Day 30: A very difficult day.

I'm going to preface today's update by saying that we got some pretty bad news today. If you're having a good day, stop reading now.

I wish more than ever I could post some great post about her one month birthday, but that's not possible. Sara and I didn't want to post this update. In a way, writing about it makes it more real. We were going to take a few days to come to terms with the information. But we need to come to terms with it now, because it is very, very real.  It is very difficult to write about the news that we received today, but Lily needs as many prayers and as much positive energy as possible right now, so here goes nothing.

I went to the NICU after work. Asked the nurse how Lily's 30-day brain scan turned out. She wouldn't say anything - asked me to wait for the doctor. Knew it was bad news. While the scan didn't show signs of brain bleeds (thank God), it did show evidence of something called PVL, or periventricular leukomalacia. PVL, which studies say occurs in anywhere from 3-10% of premature infants (the more premature, the more common) is a type of brain damage that can range from regressive, to mild, to moderate, to severe. The presence of cysts, or brain bleeds, makes matters materially worse. Although babies with PVL generally have no outward signs or symptoms of the disorder, they are at elevated risk for motor disorder, delayed mental development, coordination problems, vision/hearing impairments, cerebral palsy, epilepsy, or mental retardation.

The cause of PVL is yet undetermined, but babies born with sepsis, which Lily was, have been shown to be at elevated risk. There is no treatment for PVL other than "symptomatic and supportive" treatment, meaning physical therapy, motor development reinforcement, etc. etc. etc. - so, we wait and see. The doctor made it sound like it very, very few cases the PVL will "regress" - but it never goes away completely. 

We don't know the severity of Lily's PVL right now; we are going in to talk with her doctors during rounds in the morning. They will probably order an MRI to determine the extent of it. They said there is no relation between the PVL and lily's lung issues and oxygenation issues. They are completely separate. 

It goes without saying that today has been a very difficult day. Don't see much in the way of sleep tonight. Sara and I are both feeling pretty nauseous. The sheer improbability of first the 1% likelihood of a chronic placental abruption, and then the 4-10% rate of PVL is pretty shattering. Not only do Sara and I know what it's like to be hit by a freight train a couple of times, we're now know what it's like to have your heart torn out. We are trying to stay strong, and are trying to stay positive. We have no choice.  This is the hand we have been dealt, and if we have been chosen to be parents to a disabled child, then by God - so be it. We're going to be the best parents we can be, regardless of what happens.

This is a good time to list a few positives:
1. Lily is still digesting well. She's on 7ml/hr, and is tolerating it quite well. She put on 40 grams last night, and now weight 2lbs 7oz, just shy of 2.5lbs.
2. Although she is still desat'ing after her sixth and seventh blood transfusion, she pulls out of them. She only had 1 bradycardia today, as opposed to 2/3 a day prior to the transfusion.
3. We know she can hear - she is responsive to sound.
4. We know she can feel - she is responsive to touch
5. No signs of brain bleeds on the brain scan.
6. Though the brain scan is only a rough indicator, it looks like she has PVL in the left ventricle, not both.
7. After her seventh blood transfusion, this morning, her hematocrit levels stabilized at 37%.

So, tonight, today, tomorrow, forever into the future we are praying for a regressive, or at least a very very mild, case of PVL in her left brain ventricle, and we are praying that whatever it turns out to be, Lily can lead a normal life. That she can run, swim, and do gymnastics. That she can laugh, and play on a playground. That she can go to school, college, fall in love, get married, and have children. That's all we're asking for right now.

Well, we're asking for one more thing. Sara and I are asking again for everyone's continued prayers and positive energy sent Lily's way - overdrive prayers, and overdrive positive energy. I hate that I have to keep saying this, but Lily really needs them now more than ever before. Thank you everyone for your support, your prayers, your good energy... thank you.