A Test(ament) of Hope / uncomfortably numb

  

First off, the good news - Lily is still developing wonderfully, she is meeting all of her milestones! She is just under 13 pounds, she smiles, she's starting to laugh. She's alert, loves watching the world around her, and is starting to grab and swat at things. She eats like a champ - 6 ounces at a time now! Up from about just a few drops at a time when she started eating - it's amazing how far she has come.  We have so many reasons to continue hoping that her progress will keep up, and that she will continue developing well.

It's been a while since I've updated the blog. It's not because I've turned any corners about keeping everyone up to date or sharing Lily's story. I haven't updated the blog because I associate it with a really traumatic time. It's like surviving a bad car crash and never taking the same stretch of road again. Something like that. In a way, not coming on here and seeing the login page, seeing the "new post" button - not going through the process - has made the NICU stay seem a little more distant.

It's compartmentalization. Sealing off that part of life.  But I'm beginning to see that it hasn't been a good way of dealing with things.   It helped me convince myself that everything was going to be ok, that the whole NICU experience was just a bad memory. We learned some bad news yesterday that really caught us off guard.  There's a chance that not everything will be ok, which I guess we knew all along. It's her brain.

Lily's neurologist diagnosed her with something called benign external hydrocephalus (BEH), sometimes known as 'water on the brain', meaning there is too much craniospinal fluid between the grey matter of her brain and her skull. There are two types of hydrocephalus - internal and the less-severe external. He also saw some potential inflammation towards the front of her ventricles, indicating potential brain damage. The next step is an MRI to determine the extent of things.

More recently, she is also experiencing muscular tightness in her arms, hips, legs, and ankles. At the suggestion of her physical therapist and neonatologist, we're stepping up physical therapy from once every two weeks to twice a week. We stretch her once every two hours - keeping her muscles loose. Tightness is a sign of cerebral palsy, but it's also common in preemies who don't develop CP. So, we are watching out for CP too. We either won't know for a few more years, or we might find out after the MRI. I guess what I'm saying is that the MRI won't be able to definitively tell us if she doesn't have it, but it will be able to definitively tell us if she does have it.

My head is spinning writing this. It's pretty scary stuff. Sara and I are staying really positive and hopeful. We're staying strong, keeping our chins up and we are ready for whatever the future may hold.

Where was I.... there are two types of hydrocephalus. Internal and External, referring to the area of excess fluid on the brain. Lily's is the less severe, external. Benign external hydrocephalus. It could resolve - from what I'm reading, it usually does resolve. The outcome is still uncertain, though. There is a study by the National Institute of Health on the long-term effects of BEH, the sample size was a little small - 99 - but nonetheless:

"Developmental delay was present in 21% of patients (4% verbal, 20% gross motor, 4% fine motor delay)... Gross motor delay resolved in 15/20 and fine motor delay in 4/4 patients. Verbal delay resolved in 2/4 patients, but interestingly, was newly detected in 6 other children. None of the patients required cerebrospinal fluid shunting...

Conclusions: BEH patients in this series generally saw resolution of presenting motor developmental delays; however, new verbal delays were detected in a non-trivial number of patients. Quality of life measurements suggest some reduction in health status, but less so than is seen with shunted (internal) hydrocephalus."

Here's another one:

"Benign external hydrocephalus is a self-limiting absorption deficiency of infancy and early childhood with raised intracranial pressure (ICP) and enlarged subarachnoid spaces. The ventricles usually are not enlarged significantly, and resolution within 1 year is the rule."

I'm not sure what "resolution within 1 year is the rule" means, but it sounds good to me. Benign sounds good to me. Still, it's classified as a birth defect.  A benign birth defect. That's a hell of a balance of words.

We have a tremendous amount of hope, though. BEH can resolve itself.

I'm a risk guy. Not a risk taker. Just a risk guy. It's what I do for a living: analyze risk, quantify risk, decide whether a risk is good or bad. But I don't know what to do with this one. The risks are clear - but I can't process this one. I want to have hope, I want to stay positive and focus on the best possible outcome... but I also want to stay realistic, and understand what a worst-case scenario could be. 

It's Lily I feel bad for. She has had such a fight, at such a young age. Can it never end? At 7 months old, she has undergone more medical procedures and tests than most people have during the first 50 years of their life.

I just want her to run, to learn, to have a normal life. That's all I'm hoping for. That's what I'm praying for. And here are five things I'm thankful for:

1. How far Lily has come - six months ago, we didn't know if we were going to take her home.

2. Her smile, and her happiness - she is a very, very happy baby.

3. Her sight. She can see, and she can track objects visually

4. Her hearing. She can hear, and (sometimes) responds if you call her name

5. The fact that she has hit every milestone - she is not showing delays.

It could be bad, it could resolve. She might be disabled, she might not be. She might walk, she might not. Christ. The uncertainty is pretty tough to bear. But this is the new normal - this is the new life. Our plan of action is to give Lily the best life she can have - we are taking it one day at a time. That's all we can do.

Here's something I wrote before the neurologist appointment:

I choose to live life purely in, and for, the present day. I choose not to worry about possibilities. I choose not to dwell on statistics or worry about yet-unknown test results. I choose to accept that the future holds truly random events, and I choose to accept that "chaos" is not necessarily a bad thing- rather, it is a naturally occurring phenomenon beyond anyone's control. I choose to accept uncertainty, and I choose to be thankful.

I choose to be a pillar of strength for my girls. I choose hope, I choose to believe in the continuity of miracles that I witness every day.

I choose hope.

 Thank you all for the support, thoughts and prayers. This blog has had almost 50,000 views, it's pretty amazing. Knowing that everyone out there is still keeping Lily in their thoughts, prayers, and hopes is amazing. Lily has overcome tremendous odds - she is a fighter. She can beat this!