and haven’t had much time to do any research. I’m sure that will come once we’re back home, and have time to do so.

Lila was diagnosed as having hypoxic ischemic encephalopathy. Basically, this refers to the lack of oxygen her brain was receiving during delivery, and the possible damage it could to do. Lila was considered a good candidate for a semi-new treatment that Children’s offers (I believe they are the only hospital in the state to do so), called Hypothermia Treatment Protocol. This treatment essentially slows a newborn’s metabolism and brain synapses down through cooling, and allows the hospital and doctors to run necessary tests on the baby to try to determine the extent of brain injury the baby may have incurred. The cooling therapy lasts for 72 hours, during which the baby is cooled on a cooling blanket, down to about 91 degrees farenheit. During this time, in Lila’s case, she had two MRIs, to check for any brain swelling, lesions, bleeding, etc. She was also monitored for any possible seizures, a common side effect to HIE.

All of her tests at this point have come back with encouraging news. Her MRIs were both negative, or “normal”, and we met with her neurologist today, who says both of these results are promising. She had no seizures during this time either. While she has not yet had a formal EEG, the brain activity monitor that has been on her has not detected any seizures or irregularities at this time.

Lila is currently being warmed tonight, as she has completed the cooling therapy as of 5pm today (Mon, 3/2/09). She will be warmed a half of a degree every 2 hours; the entire process takes 12 hours. Once she is back at her regular body temp, she will hopefully be having her ventilator removed (YAY). The doctors leave this in during the rewarming as a precaution, as warming can sometimes cause apnea in babies.

So when we get to the hospital tomorrow morning, we should finally be able to see our daughter without a couple of wires, tubes, and this gauze mask thing that smushes her face and keeps her eyes shut most of the time. We just called the hospital and spoke to her nurse for the evening, and she told us Lila is doing great, and is back up to about 95 degrees Farenheit.

After the rewarming is complete, Lila still has a few things to show us, before the hospital will let us take her home (they say perhaps after 7 days, which would be this coming Friday). She will be having a lumbar puncture tomorrow, to rule out any spinal infection, such as meningitis. She will also slowly be introduced to nutrition, as all of this so far has been received via IV. Lila needs to show us and the doctors that she has the reflexes to suck and swallow on her own. She is showing signs of a gag reflex, and we do see her making sucking faces occasionally, so are slightly encouraged. This is probably more difficult for her to do, with the vent in her mouth, so we will likely know more after tomorrow.

So that’s where things stand as of now. I’m sure we’ve left out many things, but I wanted to get as much of this out as possible, in order to send this to everyone as soon as we could. I will definitely keep updating things around here, so please keep checking back with us.

Thank you ALL so much for your emails, phone calls, texts, messages, we love and appreciate you all. We have not yet had time to get back to anyone, and as much as we would love to, we just don’t know when that time will be right now. We aren’t able to use the internet or our cell phones when we are with Lila, so we don’t have much time during the day for keeping in touch or returning messages, and we wish we could. I hope this site will keep you all posted on how we’re doing, and how Lila is improving.

Much Love,
Meg & Jon