Posted (Tina) in All Posts on April-9-2009

Ella slept okay last night. Several times, the pulse oximeter alarm went off, so I had to run into her room. At times, it was not apparent what was wrong because her numbers looked fine. When I woke up after getting up several times, I realized that it had to be her cannulas out of her nose. That is the only way that the alarm would intermittently continue to alarm. This happened more than once which made for a less than restful night.

She tolerated her feeding therapy and physical therapy today quite well, which was good to see.

Today was a rough day. We’ve been holding off on our news: I’m pregnant. I’ve been exhausted and sick for weeks now. We had our big debut planned with a cute shirt for Ella to wear bearing the phrase, “Big Sister”. Our hearts were anxious, but we know that we can trust the Lord and that there are never accidents; He always has a plan.

Well, we went for our first trimester screening this morning (I’m 12 weeks, 6 days) and received devastating news. It does not look like the baby is going to live. It has severe abnormalities and defects that make its life not viable including but not limited to: a chest cavity that is not fused placing all organs external to the body (liver, heart, bowel, etc.), fluid on the brain with large portions of the brain not formed, a skull that is open with brain matter floating in the amniotic sac too.

As you might imagine, this came as quite a shock to both of us. I had been holding out hope that our baby would be healthy, but had reservations due to our experience with Ella.

At this point, we just need prayer. The heartbeat is still there and beating quite nicely outside the chest cavity. We are told that there is 0% chance of survival; this is a lethal birth defect. As was the case with Ella, we are told that this birth defect is extremely rare (1:15,000 live births) and that they do not know what causes it and it is not genetic-based. As the perinatologist shared, “I feel like lightening has struck you twice.”

Hearts are heavy at the West home, so support and prayers are the best that we can ask from all of you at this time. We need wisdom and guidance from Him. And at the same time, we are so thankful for our beautiful baby girl that we get to enjoy each day.

We don’t always understand His ways, but hope that this experience too can be used to help other families and be an instrument for eternity. God even used this experience already this morning, when we were able to minister to my OB/GYN. He had to share devastating news with us, but we also accepted it and shared our faith with him. He let us know that our faith has touched his heart. And he became emotional and shared that this reminds him of Job’s experiences recorded in the bible and yet even in the midst of the worst trials, Job had these words to share:

Job 19:25 (NIV)
I know that my Redeemer lives…

Terri Trainer on April 9th, 2009 at 10:00 pm #

Oh sister, my heart is broken for you. Words are not enough…
I love you both and will be in deep prayer.

Jan Costas on April 9th, 2009 at 10:34 pm #

Without the Lord, where would you be? I’m lifting you in prayer.

Kellie on April 9th, 2009 at 11:11 pm #

I don’t even know what to say. I’m heartbroken for you. My stomach fell like I was in free fall when I read your post. I am so sorry and will keep you in my prayers. Hug Ella tight and remember, she is still a Big Sister. Email me if you need to vent.

Amber Riley on April 9th, 2009 at 11:36 pm #

My heart is aching for your family…How can this be?? Tomorrow is Good Friday…Why Lord, why?? Praying for you…

kristin thompson on April 9th, 2009 at 11:38 pm #

Oh my sweet west family. what agony you must feel. We are feeling it for you all. Lord, Heavenly Father please wrap your arms around this family and ease their hearts and spirits. Fill them up Lord because they are frightened. They call for you Lord because they need you. We know that you are there for them as it is written in Your Word. Jeremiah 29:11-14

I love you all and will pray for all of you. Tina…Matthew 11:28-30. Blessed quiet in your soul. I love you.

Dotty on April 10th, 2009 at 12:09 am #

i am so very sorry for your devistating news. continue on in your trust in the Lord, we dont always know his reasoning, but there is a bigger plan. i have found these two blogs if you get a chance i think you may get something out of them…



God Bless

Angela Rowe on April 10th, 2009 at 12:52 am #

Josh and Tina,

we will be praying for you guys daily.Your strength and stead fast faith is stength to us all.Your Family is a blessing and your baby a gift. Thank you for sharing the depth of your hearts will all of us.

(Melissa's big sister) on April 10th, 2009 at 1:11 am #

My heart is heavy and our family will be praying for you… knowing He is in control and walking this road are just some of the toughest things to experience in this life here on Earth. Know that many will be right there with you as much as we can be as we lift you up to our Father who holds you in His hands tenderly…. much love from across the miles… Adrienne

Kathy in West Texas on April 10th, 2009 at 3:48 am #

OH goodness. I am so sorry to hear that. My prayers are with you and your family.

Laura Leichty on April 10th, 2009 at 4:44 am #

WEll that totally STINKS!!!!!!!!!!!!!!! I’m so sorry you have to go thru this. Please know I will be praying for all of you and that I’m confident God is using your family to touch more people than you can imagine. I know that is probably little to no comfort right now but someday GREAT is your reward!
Sending hugs from IN,

The Dirirm Family on April 10th, 2009 at 4:51 am #

Josh and Tina-
Our hearts our broken for you all. Thank you once again for sharing your pain and your faith in our Sovereign God. It is ministering to many and spreading His fame far and wide. We are praying for you both.
Rest in Him! Pat and Barb Dirrim

Lynn on April 10th, 2009 at 5:47 am #

I’m so sorry. Your faith and witness even in the face of heartache — especially in the face of heartache — is an inspiration, and a true reminder that God never gives us more than we can handle *with God*. My prayers this Good Friday will be for the West family.
Much love, Julie’s friend Lynn

Marge (A Friend in Indiana) on April 10th, 2009 at 5:48 am #

What heart breaking news; I’m so sorry for your pain and anguish. Trust in Him for guidance, comfort, love and peace. Know that you all have been an enormous inspiration to so many of us; you are in my prayers. Take care and may God continue to bless all of you; may Ella have continued progress and His fullest blessings.

The Williams on April 10th, 2009 at 5:51 am #

Since I heard the news, I have been a little mad at God! I know we are given these test for a reason, but this one is hard to understand. I love you guys and will pray for you two.

Gina on April 10th, 2009 at 6:04 am #

I am so sorry about the news of your baby. Your entire family are in our thoughts and prayers.

Wyatt’s Mom

The Brittain Family on April 10th, 2009 at 6:13 am #

tears of sorrow….and hope. we are praying. may He hold you close as you care for Ella and this very special miracle of love.

Lesli Richards on April 10th, 2009 at 6:23 am #

Just crying…I’m so sorry. Praying that God would give you comfort and wisdom and peace. There are just no words. Love, lesli

Krista Chiefa PT on April 10th, 2009 at 6:33 am #

So sorry to hear this news. It is heart breaking. May you find peace within prayer and your love for one another.

Jessica Fenske on April 10th, 2009 at 6:53 am #

So very sorry Josh and Tina 🙁
I love you guys.

Williamsburg on April 10th, 2009 at 7:01 am #

Privileged to be able to agonize with and for you on the journey. All my love. XOXOXO

Pam Moore on April 10th, 2009 at 7:42 am #

Josh & Tina. My heart is breaking for you guys. Just know that God loves you, we love you and are praying for you. I pray for peace and understanding for you. I pray that God will give you the strength to do whatever it is that you must do. Give Ella a kiss from me. I love you guys!

Cindy on April 10th, 2009 at 7:48 am #

Oh no! I am so very sorry about your baby.

I haven’t checked your blog in a while and am so pleased with how big Ella has gotten and how cute she looks.

Dawn Franck on April 10th, 2009 at 7:54 am #

Tina, Josh and sweet baby Ella, I am just so sad for your family, like others have said, words can not express my feelings. We will be thinking of you guys and praying for you. All our love, Dawn Mike and Alli

Amy Miles on April 10th, 2009 at 7:57 am #

The news of your baby saddens me and breaks my heart. It is so hard to understand why families have to endure one storm let alone multiple. We will continue to hold your baby and family up in our prayers.

Anne in Gainesville on April 10th, 2009 at 8:03 am #

Our hearts go out to you in this difficult time. As we go through this season of dyings and risings, you will be in our prayers.

Kelli on April 10th, 2009 at 8:13 am #

God will never take you where His grace can not protect you.
My love and prayers go out to you during this difficult time.

Joan and Steve Odell on April 10th, 2009 at 8:27 am #

Dear Hearts – Even though we know that God has plans it doesn’t make the pain and heartache any less. It is okay to have feelings of sadness, questions and hurt. You are all three as well as your families in our hearts and prayers. Easter reminds us that out of the blackness comes light and new life. He is holding you in his hands. We love you – Steve and JOan

Debbie on April 10th, 2009 at 8:35 am #

Words are not enough! You are in our prayers.

sherry martinez on April 10th, 2009 at 9:18 am #

although we have never meet i feel very close to your family. although our journeys are different we have had many similarities, and your words have always been encouraging. If I can do anything to help, please drop me a line. It saddens me to know how much sadness you must feel. all I can say to try and help is to look at the miracle right before you and just love her,hug her and kiss her. I wish I had some better words of wisdom for you but all I can do now is pray for your family. Love and Hugs from Sherry and baby Cayden

Corie O'Brien on April 10th, 2009 at 9:33 am #

I received your website from Adrienne Belaire. I have no amazing words or thoughts. I had a son in January of 2008 who was diagnosised in utero. I can’t imagine all you have gone through and then this. I know I don’t know you, but I live in Highlands Ranch. Let me know if there is ANYTHING I can do. Praying for you

Vicki/CO on April 10th, 2009 at 10:23 am #

There are no words…just faith that God is holding you in His arms as a little child who is hurting and needs comforting. We can not possibly understand any of this, but I look at these pictures of precious Ella, and the miracle of her being with you is God’s love in the flesh! Yes, Ella will always be a “big sister” now, and you will always be the parents of two. The strength and courage and comfort and peace you will need will be given by your Heavenly Father who already has walked with you every step of your journey with Ella and will continue to do so. I wish I could do something…I wish I could “fix” it…I wish I could make the pain go away…but I can’t…but God can and will in His time, in His way. God bless you all and your extended families and Kelly, too. I lift you all up once again for a miracle of healing and comfort. I am so very sorry.

Liz on April 10th, 2009 at 10:41 am #

I am saddened by your news. You are in our prayers.
I tried to contact you through your contact page but I am having trouble getthing through. Will you please email me. I would like to share some informatation with you.
Thank you.

Lisa Tufano on April 10th, 2009 at 11:12 am #

Tina, I am so, so sorry. I can only imagine the rollercoaster of emotions you and Josh are experiencing over this. No two people deserve this less…

kara on April 10th, 2009 at 11:22 am #

It just makes me want to vomit. And cry. I love you both SO much. I wish I could be there to hug on you. I will pray in earnest for all of you. Man I love you guys!

Jen Miller on April 10th, 2009 at 11:51 am #

My heart is so heavy for you guys. There just aren’t words. I’m so very sorry to hear this news, and I’ll be praying for your family.


Barbara Mullins on April 10th, 2009 at 11:54 am #

I’ll be praying for you all. Proverbs 3:5-6.


Julie Kirk on April 10th, 2009 at 12:16 pm #

Tina and Josh, I am lifting you up this evening. Affectionately, Julie

ingrid, alex & alina houchin on April 10th, 2009 at 1:19 pm #

We found your blog through baby Carter’s blog. Ella is so beautiful!We are so sorry about your devastating news. It’s just terrible and we feel for you. You are in our thoughs.
Ingrid, Alex & Alina from the UK

Eve Johnson on April 10th, 2009 at 1:46 pm #

No words are sufficient. Just prayer for all of you. Lord, help us to understand.

Gloria & Red Jacobsen on April 10th, 2009 at 2:05 pm #

Dear Tina & Josh,we are so sorry to hear the news.May the Lord continue to strenghen you and yours. Our prayers are with you and all your family.

Teresa Reed on April 10th, 2009 at 2:23 pm #

Tina and Josh…I am so sad to hear this news! My heart and thoughts are with you…I love you guys! Our family will be praying for you!

Alison Cieszko on April 10th, 2009 at 2:25 pm #

Prayers from our family. What a beautiful family, and a profound resilience you exude. I’m sure He couldn’t be more proud in how you are serving Him, especially in this difficult time.

The Cieszko Family (Chris, Alison, and Davis Michael Cieszko)

Karissa Benoit on April 10th, 2009 at 2:55 pm #

Josh, Tina, and Ella…
I am so very sorry. You are in our every thought and prayer during this time.

Linda.willingham on April 10th, 2009 at 3:49 pm #

Tina and Josh, I am so very very sorry to hear this news. There are no words that can take the pain away. Just know that many are praying for you right now.

Jessica Singletary on April 10th, 2009 at 4:59 pm #

I am so heartbroken to hear this news. Our thoughts and prayers are with your family during this time. If you need anything please do not hestitate to email us.

Jill E G on April 10th, 2009 at 5:35 pm #

I’m so sorry to hear your news. You guys deserve a break. You are in my prayers. Please email if you need to talk or if their is anything I can do.

Joel Snyder on April 10th, 2009 at 7:11 pm #

Ella, I am nursing a broken heart at the news from Mom and Dad. I am praying for strength and understanding at this time and knowing with help we will be able to face this challange. I love you and will check on you later. Love,Grandpa!!!!!!!!!!!!!!!!!!!!!!!

Naz on April 10th, 2009 at 7:26 pm #

Wishing you strength and sending you and your family lots of love. Take care of yourself.

Katie on April 10th, 2009 at 7:30 pm #

I am so very sorry to hear of the devastating news you’ve received. I’ll keep praying for your family.

Amity Chase on April 10th, 2009 at 8:49 pm #

So sorry to hear your horrible news. Congrats on the life within you! Know that your little one is feeling your love right now with every beat of your heart. Praying for God’s Will–weather it be miraculous recovery or only a few months of precious time loving that little one.

Summer on April 11th, 2009 at 5:53 am #

We are friends of Brad, Kelie and Carter Myers. Just wanted you to know we will pray for you.


Layne on April 11th, 2009 at 1:56 pm #

Wow. Tina and Josh, there just aren’t words for how sorry I am that this is happening to you. I remember how strong and determined you were for Ella, how hopeful and proactive. You, more than most, deserved a break with this next pregnancy and it breaks my heart that you are going through this again. Much love to you and God bless. My thoughts and prayers are with you.

~Layne (Shands NICU RN)

Heidi Ham on April 11th, 2009 at 2:17 pm #

The West Family – you are all in my prayers! So sorry for you all. Big hugs and kisses.


Cathie Firestone on April 11th, 2009 at 5:30 pm #

As so many others have said…there are no words sufficient to say…we are praying for all of you. We know that God is the Master Planner…He will use this precious life too to further His kingdom…you’re faithfulness is such an inspiration to so many. We love you…Carl and Cathie Firestone

annie (nurse at Shands) on April 11th, 2009 at 5:56 pm #

Oh my goodness, what horrible news. I am sorry to hear, I can’t imagine what you are going through. My husband and I just stopped to pray for you and will continue to over the next 7 months.

Eve Sheridan on April 12th, 2009 at 1:57 am #

Our hearts are with you, Josh and Tina. We’re so very sorry. Sending prayers, strength and love.
~The Sheridan’s

Lisa Richmond on April 12th, 2009 at 9:17 am #

wow…I just read your post. A single prayer just will not do…You will receive sooooo many prayers from the Richmond family..! My heart aches for you..HIS love for you is abundant..I just don’t understand it..but, I can accept it and will rejoice in it that your family is so special..very few would have been chosen to do what you do on a daily basis! Have a blessed day..you are in our hearts and prayers!

jenn m on April 13th, 2009 at 5:04 am #

Oh Tina and Josh! I am so sad to hear your news. I’m so very sorry. Praying for you.

Jenn Miller

Jennifer Harris on April 13th, 2009 at 7:49 am #

We are so sorry to hear this news and know that your family is in our prayers. GOD has plans for you and we will continue to pray for HIM to show you HIS goodness and mercy. HE will!

megan on April 13th, 2009 at 9:31 am #

Tina and Josh I am so sorry that this happened. Things are so hard to understand sometimes. You all are in my prayers. Hugs~

Jenny G on April 13th, 2009 at 7:09 pm #

I am so sorry for both of you and will be praying for your family. A good friend of mine went through a similar experience with her first pregnancy several years back and wrote a book based on her experience. It is called “Forever Altered, Yet Unbroken” by Kasey M. Carter. It is very inspirational and has helped many parents I know.

Albert Kents on April 16th, 2009 at 5:50 am #

am Praying and i believe God is in Control. He has good plans to bring good health and healing to Ella.

when we pray, He hears us. How wonderful is our God, He does the impossiblities.

He is in Control

Your friends at Dr Richard Wallace's office on April 17th, 2009 at 12:42 pm #

Our hearts are so saddened by your news. You both are such a testimonial to your faith. Our thoughts and prayers will continue with you as you deal with this challenge in your lives.

Peggy on April 17th, 2009 at 5:51 pm #

Tina and Josh, I am so sorry you received this news about your baby. You continue to be in my thoughts and prayers.

Post a comment

Name:  (required)
Email:  (required)