Wednesday, December 14, 2011

UPDATE

12-14-11

I can't tell you what it has meant to me and my husband to have such an outpour of love, prayer and support directed towards our family.  Thank you for all your emails and for sending our prayer request out to all the prayer warriors you know in your lives.  Yesterday I had several moms email me who have been through similar situations and that has helped me tremendously.  We met with a specialist yesterday and this is the update.  Pretty much we found out more specifics on what they told us on Monday.  Joshua is going to have a hard road ahead of him.   From the ultrasound they can tell that his heart has not formed properly.  I can go into more specifics later but basically his heart is bad but with amazing doctors could potentially be fixed through surgery.  Also his feet look to be slightly turned in; again can be fixed but is a sign of bigger things.  The fact he has a two vessel cord also is not life threatening but is most of the time a marker of more problems to look for.  His hands seem to be clinched more than normal which is a sign of more problems.  With all of that said Joshua could be 'fixable'.  However the big problem is his brain.   There are a lot of empty spaces in his head where the doctor normally sees tissue.  In those empty spaces there is a lot of fluid.  This can mean a bunch of different things.  With the combinations of issues that Joshua has the doctor is leaning to a chromosomal abnormality, most likely Trisomy 13 or Trisomy 18.  If that is true then his life expectancy is terminal outside of me.  The longest a child has ever lived with either is right at one year, most die very soon after birth.  So here is where I need specific prayers.  There is still a high chance it is not chromosomal.  The fact that there is no history of any type of chromosomal abnormalities in either of me or my husbands family history means that there is a 60 % chance it is not chromosomal.  Which would be better but still not great for Joshua.  We still wouldn't know what is wrong with his brain until after birth but there is a chance at least that his life wouldn't be terminal.  God is good and we pray first for a miracle.  Blessed John Paul II still needs a miracle in his name and wouldn't this be a perfect one for him.  Please pray for a miracle for our little boy.  The biggest decision we are faced with at this point is weather or not to have an amnio.  The amnio would tell the doctors if Joshua does have Trisomy 13 or Trisomy 18.  Knowing this information would change the way they treated him when he was born.  His care would be comfort care and not life saving care.  We would get to spend however long God gives him to us loving him, feeding him and spending time with him.  If we don't know for sure it is Trisomy 13 or Trisomy 18 then the doctors will immediately go into saving mode.  Which will means that for 3 days until the genetic testing they will do after birth comes back, Joshua will go through a lot of maybe unnecessary procedures, surgeries and most  likely he will go on a ventilator.  At this point we have said no to the amnio because it puts Joshua at a 1 in 200 chance of causing me to go into early labor.  If anyone has any insight on this particular decision we would love to hear it.  The next step is getting an EKG on his heart and a MRI on his brain.  Texas Childrens is suppose to call me this week to get that set up.  From these the doctors may know more but wont know anything for sure.  Thank you for your prayers and please continue to pray. 

Love, The Smoters

3 comments:

  1. Sarah Beth-
    Sweet girl... So many decisions to make and so much heartache in the waiting you are in now. I am so sorry that y'all are walking this road... yet, I want to encourage you that the Lord is SO FAITHFUL and hears each prayer sent to Him for your precious boy. Our son Maddox was born in 2008 with most of the anomalies you describe after his diagnosis of T18 at 18 weeks gestation. I have a blog where I documented a lot of our journey but I would also love to talk to you if you would like. My friend Erin sent me your blog because she thought our situations might be similar and I would love to encourage you however possible. My blog is thestanfieldjourney.blogspot.com and my email is Kenzie.stanfield@yahoo.com. I would love to talk anytime by phone too. Praying for you all in this excruciating time...
    Kenzie

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  2. Sarah Beth,
    My name is Natalie and I too have been on a similar journey-our first son, Joshua, was born in May of last year with trisomy 13 at St Luke's (attached to TX Childrens). I did decide to have an amnio after much prayer and resistance, but it was a hard decision and either way follow God's leading for you. Also my sister works at Texas Childrens and I would love to provide you some contacts for those there that can give you some guidance (I so appreciated their input). Please feel free to email or call me anytime. I will be lifting you up in prayer sister. Natalie
    natjorgensen@gmail.com or 281-797-3565.

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  3. Sarah Beth,

    My name is Erin and Natalie that posted above sent me the link to your blog. She and I met through Texas Children's as my husband and I had a little girl with trisomy 13 in September of 2010. We had an amnio as well to find out how best to treat our sweet Bailey. Natalie went through the journey first and it meant so much to me to have her to talk to and discuss things with, and to have her as a prayer partner. I will echo her in that if you have any questions, please feel free to email me at eringalloway@gmail.com. Our blog is jamesanderingalloway.blogspot.com and has a lot about our journey with Bailey. I will be praying for you and your family and your Joshua. Love, Erin

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