Sunday, April 13, 2014

Sunday update.

We are in a bit of a holding pattern here...and I don't mind one bit.

Rebecca spent the day entertaining visitors - my parents and my brother came this afternoon and they brought Peter and Sarah.

Baby girl loves it when we get her out of the warmer, swaddle her and hold her. It's always a production but so worth it to get to snuggle with her. And when we are holding her she tries to open her little eyes to get a look at who's holding her.

When we put her back in the warmer and the visitors are gone, we sit be her side and hold her tiny little hands,  massage her long feet and rub on her soft strawberry shaped head and whisper to her that she is loved.

The nurses let us change her diaper and take her temperature every two hours. And we know how to work the suction machine so we can help her get rid of all the saliva that has no where to go. And we are going to help give her a bath tonight which thanks to all the equipment and tubes and wires probably won't involve an actual bathtub.

Rebecca can't cry because of the tube down her throat but we know when she's upset. Her brow furrows,  her back arches, her arms flail and her feet kick. She may be the quietest baby in the NICU but we always know when something isn't right.

We have been revueeing our options and we aren't going to put in a feeding tube and tie off the trachea/stomach fusion. There are a lot of risks and potential downsides to that.  We also aren't going to remove her from the ventilator and other machines and watch her wither away either.

Instead we are taking a more middle of the road approach. We are hanging back, keeping her breathing and fed and we will just see what baby girl does.

If she starts to go on her own (which will most likely be the case due to the chance of fluid filling her lungs or air in her stomach bubble causing the stomach to push on her lungs) then we will make sure she is as comfortable as possible and love her as long as we can.

I think this approach  leaves the door open for God to show his power and his might. We are allowing her to live.  And if he wants to jump in with a walk on the water, feed 5000 people with 5 loaves and 2 fishes, raise Lazerus from the dead miracle then we will willingly accept that! But if that's not his plan then we will accept that as well.

And I guess, ultimately, that's what saying yes to God is all about.



32 comments:

Leslie said...

Praying!

Angela Nash said...

What an absolutly beautiful and faithful witness to God's love. Prayers for you all.

Christy from fountains of home said...

She is so beautiful Beth. I continue to pray for your family. Your love and courage are such a gift to your daughter.

Unknown said...

How beautiful you look together!

Alex T. said...

Still Praying!!!

Madeline said...

Such a beautiful post. I am thrilled she's getting the snuggles she craves. Not that I'm sure any of you mind the snuggles one bit! Praying so hard for her!

Mari said...

Thanks for your regular updates. You are all frequently on my mind and in my prayers.

Rebekah Es said...

This is truly beautiful, Beth! And I was so filled with joy to see you holding precious Rebecca. You are an example to follow.

Joel and Lee-Anne said...

I want a miracle for her, for you, for all of us who so much want to see God's awesome power revealed right here right now. It would be incredible. I'm praying the incredible over your family.

Love, Lee-Anne (a Louisville,KY friend of Kim H)

Aimee said...

What a sweetheart she is! And you are a beautiful person inside and out, Beth. Your face is glowing in the picture with Rebecca, and she looks so peaceful with her mama. Still praying for you all!

PS: hope you are feeling well after your surgery!

Tammi Humphries said...

Amen sister! Both of you ladies are beautiful!

Mary Lenaburg said...

You are such a beautiful witness my friend. LOVE her well and for as long as God allows. He is with you and Rebecca. Know that you are being lifted in prayer and surrounded by one prayer warrior after another.

Joy Beyond the Cross said...

I love, love, love, love the picture of you two together! Praying for a miracle over here as well!

jennbenn said...

What a beautiful post. Praying, praying for your sweet daughter and all of you!

Evden said...

What a beautiful picture of you and your sweet baby girl! Praying.

Erica Saint said...

Beth, the picture of you and Rebecca is beautiful. Praying for Rebecca and your family.

Kay said...

Your girl is beautiful and so are you. Thank you for updating. I will keep praying for you as you care for your Rebecca.

Jessica said...

You both look so beautiful! Where did all that dark hair come from? Prayers and love for you all.

Rebecca Frech said...

We are offering up #4's weakness for Rebecca's strength. Hang in there baby girl!

Beverly Michael said...

I am so glad you have gotten to hold your little one. I personally know how hard this is on you. I truly believe that no man can determine our time....only God....Dr.'s have the ability to help thru terrible situations but they can do that because God guides their hands..I will continue to pray for all of you...I pray God wraps his arms around you and you fill his love thru the prayers that we send up.

Micaela Darr said...

What a rock star little Rebecca is. Praying for a miracle, and I'm just in awe of your peaceful acceptance of God's will. Whatever the outcome, your rewards will be great. Hugs and so so many prayers.

Elise said...

Continued prayers, dear Beth. You and your sweet Rebecca are just so beautiful...what a radiant witness of God's love. May God bless you abundantly.

Billie Jo said...

Thank you for sharing your sweet babe with us, my friend!
She is beautiful...
And you? Stunning. Hope you are feeling well...recovery from a C-section is difficult...may God bless you with the strength you need...
Prayers for you and your family. Prayers for sweet Rebecca.
You my dear friend ... Are an inspiration. : )
Snuggle that sweetness!

Alpha & Omega Design Team said...

Hi! I just found out about you from a FB post on my FB. I don't know if my friend knows you or just heard about you and your family so she posted just to get more prayers going up. I just prayed for that special beautiful little baby. I prayed for LIFE and a healing touch from God. I prayed for WISDOM for you and all the doctors involved. Then, I visited your blog to read more. Oh my! My heart goes out to you and I honestly had tears streaming down my face as I read many posts...and on top of all this, you have the news of your husband's brother. I have indeed prayed for him as well. I have seen God do mighty miracles and I am putting my faith with yours! However, I also want you to know that your testimony of endurance and trust in God through ALL of this...is touching many lives I am sure. It is amazing! Many would turn away possibly after going through so much, but YOU keep your eyes on Him and continue to TRUST Him. Just know you are amazing! I will continually be lifting all of you up in prayers...as I know so many others are doing as well. God Bless you!

Alpha & Omega Design Team said...

Just realized she (my friend and old neighbor) must know you...you are in NC!!!

Lerin said...

God bless you and your beautiful baby. I am thinking of you all the time.

Colleen said...

That picture of you two together is wonderful. I think you and Dan have chosen well, and now is time to let go and let God...work a miracle!

Toby Booker said...

God's love and peace to you and your family. I cannot imagine having to make the kinds of decisions you are having to make. You are in my prayers right now. She is beautiful.

Amelia Bentrup said...

Beautiful picture! Prayers

Lucky as Sunshine said...

Beautiful picture, glad you are able to spend so much time with her & hold her.

Ana said...

Thinking about you and Rebecca and praying every day.

Laura Pearl said...

This post made me cry. Your little girl is beautiful, and her life is so important. And your faith in God's will in all of this has been so inspiring to me.