26 week Ultrasound

Hey Jaxton,

You are 26 weeks now!

We got to see you on an ultrasound after 8 long weeks of wanting to see you again! I wish it could have been a 3D/4D because only the doctor can really see what all the parts are. After all the weeks of waiting I was disappointed to not have been able to see you more clearly. We asked Dr. Star if he thought the brain or the omphalocele looked any better or any improvement. Unfortunately my dear, it looks to be the same. You are doing great in there and I just want you to keep doing what your doing. ย I’m in the process of ordering you a special personalized blanket and also a larger size for us as a family to remember you. I just had someone write me and she wrote “I’ll be praying that Jaxton gets to use his child-sized blanket and not just his newborn size.” I too am sooo hoping that you will be able to be with us and it won’t just turn into an oversized kleenex for me to cry in every time I miss you. I’m also wanting to get you a Baby Be Blessed Doll but the lead time to get it is months from now.ย http://www.babybeblesseddolls.com/

Did you know we prayed to have you? You were not a mistake. Everything about you is perfect and precious. There is nothing about you we would want to change except more time with you. We love you already! I have been reading a book your Auntie Mimi let me borrow called I Will Carry You by Angie Smith. (http://audreycaroline.blogspot.com/) It is a really touching story about here daughter Audrey Caroline.

I will carry you lyrics:

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies wipe your teary eyes
Who could love you like this? People say that I am brave but i’m not
Truth is i’m barely hanging on
But there’s a greater story
Written long before me
Because he loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the one who’s chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to his voice
And he says

I’ve shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies no more teary eyes
Who could love her like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the one who’s chosen me
To carry you

_ _ _

According to statistics:

Because of the Trisomy 13, you will most likely spend your whole life in the hospital and never make it into our home.

Because of the Omphalocele/(Digestive system on the outside of his body) you will be fed through tubes and never be breast fed.

Because of theย Holoprosencephaly/(Brain not formed correctly) we will never know how much you really understand.

According to Us:

Because YOU are our son we choose to have you.

Because we love YOU so much we will pray for miracles.

Because we believe in GOD we have hope, joy and peace.

You are our son who we hoped and prayed for! We love you!!!

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10 responses to this post.

  1. I have read Angie’s book, and it really helped me. I have been giving it to others in hopes that it helps them too. I actually played that song in Aubree’s funeral, and it is still hard for me to hear. As for the Baby Be Blessed..Aubree was buried with a pink lamb that was made for her on very short notice..They rushed it to us once my mom wrote to them and told them our story..Maybe they can do the same for you… I have the exact same lamb as her sitting on my shelf..I used to sleep with it and the blanket they wrapped her in once she was born. It is exactly the same size as she was..Coincidence? I don’t think so..I continue to pray that Jaxton will live a full life outside of you..Nothing is too big for God..

    Reply

  2. Lisa – Jaxton looks like he’s grown since I last saw you guys! I read through the family’s story that you posted and was so touched. I will keep praying hard for Jaxton and you all – that you would rejoice in the small miracles and find joy in everything through God’s grace.
    Hugs to you all –

    Jessie

    Reply

  3. Your blog popped up in a “google alert” I have for Trisomy 13.

    As I look over at my 10 yr old sleeping – who is LIVING with Full Trisomy 13… let me tell you what life is like, or what you can expect ๐Ÿ™‚

    In reply to those statistics..
    No we have not spent her whole life in the hospital, Natalia is in and out for any surgery needed, and has been treated as they would treat a typical child for each need medical condition that has been presented.

    No I was not able to breast feed her and she was out fourth child, so we just adjusted. She used a haberman bottle for cleft lip and palate babies.. when she had trouble getting enough feeds at 6 weeks we had a g-tube inserted. She has been g-tube fed her entire life.. she is fine. She is as tall, and matter of fact, 75% height for her age at 10 yrs and she is 50% for he weight. She is growing like a weed. And she is just fine with it, we try to oral feed and she is just not interested. Frankly, g-tube feeds are my cup of tea.. they are easy ๐Ÿ™‚

    Holoprosencephaly.. there are many variations of this too.. check out Josiah.. he is local to us in Southern Calif.. he is a cutie.. and was actually our inspiration when Natalia was born.
    His story is here.
    http://www.livingwithtrisomy13.org/entry.php/32-Josiah-Alderson-Born-January-14-1998-Costa-Mesa-California-(CA)-Full-Trisomy-13
    OH by the way, he also had an Omphalocele… there phone is off their page if you’d like to talk.
    I also have their email if you can’t seem to connect with them.

    So what is like like with a trisomy child. Well, the first year is crazy.. it is … everyone telling you they are likely to die, getting use to this new journey etc.. but now there is MUCH support…
    check out these resources too
    http://www.livingwithtrisomy13.org/forumdisplay.php/2-General-discussion-Trisomy-13

    My child has known our love from DAY1, she responded to our touch, calmed to our voice and touch and loved us in return. She smiles, she kisses, she is very aware… make no mistake, she is aware of what we do and communicates in her way.

    There are well over 300 stories of amazing moments of love shared within the many stories on the LWT13 website… You’ll see them as you view the albums

    If I can be of any support let me know.
    Blessings,
    ThereseAnn, mom to Natalia
    http://www.thehealingpowerofprayer.com

    Reply

    • Just read that families story as well as yours! Thank you for sharing with me your personal victory of being the mommy of such a special child! It is uplifting for sure.
      Thanks you for being available to talk to as well! ๐Ÿ™‚

      Reply

  4. Posted by Michelle Bradley (Aunt Mimi) on November 23, 2010 at 11:27 pm

    Crying again ๐Ÿ˜ฆ The song is beautiful and I am glad you are liking the book. So I always think I am clever and i had already emailed bbb about getting you a doll and I had already emailed photogs about pics ๐Ÿ™‚ Gosh I am never going to be able to surprise you! ๐Ÿ™‚ and you need to find your phone because how did I not know you were going to have an ultrasound?? Love you and J , J and J ๐Ÿ™‚ Praying xoxo

    Reply

    • Love all the happy faces in your message! ๐Ÿ™‚ ๐Ÿ™‚ ๐Ÿ™‚ You always make me smile!
      Oh my gosh! you must have a way of reading my mind. Thats so thoughtful of you to do that. I feel like I am so out of touch with you and in a complete fog. My life right now feels like i’m driving through a foggy and rainy storm. I’m sorry if it seems I have been so distant. I can’t apologize enough for not keeping up with you and life especially after your birthday! The doctor appointment was last minute and it almost didn’t happen because he delivered a baby this morning. We really liked him! I need to get a phone asap wo we can text and talk. Wanna here about all your plans for Thanksgiving. Just case you didn’t know… I AM SO THANKFUL FOR YOU!!!!! Love you so much! Big kisses to the lil ones!

      Reply

  5. Posted by Debbie K. on November 25, 2010 at 10:11 am

    Hi Lisa:
    I came across your blog from another blog that I follow. I now have it saved as a favourite of mine. I am amazed and inspired by your positivity, hope and love during this time. You truly are an amazing woman! Thank you so much for sharing your journey with us!

    Reply

  6. Posted by Debbie on November 25, 2010 at 7:18 pm

    Arghhh I was ordering you a personalized blue baby blanket!! Should I cancel it? ๐Ÿ˜›

    That song is beautiful…

    Reply

  7. Please send me an email! We would LOVE to make Jaxton a special gift! Much love~Tina

    Reply

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