Wednesday, March 31, 2010

The next day

Today is the next day in this journey. The day after we know a little bit more. The day that we begin to move on with "normal" life for the time being.

It has been an interesting handful of days since our ultrasound last Thursday. I wrote much here that evening, but haven't been able to bring myself to post it yet. It is a fairly lengthy burst of very raw emotion. Maybe I will be able to hit the publish button on it later this week.

The emotions of the weekend, and especially of that first day were overwhelming in a way I've not experienced before. Randomly bursting into tears, not trusting myself to be able to get through a conversation-about anything-without breaking down, trying to hold it together so as to not freak out my kids who didn't know was tiring.

Though each day since Thursday has lasted an eternity, as each night has come, so has a bit more acceptance, a bit more peace.

By Sunday, though my emotions were still unpredictable, I truly was doing ok. The intensity of everything I had been feeling for the days before seemed to finally be tapering. But I knew making it through church would not be easy. It was not because I was angry with God, not because I didn't want to be there. It was because I knew that my heart would be touched, and I didn't know if I was ready for that. If I was ready to be vulnerable to such tender things.

Church hadn't even started yet, but as we sat, the prelude music began. The first song I heard was "Be Still my Soul". So very fitting. The music continued, and so did the things spoken to my heart. Music has alway played a large part in my life, and I have found much comfort in hymns. I seem to be able to easily remember words to songs, especially to hymns. I have never been more grateful for this than as the prelude music played on Sunday morning and the words to the songs-each so very appropriate for my aching heart-floated through my head.

It was then that I knew that though things wouldn't be ok by the typical definition, that things would be all right. That even though Monday would come, and not bring better news, that it would not be more than I could bear. That I would be strengthened through that next day and will be in all the days ahead.

Our sweet little baby boy does have hydrocephalus. With the measurements taken yesterday it is actually worse than what we thought it was on Thursday. Not necessarily worse than some of the possibilities that were presented, but worse as far as raw numbers. There is no more "it might not have been an accurate measurement", or "maybe baby was in a bad position and they just didn't get the correct angle".
With the measurements yesterday we know that in his current state he sits in the 'moderate to severe' category. The perinatologist we consulted with yesterday was thankfully very direct with everything that we needed to be told, including that it would be unfair of her to instill any false hope in us that this might get better, or that this baby might be ok. Very best case at this point, he will make it to birth, a shunt will be placed, and he will live with moderate developmental delays. But that is the very best case, and not the most likely. We do know that if he lives to and through birth that there will be impairments, possibly on a very serious level. The dr did specifically mention that babies that proceed along the level of fluid retention that our baby is currently at have a very difficult time through the newborn period.

We do not know if by some miracle his ventricle enlargement will stay stagnant or if it will do as expected and increase. If it increases (which is what will most likely happen) we do not know if it will do so at a slow and gentle pace, or it if will increase rapidly and exponentially. Currently the pressure is causing his brain tissue to be compressed against the outer edges of his skull. What this means for his little developing brain we do not know. All of the proper and expected parts of his brain are there, and are developed correctly at this time, but the fluid is already at a level that is affecting the way his brain is sitting, and may be causing the sides of his brain to not sit separate from each other. We can see the division between the right and left brain below and above the fluid, but where the fluid sits in the greatest amount the division between the halves of his brain disappears.

One of the hardest parts of hydrocephalus is that it is not really a definitive diagnosis the way many other things are. As the dr mentioned yesterday, when you have a club foot or a cleft palate, you know what is wrong, and you know what to do to fix it. With hydrocephalus you know what the main problem is, but you don't know how bad it will get, you don't know up front what the cause is, or how it will alter the baby's existing brain structure. The only way to tell is to wait and to watch.

We will have our first follow-up in three weeks to see how much things have changed. Depending on the overall increase in fluid and pressure, the rate of the increase, and how it is affecting his brain tissue, we will decide if the next appointment will be sooner than three additional weeks or if we can safely wait four weeks until we check again. There may be an amnio involved in the coming weeks just to rule out any chromosomal causes, though there were no indications seen through ultrasound that this may be caused by that.

Ironically, every other part of his little body is absolutely perfect.

We are so very grateful for the outpouring of love and support that we have received over the past few days. Though receiving news like this could never be easy, I know that there is a reason that we are experiencing this now. Our family and friends and neighbors, our church family, the very close knit community in which we live; the experiences we have seen friends endure, those who have lost children themselves or live with the challenges of children with special needs... the support network that we have is nothing short of a miracle. So many have offered prayers in our behalf in recent days, for which we will be eternally grateful. We have been lifted up and comforted and blessed by your faith. Thank you.

Though the coming days, months, and hopefully years will not be easy, we are grateful that our Heavenly Father trusts us to bring this sweet little spirit into our family. We know that we will be carried through the hard days, and that he has a plan for us. There will be sadness, there will tears. But we know that there will be joy and comfort and blessings that we cannot imagine at this time.
I have never been more grateful in my life for the things that I know are real, the things that are actually know and not just believe. For a knowledge of the existence of a loving Heavenly Father who knows each of us. For a knowledge that our Savior Jesus Christ lives, and that through him life beyond this earth is possible. For the knowledge that families are eternal, and that despite what happens with this baby, no matter how long or short his life on this earth is, that we will be with him again.
The timing of this all in relation to Easter, and to General Conference is such a comfort-we anxiously await the beautiful spirit of hope and love that will be abundant as we focus on our Savior's life and resurrection at this time.

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