Monday, January 16, 2012

Prayers for tomorrow

Tomorrow we have another appointment with Joshua's Cardiologist at Texas Children's.  I am excited for the chance to get to see Joshua during the ultrasound but I know it will be a tough appointment. We have been told that it will be the last time we meet with Dr. Lantin before Joshua's birth.  We pray that Joshua has the opportunity to receive heart surgery but there is a high chance that he will not.  It fills me with hope preparing for the series of heart surgeries that Joshua would undergo because if he is able to receive heart surgery then that means he isn't diagnosed with a terminal diagnosis and it means he has survived out of my womb.  Everyday brings different struggles and we are continually feeling God's love and strength.  Nathan and I know that God has a plan and that His will is perfect.  We ask for your continued prayers for Joshua and prayers for Nathan and I to receive wisdom to make the right decisions as they come up.  

The LORD answer you in time of distress; the name of the God of Jacob defend you!  May God send you help from the temple, from Zion be your support.  May God remember your every offering, graciously accept your holocaust, Grant what is in your heart, fufill your every plan.
Psalm 20:1-5

Sunday, January 15, 2012

Mia Beth's Baptism day

Today our sweet God Daughter was Baptized! Here are some pictures from the day.








Wednesday, January 11, 2012

God's love

“I will not leave you nor forsake you.” Joshua 1:5

“Have mercy on me, Lord, for I languish; Lord, heal me; my bones are trembling, and my soul is greatly shaken.” Psalm 6:3-4

“As you do not know the path of the wind, or how the body is formed in a mother’s womb, so you cannot understand the work of God, the maker of all things.” Ecclesiastes 11:5

“Remember your word to your servant, for you have given me hope.  My comfort in my suffering is this: Your promise preserves my life.”  Psalm 119: 49-50

Tuesday, January 10, 2012

Update


Today we had two appointments for Joshua.   It was a very long, very emotional day but we wanted to share what we now know.  First of all Joshua has been super active the last few days.  Now not only am I feeling him at night but throughout the day.  It is truly amazing to feel him move inside of me.  During our first appointment with my regular OB the nurse commented on how active Joshua was and how strong his heart rate was.  (she hadn’t read our file and had no idea what sweet Joshua is up against and it was nice to hear her say something positive)  When we saw our specialist, Dr. Adam, she did an ultrasound and read the results of the tests we had gone through a few weeks back.  From the MRI she said that Joshua has Holoprosencephaly which means an incomplete or absent division of the embryonic forebrain (prosencephalon) into distinct lateral cerebral hemispheres.  She said this is most commonly found in Trisomy 13 so now she is leaning more towards Trisomy 13 than 18 for Joshua.  She said that most Trisomy 13 babies have more bizarre or abnormal physical features, which Joshua does not seem to have but that every case is different.  She talked to us a lot about where we go from here and once again STRONGLY recommended doing an amino.  We told her we might consider it later in the pregnancy when we know that Joshua is viable.  She said we could do it as late as 33 or 34 weeks.  Dr. Adam was very pleased with Joshua’s growth since last month.  He is still measuring 2 weeks behind but he was 2 weeks behind last month so he grew the appropriate amount.   On the way home Nathan and I were rejoicing in this because as long as he continues to grow our chances of carrying him to term are possible.   Assuming I carry him to term she will do a c-section the week of April 16th.  The best part of today though was seeing Joshua on the ultrasound.  He is absolutely beautiful! One of the benefits of seeing so many doctors is having so many opportunities to see our precious baby.  Thank you for all the prayers today and we ask for your continued prayers for a miracle.

“For with God nothing will be impossible.”
Luke 1:37

Monday, January 9, 2012

Love

I took some pictures of the boys playing and eating lunch outside last week here were my favorites. Please continue to pray for their brother, Joshua. 
(We have 2 appointments tomorrow)

Saturday, January 7, 2012

Time marches on


As I sit in my bed reading the book “I will Carry You” a story of a mom who has walked my path before me…I am compelled to write about all the things on my heart right now.  As I type, Nathan is taking the lights and remaining ornaments off of our Christmas tree and preparing to take it outside to leave at the curb for the boy scouts whom will pick it up in the morning to be recycled.  Every year it is sad to say goodbye to the tree that has been a part of our living room and memories for the past month and a half.  But this year it is a different feeling.  The first day of Advent when we took the kids to the Christmas tree farm to pick out our tree our lives were so very different than they are today the day of the Epiphany and the day we are walking our tree to the curb.  On that day over a month ago we were filled with joy.  Joy of thanksgiving for all we had been given and my thoughts were mainly on the promise to myself to make this season of Advent about our Lord and Savior and for our boys to be filled with anticipation for the birth of Jesus.  I had wanted each day of Advent to be about preparing for Jesus and I had prepared many traditions to start with the boys this advent season.  I wanted to do my part to make Christmas about Christ first and not about just Santa and toys.  We went to Church early that morning of the first day of Advent.  (the 7 am mass which might not have been the best idea looking back) But I had told Nathan all my plans for the day and it was made clear that we would have to get an early start.  After church we came home and changed and headed straight to the Tree farm.  The boys were so excited and we were amazed that even though James was only 22 months last Christmas he still remembered our tree and was looking forward to bringing a tree home and putting the angel on top.  We got to the tree farm and after walking around in circles looking over and over at each tree for imperfections and finally came to a consensus on the perfect tree.  We watched the men prepare the tree and the boys were so excited as Nathan strapped the tree to our car.  We drove home, put the kids down for their naps and began preparing our house for Christmas.  Later that day we wrapped up our baby Jesus from the Nativity we set up and talked of how that would be the first gift that our family would open on Christmas.  We created our first ornament for our Jesse Tree and read the verses and story that went along with the ornament.  The boys opened a gift for the first day of Advent, which was a puzzle of the Nativity scene that James has done now at least 100 times.  We hung the boys stockings on our mantle and Nathan and I chose which stocking I would begin making for our third child.  I decided to get a head start on his or her stocking so that I would have plenty of time to get it finished before his or her first Christmas next year.  At night we continued to pray at our home altar and we set up our advent candles to be lit during family prayers.  We prayed every night for our sweet baby and rejoiced in how blessed we were for our growing family.  Tonight as Nathan carries the tree out to the street I can’t help but think about how different today is from that day.  On December 12th about half way through our Advent journey our lives were turned upside down.  I feel there was a reason that our journey started during this season and I feel I can and have connected with Mary through this season of Advent more than every before.  This is a Christmas that we will never forget.  It may be the only Christmas here on earth that Joshua gets to spend with us and we spent this Advent cherishing our memories of him with us during this season.  Now that Christmas is over and as we pack up our decorations it makes me sad and scared to the time ahead of us.  I so desperately want time to stop.  I just want Joshua to LIVE forever and if he can only live while in me then I never want him to come out.  Before December 12th I was so excited for time to go quickly and I spent most days skipping a head to his birth preparing for how our lives would change as a family of 5.  We already bought a new car with a third row, moved a second twin bed into James room for John Patrick and started preparing for things in the near future.  The trip we would take in May to Florida to see Nathan’s sister get married, how that would work with a 3 year old 1 year old and few week old.  I spent days daydreaming of how that trip or how this summer would look.  I was counting down the days I would carry him or her and couldn’t wait to have our new addition.  Now everything has changed.  I am no longer counting down the days with excitement but rather grasping for each day not to pass and am filled with so many questions and uncertainly of how I will make it through each coming day.  The end of Christmas is the first big sign that time is moving on and that Joshua’s birth however or whenever that day comes is fast approaching.  As I type I feel his little body kick and move inside of me.  Oh how I don’t understand right now God’s reason for our trial.  I pray for understanding I pray for Grace and I pray to be the mom Joshua deserves during his time with us and beyond.  Something I read tonight stuck with me.  TRIAL (old testament) noun: from the Hebrew word sara which comes from the root srh, which means, “to bind, tie up, restrict.” Thus comes to denote a narrow place in life where one is bound or restricted…  Oh how I feel bound and restricted. 

Monday, January 2, 2012

Joshua

Thank you for everyone's continued prayers for our sweet Joshua.  I apologize if you have sent me an email, text or phone call in the last few weeks and I haven't returned your message.  We have seen an outpouring of love and with the holidays, appointments and just keeping up with our boys we have stayed quite busy.  We have no new updates on Joshua to share.  Even though we had some extensive tests done a few weeks ago on his brain we were not given any information on the results.  Dr. Adam will be the one to read the results of the MRI and ultrasound at our next appointment with her on January 10th.  Right now we are enjoying the time God has given us with Joshua.  The boys talk about Joshua all of the time and are always loving on and praying for him.  Bringing in the New Year was hard for Nathan and I.  It is hard to look forward, we are trying to focus on each day God has given us and giving God control of the days to come.  We know that 2012 will be a year we will never forget and we pray for the faith, strength, courage, and wisdom we will need to make it through.  Please continue to pray for a miracle. 

Passmore Park

video
The boys are loving the new "park" as they call it at Grandma and Grandpa's house.