Tuesday, March 30, 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 anything....it 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 important....to 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.



Jen said...

((((((((((Hugs))))))))) I don't know why trials like this is given to us, but I do know that Heavenly Father loves you and will support you through it. Love you girl! Hang in there.

~LL~ said...

Oh, Catey... you are just a beautiful person inside and out. I have been praying for you since I found out you were preggers.... did I know? No, of course not. You, my friend, have been on my heart. I will continue to pray for you and your family. Call if you ever need to talk. All my love - ~LL~

Aaron said...

I love you.

Ashley said...

I am so grateful to have you as a friend - you are such an amazing and wonderful person!
Lots of love to you and your family from across the street. :)

Rheanna said...

I can't even begin to imagine how you are feeling right now, but know that I love you! You are one extraordinary woman with an amazing strength! You're a great example to me and I have always felt so blessed to be your friend! I've never thought that anyone really listens to prelude-or can even hear it for that matter-music can be so powerful! We're praying for you!

Denise said...

Oh, Catey, we are praying for you and your family. We will call you when we return home. Love to you all!

Kelsey said...

love you guys and that sweet little perfect babers! He's lucky to have an amazing momma.

Tiffany said...

Thanks for your testimony and thoughts. Our prayers will be with you!

From all the little Hunt's in Huntville said...

Catey, we are so lucky to know you. Thank you for sharing your faith and courage with us. You are a strong person and Heavenly Father knows it. You will be in our prayers.

Celeste said...

What can I say...we love you Catey! And as everyone else, we'll be praying for you. Thank you for your amazing example!

The Balls said...

Oh Catey! I just heard the news and I want to tell you how sorry we are! Please let us know if we can help in any way, even if you just need some friends to bring you a slice of PF Changs Choc Cake! :) We love you guys and admire your strength more than you will ever know!

Heidi B C said...

Our prayers are with you and your amazing family. You are such a strong and wonderful woman and I admire your faith and strength so much. We love you!

Deedles said...

Catey thank you for your amazing testimony. How wonderful that we have the gospel so that when we go through trials and hard times we have comfort because we know that our Heavenly Father loves us and has a plan for us and has given us His son to help us through these hard times. Thank you for sharing your thoughts. You are an amazing, strong person. May you be comforted at this time and know that my thoughts and my prayers are with you and your family.

Lisa said...

Praying for peace and strength to carry you through and for the best possible outcome for this sweet baby boy. I admire your strength and love.

Malinda said...

Oh Catey, I can only imagine what you must be going through. My heart and prayers go out to you. God only gives such precoius angels to Mother's with the most love in their hearts. He knew that you would love this little boy more then any other mom out there. No matter what challenges you or your little baby faces, there is no lack of love, either from Heavenly Father and Jesus Christ to you, or from you to that sweet little boy.

Ammon and Jen said...

My sister had a child with severe special needs just pass away. In only 3 months, Baby Ava literally worked miracles in the lives of everyone around her. Just being in the same room with her was a profound experience for many people, even total strangers. Though her life was short, and very, very hard for her and her parents, our family is grateful to have had this experience, and we all consider it a very special gift.

I have always admired you in so many different ways. I am sure that your son will be just as extraordinary as his parents are, though things will be hard. Please keep us posted. We are all praying for you.

Niki said...

Along with everyone else, our thoughts and prayers are with you and your family. May our Savior's love bring you comfort and peace.