Thursday, June 4, 2009

Nothing's Gonna Steal My Joy!



Could she BE any cuter?
Daddy wore a pink shirt in her honor!


Such proud big brothers. They cannot get enough of her!


Mommy, blissful in recovery.



First I want to thank each and every one of you for your prayers and well wishes for our family. They mean more than you could know. The past few days have been tough for me. Though Hope is doing well, my heart has been sick with fear. It is so good to know so many people are storming the Gates of Heaven on our behalf. I am so humbled.

I have been overwhelmed with the sheer number of comments and emails you have sent and it has truly lifted my spirits in ways you could not even imagine. SOO...now that I have the attention of SO many people, allow me to share my sweet daughter with you!

She is just amazing and has brought so much joy to our lives already. We know God certainly hand picked her for our family! We are so excited to have her here.

Now I know many of you are wondering how our appointment went....so here is what I know and how I feel in a nutshell:

She was born without a mark on her. It was the day after her birth that the doctor noticed the first blister on her ankle from her name band. He brought it to our attention remembering that Isaac had similar blisters. At that moment my heart sank. I had been on such a high thinking that we were headed for easy street for a while and then my dream of "easy street" came crashing down yet again.

The next day he checked her again and no new blisters had developed. He said we would just keep an eye and that we would be referred to a dermatologist to be safe. Then, the nurses came and got her to do some tests. I asked them to please not use tape or bandaids on her skin as we knew the tape caused irritation.

(Enter extreme frustration) The nurses did not listen and used both tape and a bandaid. Two more blisters appeared almost instantly. Now, I was in a panic and angry that no one had listened to me. We then made a sign on her bassinet that said NO TAPE OR BANDAIDS PLEASE.

We spoke with our pediatrician before leaving the hospital yesterday and he seemed optimistic. He had mentioned EB or Epidermolysis Bullosa but didn't think it was a possibility as we had had Isaac tested for that and the results were negative. He made us the appointment that we went to today.

Today, we met with two great pediatric dermatologists who work for the Children's Hospital of Pittsburgh. They were encouraging and great but they are really thinking EB. Interestingly they are very surprised and even annoyed that we have not already (Howard and myself) been through genetic testing and they are referring us to the Cleveland Clinic for genetic testing. They are really thinking that there is a genetic disorder that we carry that includes the EB and the brain abnormalities. They are thinking it could be an X linked disease which would mean that a female child would not get the disease in it's full form so that would be Hope's case. Where the disease proved fatal for Isaac and Asher it would not necessarily for their sister.

As of now, Hope has blisters on her feet and a couple tiny ones on her fingers. She doesn't really seem bothered by them until we have to change the dressing on them. IF in fact she has EB there is a huge spectrum of severity of the disorder. Some children are mildly affected and even "grow out of" a lot of the blistering, while others have a debilitating form that can be fatal. They are thinking that IF she has this it is more likely on the mild end of things as her blisters seem to be localized. We shall see.

Now all that said, and really that is all nothing because we won't know for two to three weeks what is really up as the biopsy results will not be back until then...I have been very frustrated. I have in fact been allowing this looming diagnosis to steal the joy from my heart. I have been missing out on the blessing the Lord has placed in my arms because I have focused so much on the problem rather than the perfection.

Friends, God and I had a heart to heart on the way home from Pittsburgh today. I whined and moaned and poor me -d and God listened and then as I looked into the beautiful face of my fifth baby he reminded me that He chose her for me and me for her. Children are a gift. Not just some children, not just children free from disability, all children. She is my gift. She is perfect. Just as she is. Sitting around wishing for the "perfect" babies others seem to have is not going to do me any good. I need to embrace the perfection right in front of my face and not waste another minute.

I have no idea what the Lord has in store for Hope. What I do know is that whatever plans he has, are good. She is just as perfect as every other one of His creation. He knitted her together just the way he wanted her. We will embrace whatever that is and love her with everything we have.

We are hoping that Hope is healed from this skin problem, but we know that no matter what happens, God is in control and he will use this for His good purpose and we are trusting in Him and holding onto that promise.

Please continue to pray for Hope's healing and for our family. I do believe He hears us and I have never felt more loved or supported and am so thankful that Hope is already so loved and prayed for!

136 comments:

Susan said...

Praying for you and Hope, Kristy! God is good. Don't let your fear of the unknown steal the happiness and joy you have of becoming the mother to your first sweet girl! She is beautiful! Take care.

Susan in NC

Tracey said...

Hope is a gorgeous little girl - and what a beautiful name.

You are in my thoughts and prayers during these hard days ahead as you await news.

iheartbowheads.blogspot.com said...

I am crying and praying as I read your words - you and your family will be lifted up in my thoughts and prayers daily and I just want you to know how brave I think you are and to give you a big huge - you go girl - for not letting anything steal your joy!!!!!!!! You listen to the Voice of Truth and nothing else.

Sweet dreams

Holly

Mike and Molly Spivey said...

Found your blog this evening through little Jonah's blog! Praying for you and Hope!!!

Lisa Worthington said...

I have just discovered your blog and story after arriving here from MckMama's blog. Please see the blog of one of my friends, Patrice, www.patriceandmattwilliams.blogspot.com, whose son Jonas has EB. Praying for your family and your darling little girl.

Lisa Worthington said...

I have just discovered your blog and story after arriving here from MckMama's blog. Please see the blog of one of my friends, Patrice, www.patriceandmattwilliams.blogspot.com, whose son Jonas has EB. Praying for your family and your darling little girl.

Jill said...

she is absolutely beautiful and perfect just the way God made her. Praise Him!
i cannot remember how i found your blog, but am continuing to pray for you all.

Megan said...

She is absolutely BEAUTIFUL! Congrats. I'll be praying for her and your family.

dolores said...

She is absolutely perfect. Congratulations!!!. Praying for Hope's healing and a happy healthy long life for her. Oh and did I mention she is adorable!!.

Diana said...

She is such a beautiful little girl just the way she is! Your courgae and HOPE through all of your experiences is definitely uplifting! You are an amazing woman and have knit an amazing family and you are right that God chose your little girl especially for YOU and YOUR FAMILY just the way she is! I found your blog through McMamma's and I want you to know that you are in my prayers and that I hope He heals your sweet little girl and just remember to not lose HOPE and SIGHT of what He has in store!
May God continue to bless-
Diana

Kellie said...

Visiting from MckMama's...praying that God will send peace to you and your beautiful family!

Kellie said...

Visiting from MckMama's...praying that God will send peace to you and your beautiful family!

Jenny said...

Hope is such a precious baby girl...you are truly blessed! May you find strength when you need it and enjoy every moment you have with all of your children. You are in my prayers!

John and Roz said...

Still praying in Arizona. If it is EB and you're in Pennsylvania you might also want to talk to Dr. Howard Pride of Geisinger Medical Center Clinic in Danville, PA. He runs a camp for kids with skin disorders and might be able to get you in touch with other parents going through the same thing. I don't recommend the camp, for many reasons you can email me about, but I was a counselor for 5 years and my husband even went for one of those years. Just might help to meet others that have/are going what you're going through.

LeeAnn said...

Congratulations on baby Hope! She is a joy and blessing from GOD.

California Isoms said...

Wow. That was beautiful. Found you through MckMama. Thank you for sharing. Praying for you and your family...

Kristina said...

Praying for you as you figure all of this out. Praying for Hope's healing.
Congratulations on such a sweet baby girl :)

Anonymous said...

She is just beautiful!! You are so right about being "perfect" in the worlds eye. Our Lord makes ALL things perfect and no matter what we may think to Him, He left nothing out and she is just the way He wants her PERFECT. You do not know me but I have been blessed by you and your family.... and I will remember you and your sweet family in my prayers and if we never meet this side of glory thank you for loving Jesus the way you do through all your hardships, and know that HE will bless that. Romans 8:28
Because He lives my friend~ Found you through the williams family

ShEiLa said...

Oh she is precious and adorable and I so wish for all to go not just well... but perfect for her sake and yours.

ToOdLeS.

ps. would you give her a love for me... a very wanna be grammy sheila... thanks.

Devon said...

kristy - she is beautiful! and i can understand your frustration. know i am praying for you and little hope...

keep your head up. you are an amazing mommy!

happy gram said...

kristy, she IS beautiful! i am so sorry you have to experience yet more WAITING! what a blessing that already you are realizing to enjoy each minute NOW - no matter what you learn 3 weeks from now. sweet, sweet little baby girl in pink! love on her and talk to her and smell the sweet aroma of God's gift to you! love you kristy! praying, jan

Anonymous said...

Oh, Kristy, she is so beautiful! We are praying for you and her (and your boys)! Beth Pamer

Rachaellh said...

I wanted to let you know that I am praying for little Hope. She is so beautiful. I pray that the doctors will have answers for you soon and I pray that God will provide you comfort and peace while you wait. My daughter passed away 3 years ago and God blessed me with my second daughter 17 months ago. I imagine that you are on an emotion roller coaster right now, but I know that God is holding you up right now and He will provide you the strength that you need.

Sara said...

Kristy,

You have some many comments, I will hope you read this one. It sounds like your daughter has a rare skin condition called Epidermolysis Bullosa. I have this skin condition as do 2 of my 4 children. PLEASE check out my web site www.garrettshouse.org/guide

If your daughter does have EB it will help you for the first few days and weeks.

There are other web site: www.debra.org which is the EB organiztion here in the US. They have a nurse you can talk to or your daughter's doctor can talk to.
Also www.ebnurse.com is a wonderful site as well!

CHOP is a great hospital and they have EB friendly doctors.

As for your son Issac, was a biopsy done or genetic testing done on him? Biopsies are negative or inconclusive all the time and it depends on who does the biopsy and where it is sent and how/who reads it. Genetic testing can only be done if you know what to look for in the first place. There are hundreds of EB mutations in different genes and the lab that does the testing (only 1 in the country www.genedx.com) has to know which of the 3 forms of EB to look for.

There are 3 forms and its varies in severity. My daughter and I were born with EB Simplex Dowling Meara. Its the most severe form of simplex, but our got better as we got older. My daughter is 6 now and to look at her you'd never know she had EB! I also had a son 4 years ago born with EB but he got an infection when he was 10 days old and we lost him two days later. He is now running around Heaven with your two angels!

Please feel free to email me saradenslaw@gmail.com with any questions of if I can help in anyway. Your family and friends are welcome to email me as well. I talk to a lot of grandparents, aunts and friends of the family in the first few weeks since the parents are so busy with just general baby stuff on top of the EB.

You may get comments from other EB families and it may seem overwhelming or bothersome, but everyone is just trying to let their support and help in anyway they can! They have all been in your shoes and just want to make your journey through EB, if she does have EB, a little easier for you to navigate through...

Take care
Sara Denslaw
www.garrettshouse.org

Mommato2miracles said...

Praying for you and for beautiful Hope. I can only imagine the sorrow you feel over the loss of your two sons, my first child went to be with the Lord as well, I now have two children who have each had some health issues. And I too have thought about the "perfect (or HEALTHY) children" that others seem to have, I just wanted to thank you for reminding me, that God chose ME for these miracles, that He blessed ME with them, and I am forever grateful!!! God bless you and yoru beautiful family!!!

Corie said...

She is BEAUTIFUL!!! I am praying for you my friend. Praying that the Lord would give you peace and that He would continually be reminding you of the perfection in baby Hope. That He would put a hedge around you and that the other thoughts would be fought! I am sure you are tired, yet so incredibly thankful. Its when we are tired and down that the enemy tries to steal our joy. I will be on my knees often throughout the next few weeks and beyond. Sending you a big hug.

k8wizzo said...

You and your entire family are in my prayers! Hope is so adorable. Enjoy your beautiful baby girl!

kdliberty said...

Praying for you.They need to also rule out an autoimmune disorder.They can cause EB like blisters and the problems Isaac had.A really good pediatric immunologist should know.

Granna said...

Your sweet baby Hope is beautiful! Take your thoughts captive when the fear creeps in. God loves Hope even more than you do and has a plan for her. (I know you already know that!) Praying for Hope in Texas.
Donna

Pipsylou said...

I think I guessed "Hope!" - oh, what a beautiful, fitting name!!!!!!! She is GORGEOUS! praying, praying, praying...

Guilty Mom said...

I just spent a few hours reading back through your story. Amazing. God is good, isn't He? And yet it's so hard sometimes! Thank you for sharing all of this with us. Peace be with you and your family this day.

♥ Jess ♥ said...

We'll be praying.

Pipsylou said...

I am praying, friend. Praying, praying, praying!

Laurie in Ca. said...

Oh my goodness Kristy!!! She is more beautiful than I could ever imagine.:) She is a true treasure and gift from God to you and Howard. Designed just for your family. I am praying that your joy is not touched by fear and doubt as you look on the one we have all prayed for since you saw that plus sign on the stick:) I just can't express what all of this means to my heart. From where I sit, on the outside looking in, I feel a peace in my heart for your entire family Kristy and Howard. I believe with all my heart that all will be well with our God concerning Hope. All of the pictures make me smile and the boys with her are so precious. I can't quote the whole scripture but whatever is good, pure, true etc, think on these things. God has Hope and your family covered from all sides. And we out here are backing Him up with prayers. I love you guys and prayers continue 24/7 here in my home. May your joy overflow as you nuture this cherished gift. I love her.

Love and Hugs, Laurie

Sarah J. said...

found your blog through a tweet Mckmama sent out.

Hope is just beautiful. I will pray for all you! God bless and keep you.

Sarah J.

Anonymous said...

Congratulations!!! Praying for Baby Hope.

Sharon in Fla.

Sheryl said...

thanks for posting the pictures. you should have seen me trying to get a close up look at the one on facebook!

she sure is beautiful! love your attitude. enjoy what God has given you. (boy, i need that for myself)

love ya kristy!!

Cathy said...

Please know that we will continue to pray for your pink lil bundle of perfect perfection. Blessings to your family.

Vera said...

No, she couldn't be any cuter ♥ Praying for your sweet baby girl!

Jess and Krissy said...

Praying for you guys!

Gabbin' with Giff said...

Super stinkin' adorable!! Girls are so much fun! I'm so happy for you and praying for no EB. Soak up every moment. What a blessing!

Nieman Family said...

praying for you and your entire family...God bless...Love the name!

asplashofsunshine said...

SUCH A GORGEOUS FAMILY! You have a fabulous attitude. Hope is pure joy and happiness, and mighty gorgeous like her mommy too. :) Love the pink shirt that daddy is wearing. Little Hope is going to have a hard time unraveling daddy from around her finger. HAAA! Keep the camera going. Again, CONGRATULATIONS!

Anonymous said...

I am praying for you and Hope!! She is just beautiful and she is a perfect gift!! :)

Tressa

Megan said...

Praying for your family and precious little Hope!!

Hilary said...

Oh, thanks for sharing those pictures!! My heart melted. She is so precious and seeing her with Luke and Ben?? Adorable!!
I loooove the name you picked out for her - Hope. We always have hope. Our hope is in the Lord! What a comfort that is.
I continue to pray for you all. I continue to proclaim healing over your little girl and that these blisters will disappear and NEVER come back.
May your heart be filled with joy as you enjoy your daughter!
Blessings and prayers always...

meela said...

You are so so brave Kristy. You and Hope and your whole family are heavy on my heart tonight. Heavy in joy in the absolute beauty of Hope and sadness that you have to deal with the fear of the unknown once again. I think of you all the time as I pass through similar experiences as you. I am inspired by your faith...and I never say that lightly. I will probably be thinking of you even when I am in labor remembering your courage to make the choice to be joyful instead of fearful, accepting instead of raging. When we would all grant you the right to rage, you choose again to trust and live your life with as much grace, courage, and joy as you can muster. I thank God for you and of course I am praying for you.

Kari said...

You don't know me... got the link from MckMama's blog... but wanted to say CONGRATS on the birth of your daughter... and let you know that I prayed for your family tonight.

Blessings to you,
Kari

Anonymous said...

I've been reading your blog since before Asher was born. He and I share the same birthday and I prayed for you daily. Congratulations on the beautiful baby girl. Maybe she just has sensitive skin....I'm 50 something and I still break out in itchy blisters from tape and band aids....have all my life...Enjoy those children and I'll keep right on praying for you.

Freda from Arkansas

pb and jazz said...

She is beautiful! Still praying!

Amy said...

She is BEAUTIFUL!!! I am praying for you and Hope. Though I have never lost a child, I can empathize with the fear you are feeling at this time. God is being flooded with prayers for Hope Amelia Bolte. God Bles you and your beautiful family!

In Christ's Love,

Amy S in KS

Megan said...

What an absolute blessing-Hope! It is exciting to watch God give after haven 'taken away" as the scripture says. I sit and watch you and am vicariously blessed!

Father- I lift this dear family yo you. Hold them close and show them just how much it is that you love them. I pray for mighty preotection around, in, above, below and all around Hope and her "tiny" days. Bless this family with confidence in you and your plan for them!!!!!!!

Peace be with you lady!
Megan

megan said...

What an absolute blessing-Hope! It is exciting to watch God give after
haven 'taken away" as the scripture says. I sit and watch you and am
vicariously blessed! Megan

Mashel said...

Oh Kristy she is absolutly beautiful. What a wonderful gift God has given you. I love the looks on all those boys' in her life. It looks as though she already has daddy and her brothers wrapped around that tiny little finger of hers! What a sweet girl. I will be continuing to lift all of you up in prayer. Thanks for sharing her picture.

justlori2day said...

CONGRATULATIONS!!! Lots of prayers - and lots of happiness for you!

Anonymous said...

Praying for all of you and baby Hope from Washington state!

Queen Mumma said...

Praying! She is beautiful!

Rachel said...

So glad you updated! She is beautiful Kristy - an absolute, sweet, miracle.

Thinking and praying for you.

Rachel in VA

creative gal said...

Praying!!

Anonymous said...

She is beautiful, just like her brothers. Today she is doing great. So appreciate the day. Try not to worry about thing you can not change. IF she is a good day, you have one to. Praying for you in Atlantic Canada .

Hugs and Smiles,
Lisa

Kelly @ The Beauty of Sufficient Grace said...

Sweet Kristy...your beautiful faith shines through this post. God's grace surrounds and carries you...his beautiful, amazing, all-sufficient grace. Praising Him and rejoicing with you for your beautiful gift...sweet Hope. And praying for her and for all of you...

Much Love,
Kelly Gerken
Sufficient Grace Ministries

my3sons said...

Kristy,
She is just precious! Her with the boys is a beautiful sight! I pray that you get the answers you are looking for. Your attitude is amazing and I know that things will be ok. Will continue to pray for your family. Katie

stephanie said...

She is perfect, oh my goodness she's deleicious. These are your moments, enjoy them. All our prayers to you. Thanks for posting and sharing some of your beautiful moments!

Kim said...

Praying - she's gorgeous!

Becky said...

She is delightful! Praying that tests will indicate what the problem might be and that it can be resolved.
Enjoy!

Buffy said...

Kristy, I also have a child with an extremely rare chromosomal abnormality and I so know those feelings! Praying Psalm 139 over you and your sweet girl. Many days I would cling to those verses.

Blessings,
Buffy

Elizabeth said...

I'm visiting from MyCharmingKids. I went to bed last night praying for Hope, and I woke up this morning doing the same.

"But He knows the way that I take; when He has tested me, I will come forth as gold." Job 23:10 This verse was a comfort to me as we went through the difficult journey of infertility. He KNOWS. He CARES. And He VALUES the trial you are going through.

its so very cheri said...

Praying for your family. I lost 2 babies to miscarriage and can not even comprehend the grief one goes through when they have held that baby. We will continue to pray, as we do for Jonah. You should check out their blog.

Cheri
www.itssoverycheri.blogspot.com

Amber said...

Praying for you Kristy and your sweet family! Hope is simply beautiful!

Anonymous said...

Found your blog through Jonah's I am praying for you and your family

camoy said...

Hope is just a precious little bundle! I started to follow your blog just a few months ago and my heart has warmed so much to your story of all 5 of your children. My prayers are with you, your family and especially baby Hope! God will heal her, I believe! All our love and prayers!

LL said...

What a beautiful gift from God! I have been praying for your sweet girl and your family as you face this uncertainty. I will leave you with my 88 year old Grandma's favorite verse...
"For the Lord is good. A refuge in times of trouble, He cares for those who trust in Him." Nahum 1:7
The Lord bless you and keep you

camoy said...

Hope is a precious bundle of love. She is absolutely perfect! I have been only following your blog for about 2 months, but in that short time I have grown to love and pray for all of your 5 children. Our prayers are with you, your family and especially baby Hope. God will heal her, I believe in him. She's beautiful, lots of love and prayers for all.

Emily said...

Your little Hope is beautiful!!! I am praying for her healing & I am praying for your family!
Emily in Mississippi

Sara G said...

Hope is just adorable!
Love the pictures.
Thoughts and prayers are with you daily!!
Take care

Liz said...

What a beautiful baby!! Praying for you as you wait for answers.

Liz in Michigan

Charity said...

She is beautiful!

Rob and Amy said...

Praying for your family, Kristy. She is simply stunning and fearfully and wonderfully made!

ajc4ever said...

She is a beautiful little girl. ...and nope I don't think she could be any cuter. She looks kind of like Asher to me. I'm praying for peace for you guys while you wait for the biopsy results.

Angela

Diana said...

Here from MckMama's blog. Congrats on your baby girl. She is precious! Keep the faith.

Check out the following blog:

patriceandmattwilliams.blogspot.com

Their son has EB.

Praying for you!

AmandaC said...

She is absolutely beautiful. I think she looks a lot like you in that first picture. Thanks for sharing her with us.
We will continue to lift all of you in prayer.

our family said...

SHE IS PERFECT! What a beautiful little blessing. Makes me all the more excited to meet my sweet girl any day now. Will continue to pray that you are able to focus on the blessing and not let satan steal your joy. God has a plan to use Hope to testify of His goodness and healing and that plan is still the same whether she has EB or not. Praying for her healing and for you all as you adjust to having a new baby in the house. Those sweet big brother (and daddy) all look so proud.
Congratulations and as always
Hugs and Prayers
Rachel in PA

Miche said...

She is soooo beautiful! Congrats again!

Jessica mommy to Alex/ RTS said...

She is beautiful!

Kim (marygracesummons.blogspot.com) said...

Sweet Kristy,
first let me say - she is absolutely beautiful! It brings tears to my eyes just looking at her. I have been praying for you but didn't know everything that was going on. I will be praying for Hope's healing and for peace for you and Howard. You are so precious and your heart is so pure. I love you and Hope already!
With love and prayers,
Kim

Stuart and Tashia Uken said...

First Congratulations on your beautiful baby girl! We had 2 precious boys with EB so feel free to contact us if you get the results back saying she has EB. It definitely helps to talk to parents that have/had EB kids to get some helpful hints and suggestions. Beacause what works for one child may not work for another as there are so many different forms of EB. We are praying in IA for your family.

Tashia Uken
nyesda@hotmail.com

truelifeofjess said...

She is beautiful. I am praying for you and your family. Remember God does not give us more than we can handle.

God Bless!

Anonymous said...

Hope is just beautiful. Praying for you all as you wait for the results of the tests. Why do medical tests need to take so long?

Thank you for sharing your daughter with us.

Grandmaof6

Katie said...

Welcome sweet baby Hope. I have a 2 year old, Ella, with EB. We live in the Washington, DC area, but will actually be visiting my sister-in-law in Pittsburgh this weekend. We would love to stop by and talk with you, have you meet Ella, answer any of your questions, etc. My email address is katiegalex[at]yahoo[dot]com. We'll be praying for Hope.

Katie

Alicia said...

She is beautiful!!! Congratulations!!
Continuing to hold you all up in prayer!

amanda said...

She's pink and pretty! Congratulations on your new little baby Hope!

Gloria said...

This was my devotion this morning and I just wanted to share it with you. I will be praying for you and Hope for healing and answers.

With the LORD on my side I do not fear.
(Psalm 118.6 NRSV)
***********************************
When Sue's husband was seriously ill and undergoing surgery, she was filled with anxiety. "Oh, I'm so afraid!" she cried to a friend. The friend nodded, gave her a knowing smile, and then asked her this: "Do you know how many times the Scriptures say, 'Fear not,' or 'Do not be afraid'?" Sue shook her head, “No.” "It's a very curious number," her friend continued, "three hundred and sixty-five times."
Sue was surprised. "But that's . . . "

"Yes, one for each day of the year," her friend said, finishing her sentence.

There is one 'Fear not,' for every day of the year. A coincidence? Perhaps. Perhaps not. But God does not want His people to be afraid. "Why are you troubled?" Jesus asked his disciples, "and why do thoughts arise in your hearts? Behold my hands and my feet, that it is I myself: handle me, and see... And when he had spoken, he showed them his hands and his feet." Jesus wanted his disciples to know that it was all real. He was alive. Death had been conquered. The Gospel is true.

“Fear not.”

With Love,
Gloria

Amy Lynn said...

She is absolutely beautiful. Praying for Hope Amelia.

Hope T said...

She is so precious and beautiful! Congratulations!!!

Rebecca said...

Oh, Kristy. I can't imagine the heartache & fear that you must be going through. I am so glad, however, that God has reminded your heart that all children are a gift,. created wonderfully by His hand, picked especially for their parents. He chose Hope for you. & I will be praying for His peace for you in the days ahead....

Ruthanne said...

Congratulations! I've been following your story off and on through MacMama too, but just realised how geographically close you are!! I'm 20 from Cleveland Clinic so if there is ANYTHING I can do, please contact me.

dkhrjh@yahoo.com

Erika said...

She is so beautiful! Congratulations! I am praying so hard for you all!

Amanda said...

Praying for you!

Krystal said...

Praying for all of you! And, so glad to hear that Hope doesn't have many blisters, all things considered. Beseeching our Father on your behalf...

Anonymous said...

Rejoicing with you and praying for you!

Blessed Mom of 8 said...

Kristi,

Praying over you and Hope!

She is precious!

Big hugs and lots of love,
Jill

trishandwade said...

Hope is precious!! Her name is perfect, and I love seeing how "happy" she's making all of you. Been praying for months, and still on my knees for the both of you, as well as the Bolte boys! Congratulations and praise the Lord!

Christa @ Quintooples said...

Kristy...she's BEAUTIFUL. Congrats on your baby girl. :)

Cleveland is a much easier trip than Pittsburgh...for us anyway!!!

I REALLY hope you get some FIRM ANSWERS. If you are like me...I hate the waiting and not having a "name" for something...

We are going through the waiting game too...right now, so I know how nerve wracking it can be. (((HUGS)))

Prayers as always.

Joy H said...

Congratulations - she IS a beautiful blessing. Still prayin' in CA!

Mama4Real said...

I am thankful that everything else seems to be O.K. with her, and trust that this will sort itself out and your li'l angel will grow up normal, healthy and happy!

I spent a good 45 minutes last night reading through some of your blogs, looking for the story about Asher. I came across the post you wrote about "Standing on Holy Ground", and I bawled my eyes out as I imagined the insane pain you must have been going through, and then describing it like THAT. I am totally convicted, in so many areas of my life, as I read through your amazing dedication to the Lord in the midst of (hopefully) the worst storms you will face. Thank you for being so open and honest!

Sonnet said...

so nice and beautiful
congratulations

Sara said...

Hope is beautiful! Congratulations! I heard about your blog via MckMama and just wanted to let you know that I'll keep your family in prayer. I especially loved your words about how she was picked for you and you for her. God is so good, even when it hurts the most. Praying for grace abundant in these days.

Lori said...

Standing in the gap and praying for Hope and your family. She is beautiful.

Anonymous said...

you have such a beautiful baby girl there. I found your blog through Jonah's. You should really check out their blog at patriceandmattwilliams.familyblog really hope it isn't EB. In our prayers in NC.

Laurie in Ca. said...

It's just me stopping in to get my day's fix of "pink eye candy". She is just the sweetest and most precious little gift Kristy. Seeing her in Howard's arms, pink shirt and a glowing love, it melts my heart. She is in good hands, yours and Gods.
Luke and Benjamin are just the cutest big brothers. Keep holding on to all things good and I will be praying and trusting God for the joy you so deserve to keep overflowing in all of your hearts. She is here and she is home. Such a blessing. I love you guys.

Love and Hugs, Laurie

Heart4Adoption said...

Praying for you! I am so excited about this gift that God has given you!

Mama10EE said...

Bolte Family,

She is gorgeous, a sight for sore eyes for sure! Still praying for you all in the coming weeks. For now, enjoy the sleepless nights and your beautiful ray of Hope!

The Tellinghuisen Family said...

Kristy,
Welcome baby Hope - she is gorgeous! You really put things into perspective for me when you said All children are gifts. Even though I know that, sometimes we have to remember that. Today I was just thinking about how my son Aidan is such a gift, no matter what, even with his brain condition. And then I pull up your blog and see you saying the same thing. And I know our next baby is a gift as well, no matter what package he comes in! It is very important to remember the perfection, just as you said! And Hope is perfect!!

Wishing you rest, recuperation, and tons of joy as you get to know the newest bundle!

Love,'
Stephanie

Flip-flop Mama said...

Will say a prayer for you and Hope!

Shelby said...

Congratulations on this sweet baby girl. I am praying for your family!

Trennia said...

She is simply BEAUIFUL...her name is very meaningful.Praying for your family.

Tammy On the Go said...

I am so happy to meet her. She is beautiful and I cannot wait tohear more about her!

Alyssa said...

keep coming back to look at that sweet little miracle face...precious. love you, praying.

Kelli said...

Still praying for all of you!

Katie said...

Kristy- Hope is just GORGEOUS!!!
Praying for you all.

Melinda said...

She is absolutely beautiful, and so lucky to have such a great mother. Keep the faith and we'll keep your sweet Hope in our prayers!

JD said...

She is absolutely breathtakingly beautiful... Prayers are with you and your family!

connie said...

Yes, she is perfect. No, she could not be any cuter, and neither could you. :) And I love Daddy's pink shirt, and the big brothers doing what big brothers do best, holding and loving their Hope.

I am so happy for you, Kristy. She is perfectly made, and perfect for you. Rest, drink lots of water, and enjoy these joyful months and years.

Love you, sister.

Michelle said...

She is beautiful Kristy!!! I was so excited to see pictures of her! I continue to pray for you as you soak up these precious moments.

Susie (So Blessed) said...

How beautiful Hope is!
I have been praying, Kristy,
and I will continue to do so.
May you enjoy your newest blessing
and may both Howard and your heart be filled with God's peace. You have the assurance that you are all held tenderly in God's loving hands and that many of us continue to cover all of you in prayer.

Elisha said...

She is Beautiful!! Congratulations again! The more I hear the more Im thinking it may be what my friends daughter has... I know it is not EB... but I am going to find out more details for you... If you care to know :) She had skin problems for her first couple years...diapers really made it flare up...until they actually diagnosed it... and shes been fine since... This same friend just recently had a baby boy so she had to undergo more genetic testing to make sure the baby didnt inherit it - as I said before because if inherited it is fatal...and he was fine! Thank God. Take care of yourself and those beautiful babies of yours! Asher and Isaac would be such proud big brothers!

Anonymous said...

Hope is ABSOLUTELY BEAUTIFUL!!!! -- and her name brings tears to my eyes and fits her so well. Your whole family, will remain in our prayers.

Buttercup said...

Every prayer for sweet Hope!

Linda-PA Mom of 3 said...

Congratulations on your beautiful little Hope. We pray for God's wisdom as you bring her up and face what God has in store for you and your family.

Gibson Twins said...

Just wanted to let you know we're praying for Hope and your hole family. You will be in great hands at Cleveland Clinic (I used to work there actually and now live very closeby). I hope you get the answers you need and have lots of peace.

Rebecca said...

Hello Kristy. I happened upon your blog through another and have been following your story since a few months back. I have been praying for your family and little Hope.
I just had a little granddaughter born and I just can't imagine the feelings you must be experiencing.
I pray for strength and wisdom for you and your husband and for healing for Hope. God bless.

ANewKindOfPerfect said...

I am praying for Hope, and that the biopsy results will give you good news.

Katy said...

She is gorgeous....I was here a long time ago and came back after a long blog absence to see such a gorgeous new blessing! I am SO thrilled for you, and at the same time am asking God's complete healing for your little one. You definitely deserve to have all the worries be taken away from your heart so you can enjoy every moment.

Lynn said...

Found your blog through Kelly's Korner--am praying for all of you that God brings healing to Hope and strength and calmness while waiting for results. What a beautfiul baby Hope is--love her name!

kate said...

I somehow found this link to your blog. I am glad I did b/c I would love to be praying for you. Hope is beautiful! I was so struck by something you said- how you were wasting time hoping for a perfect baby. Some friends and I were just talking about how every child has something that isn't perfect. For us it is kidney and eye issues- neither fatal or much to complain about, but still a hurdle when you have to realize your child isn't perfect. None of us are! Which is perfect- all the more reason to need Jesus! Anyway, I just wanted to say that I totally understand what you are feeling and your description was perfect. I think Satan likes to attack us mommies in that way. We will definitely be praying for you- that you can focus on the joy- that's what kids do. They don't worry about upcoming tests- they just enjoy the moment. Hope you can do the same!

Rachel Dominguez said...

I am new to your blog. I found you thru Kelly's blog. I read about baby Gabe and Jonah that has EB. He is an amazing little guy and I am in deep prayer beginning today that that beautiful daughter of yours will be OK. Keep you chins up!!! No matter what happens, there has been a miracle happen and SHE IS HERE!!!! Alive and doing well.

Blisters or no blisters, she is here and doing good.

You will be in my very deep prayers from here on out!!!

Rachel (lee's summit, MO)
lovefor9.blogspot.com
luvfor9@gmail.com