Take a Moment

Tonight I am taking a long moment to reflect on life and what is important. And I'm finding a real struggle on where to begin and how to express what is on my mind.

Life is special and its precious. We know this and we say this. But often times we take this notion for granted.

As an SLP, I spent years learning about a variety of disorders and delays that a person could experience in a lifetime. There are minor issues such as articulation disorders that develop during childhood and there are major issues, neurological diseases, that a person may be born with or could develop later on in life. The number of issues that could go wrong in life are immeasurable. And I remember thinking on several occasions, It's amazing anyone turns out okay. That any single person can develop and not have a single or major health issue, is truly a miracle.

And then again, these thoughts came about during my pregnancy.  You know of this little life growing inside of you and you spend endless hours daydreaming about what life will be like once they enter the world. What will their hobbies be, what will their personality be like, what will they become when they grow up? And people always ask: do you want a boy or a girl?  And you know the politically correct response is: I don't care what I have, just as long as it's healthy. But deep down, you know what you're pulling for.  Because deep down, you expect that your baby will be healthy.  And that you can concern yourself with petty things like a baby's gender. Not that it is important, and not that it isn't something to wonder about, or something to hope for.  But in the end, it truly is a mute point.  Especially, if something goes wrong.  Then you really don't care. And all you can focus on is: I just want this baby to be healthy. I'll do anything, just please let this baby be healthy. 

And the reason this weighs so heavily on my mind, for those of you who don't know, is that my sister and brother-in-law are expecting their first child, a daughter, who is due February 17th, but who will likely arrive much sooner because all of those things that we know about and take for granted, is their reality.   

At 28 weeks, they had a follow-up ultrasound to their 20-week anatomy scan where a choroid plexus cyst had been discovered in the baby's brain. These are found to be very common and are of little concern as they generally disappear by term as the brain continues to develop.  And such was the case for my niece. Their follow-up ultrasound revealed that the cyst had resolved itself, but unfortunately, a scan of the heart revealed that it was enlarged. This condition was taken quite seriously and several follow-up appointments ensued. Over the course of several appointments, it was determined that the baby's brain was also impacted. At 30-weeks my sister was admitted to the hospital where we were all under the impression that there would be a baby delivered by weeks end. Lissa was being closely monitored via ultrasound and MRI, where the baby's heart condition was fortunately found to be stable. Lissa was released from the hospital, but continues to be closely monitored as an out-patient on an every-other-day basis.

She is now at 35 weeks. And these five weeks have been emotional, exhausting, and daunting. I say this as a spectator. As a person who cares so very deeply for this family. But these emotions that I experience are only a miniscule fraction of the roller coaster ride that my sister and brother-in-law have been on.

Currently and in brief, this is what we know (all excerpts taken from my sister's blog):
"The baby has a Pial AV fistula on the left side of the brain. This vascular abnormality is causing excessive blood flow which is putting pressure on the heart and causing it to enlarge. This extra blood flow is also staying in the abnormal vessels and not supplying to the brain like it should. This lack of blood flow is therefore causing damage to all of the lobes on the left side of the brain. This is called a Steal Phenomenon. We cannot know the extent of the damage to the brain or what that will mean for her quality of life and functional abilities (Dec 18, 2014).
The damage is extensive throughout the left side of the brain. Therefore, baby girl is very likely to experience motor weaknesses and/or paralysis on the right side of her body. The pediatric neurologist also expects a high likelihood for seizures. He assured them that they will start therapeutic interventions proactively within the first month and that seizures can often be controlled with medicine or surgical intervention. He also expressed tremendous hope in the fact that the right side of her brain looks completely intact and will work to compensate the left side of the brain, if it hasn't already begun to do so already (January 13, 2015).
The Pial Fistula should be relatively easy to repair from a surgical stand-point and could likely be fixed with 1-2 operations only. However, there are several significant risks involved with surgery, and the more time the baby has to develop, the easier the surgery will be to perform (Dec 31, 2014).
She will certainly require surgical intervention on the vascular system at some point, but this intervention will cure her vascular malformation with no risk of occurrence. (Jan 8, 2015).
Additionally, with concerns of the heart, the baby has developed decreased ventricular squeeze, continued enlargement of the right side of the heart, and mild tricuspid valve regurgitation. Which is classified as mild right sided heart failure which is a symptom of the brain issues. (Dec 19, 2014).
On January 16th, the cardiologist determined that the heart had definitely enlarged, and that the right sided heart failure had gone from mild to a definite moderate state and that her tricuspid valve was experiencing increased regurgitation.  Based on these findings, he made it clear that baby girl will no longer be able to stay in utero until 39 weeks as was originally planned. It is much more likely that she will be arriving between 36 and 37 weeks gestation."

The reason I share this information with you is because I am speechless and devastated.  I hear of what she is going through and I am at a total loss for words. I think of what it would be like to experience that with Avett or to have experienced that with him in-utero, and I cannot possibly fathom the severity and spectrum of her emotions.  When this all came to a head, I grieved with her over the loss of her normal pregnancy.  All of those dreams that she had, even those that seem so basic and those that are right at the forefront -- a vaginal delivery, an all-natural birth, a birthing suite, skin-to-skin contact, kangaroo care, breastfeeding -- all stolen from her and replaced with: steroid injections, weekly ultrasounds, appointments with high-risk doctors, support groups, insurance battles, a Cesarian delivery, a NICU, a transfer to another hospital.

I can't even process it all. I know that when you strip it all away, you're left with just thinking: I'm hoping for the best. I don't care how she gets here. But when she gets here, I hope they have the best care plan developed. I hope she continues to be the strongest fighter. I hope that she thrives. I hope that she beats the odds. I hope that she astounds the doctors. I hope that Lissa and Heath can feel calm and peace along with all of their joy and love.

At this point, I don't know if this has made much sense. I'm not sure if you understand the reason for this post. I'm not sure that I have written what it is I intended to. I don't think I've expressed myself well.  So I will spell it out here.

In all of our conversations, these things that I've told you are all of the things that I think about.  And usually my response to her is this: "I'm so sorry." and "I don't know what to say."
And that's the sad, honest truth. I am so sorry that they have to go through this. I am so sorry that these are the concerns that she has to wade through on a daily basis. I am so sorry that I cannot be there to give her a hug. I am so sorry that there is so much unknown.
And I am so sorry that I have no words that can make this go away or to make her feel better.

And she always responds, "I know.  But it's just so helpful to have so much support."

And this is the reason for my post. Please, send Lissa, Heath and baby girl all of the love that you have, especially as they head into this next week, where the potential for early delivery is quite high. This request is the very least that I could do:
Think only positive things and send them all to them.  Blow big kisses. Write them little messages. Let them know that you care, that you're thinking of them, and that they are loved beyond what words can express. Even if you don't know them, let them know that they have supporters around the world.

You can do that by following along on their journey:
http://handmking.blogspot.com/
http://www.caringbridge.org/visit/lissaking

And if you wish, Lissa's co-worker started a fund-me sight to help with off-setting medical expenses:
http://www.gofundme.com/lissaandheath

To Lissa and Heath (my faithful followers),

Your baby girl isn't even here yet but you have stepped whole-heartedly and courageously into the your parenting roles.  You are unbelievably positive and strong. You are pro-active and great advocates. You are smart. You are brave. You are supportive. You are fighters. You are the greatest momma and daddy a little girl could ever hope for.

I am so unbelievably PROUD of you.

We love you to the stars and back a million times.

XOXOXOXOXO