Friday, April 11, 2014

It's been a long, hard day.


I got a pass from the hospital so I was able to spend the day with my sweet Rebecca.  The nurses went out of their way to let us all hold her.  It was very complicated due to all the wires and tubes but it was wonderful to get to hold her even if it was only for about 30 minutes.

Later, after Peter and Sarah left, we met with her entire medical team and the news was not good.
In addition to the esophageal atresia (EA) where the top part of the esophagus ends into a pouch and doesn't continue on into her stomach , they believe she also has a tracheoesophageal fistula (TEF).  This means that the other portion of her esophagus which does go to the stomach has a portion that has fused with her trachea.

They were hoping to repair the EA yesterday but after arriving at Brenner, she was struggling so much to breath they ultimately ended up putting her on a ventilator.  Because her esophagus is so tiny, they had a very hard time even getting her onto the vent.  Apparently it took several skilled doctors attempting to vent her before they were successful.  Dan said at one point there were over 10 people around her trying to keep her alive and get her on the vent.

It is the medical team's opinion, based on the trouble she had yesterday, that she would not survive the surgery.  And now that there is a TEF involved as well, they are worried that they would get in there and there wouldn't even be enough esophagus to do the repair.

After that heartbreaking news we were left discussing our options.  After many conversations and many more tears, we are still trying to decide exactly which option is best for Rebecca. But whatever we decide, it will end with us saying goodbye to our little one.

Please pray for wisdom, peace and comfort.



42 comments:

Erica Saint said...

Beth, she is so adorable. I am sorry that you didn't get better news. Truly sorry. I will continue to pray.

Madeline said...

Oh Beth. I have no words. This is not the news we wanted. I am very glad everyone was able to hold her. She truly is beautiful. I am still praying for a miracle, but I will pray for wisdom, understanding and peace as well. Rest well.

Mari said...

Oh Beth, I have tears running down my cheeks as I type this. I'm so sorry for this news and I really have no words. Praying...

Mary Lenaburg said...

My heart is breaking my friend. I can only imagine how difficult this day and the ones coming will be. Know that I am on my knees for you, Dan the kids and sweet Rebecca. You are not alone, never alone. Praying for peace and wisdom for you.

Jenny said...

Beth I'm so sorry…I just want her to be in your arms and not surrounded by all those tubes. I praise God for the gift of her life, she is a beautiful little girl.

MarianneF said...

Praying for you and your family!

Amelia Bentrup said...

She is beautiful. Hugs and prayers.

Rebecca Rooney said...

Praying for you and your family. What a beautiful baby girl!

Angela Nash said...

Rebecca is so adorable in that pink hat! Prayers for her, the doctors, and your family.

Aimee said...

Beth, I am so desperately sorry that you did not get good news about Rebecca. I will pray for your wisdom and strength. I hope you can get even a moment of rest as you bear the heavy burden of decisions for your baby.
I'm continuing my prayers for you and your sweet girl.

Billie Jo said...

My sweet, sweet friend...
I shall pray for your mind and your heart...
That you will feel the arms of our Lady wrapping you in comfort...
Hugs and love to you all.
Your sweet Rebecca is beautiful.

Suburban Correspondent said...

I am so sorry. I was hoping you would at least have a month or two to cuddle and enjoy her, the way a friend of mine did with her baby. So, so sorry...

Erika said...

Oh Beth, I can't imagine the heartbreak. Sending prayers for you, your family, and your beautiful little girl.

Kathryn said...

Beth, I so wish I could take this pain away from you, this sadness, this heartache. Please know and trust that our prayers for you are unceasing and you are so loved. God bless as you walk this difficult road. ~K

lisa kallenbach said...

What a precious girl you have. I just love her tiny, sweetly closed eyes in the picture. I'll be praying for you.

Kay said...

I'm just so sorry. I don't have words other than I will pray. Anything else I could say or do pales in comparison to taking your requests before Him on your behalf.

Lauren said...

I'm sorry for today's news. I have been praying unceasingly for you for several days now, thinking of you all the time. You and your family, including precious Rebecca are being supported in prayer. I pray that you can feel it. Your daughter is beautiful. I'm glad you were able to spend some time with her today. Praise be to God!

Bonnie said...

Your little girl is BEAUTIFUL! I just keep taking her in - she is SO lovely!

I'm so glad the NICU nurses made it so you could hold her - what a blessing!

You continue to be in my prayers, Beth. I send you a big hug.

Unknown said...

Gorgeous, loved girl! May you know peace and have wisdom in these next few days. Praying from NYC.

Ferrell Boys Mom said...

She is precious! I'm so sorry the news hasn't been what we had hoped for. You, your family,and sweet Rebecca have been in my prayers. I pray for peace in whatever decision y'all make. <3

Maggie May said...

I am beyond words and filled with love and prayer for you and your daughter. I hope you can hold her and touch her every moment possible.

Tammi Humphries said...

God Bless this beautiful baby girl & her family. I have and will continue to pray that God will be in the center of this life, her loved ones and the medical staff performing any kind of contact with this precious one. She is a gift from God. We may never know the magnitude of how she has already touched lives. She has a purpose. Already a miracle. May our Heavenly Father provide wisdom, comfort & strength to her and her precious family.

Rebekah Es said...

I ask for peace, strength, wisdom and guidance for all of you. Rebecca is so so beautiful!

Kate said...

Wisdom. Peace. Comfort. Praying praying praying for you and your family and especially little Rebecca.

Laura Pearl said...

My heart is breaking for you all. May God give you peace.

Rebekah said...

Oh my goodness. Im so sorry for you. Praying for healing and peace.

Jessica said...

Praying, praying, praying. She is so beautiful, Beth. I am so happy you all were able to hold her. God bless you all.

Evden said...

Beth, She is beautiful! You all will continue to be in my prayers.

beth in nc said...

Many prayers for your family's peace, I cannot fathom the depth of your joy at loving her and the sadness at the news that you may have to say goodbye so soon....knowing that you are leaning on the Savior during this is comforting to me....

Mary Kate said...

She's a truly beautiful girl. We are holding all of you in our prayers.

Hallie @ Moxie Wife said...

Oh, Beth. I'm so deeply sorry. You, your beautiful girl (what a cutie pie!), your family, and all your loved ones will be in my prayers.

Wendy said...

It's heartbreaking to hear this Beth but I am so glad all of you got to spend some time with her today. She is beautiful! Continuing to pray for all of you and the doctors involved in her care.

Anne B. said...

So many prayers for you, your family and your beautiful, beautiful daughter.

MamaH said...

Your baby is just beautiful. I am so very sorry for what you're all suffering. Our Lady Undoer of Knots, please pray!

katiejeancooks said...

Beth, Continuing to cover you and your family in prayer. So, so sorry the news is not what we have all been hoping for. NICU nurses are incredible, are they not?? So happy to hear that they made sure you all got to hold Rebeccca...what a blessing!! Debbie

Dianna@The Kennedy Adventures said...

Lifting you and sweet Rebecca up in prayer. Much love to you, Beth.

Tri Mama said...

Life is just not fair sometimes. I know God has a plan for your family...it's bigger and better than any of us can understand. But I'm not ashamed to say it - I'm very sad that you didn't get your miracle. Please know I'm continuing to pray for all of you, and most especially for wisdom with regards to all the decisions you have to make.

Tony Hart said...

I don't know you but will pray that Gods Grace and Comfort be just what you need to carry you through some rough days ahead. We don't always get the answers to our prayers that we want but ultimately when we pray that Gods will be done we also have the faith and trust and confidence that He makes no mistakes. Enjoy your little angel while you can. You have many people praying for you all. Blessings

Elise said...

Oh, Beth. I am so sorry. Continued prayers for you & your family, and of course for your beautiful, beautiful Rebecca.

Sarah said...

I prayed for all of you during Mass tonight. I'm so sorry to read this news.

Sarah said...

I prayed for all of you during Mass tonight. I'm so sorry to read this news.

Busy Bee Suz said...

Prayers and strength to you all during this time. She is a beautiful little angel. XOXOO