Four Weeks and a Praise Report!

I don't have much time as little Miss Hope is super cranky at the moment, but I wanted to take a minute and give an exciting update.

Our test results still are not back and honestly I am ok with it. God has really been working on me in the last few weeks and I am just praising Him for each good day, knowing that no diagnosis can define her, only God can. We do need answers to be able to best care for her and they will come but we are just trusting God's plan for her.

That said, she is FOUR WEEKS OLD TODAY! I will try to get pictures posted later, but this week she had her first bath which she did not care much for, and today she had her first trip to the local zoo!

Now for the excellent news! I am doing flips as I type this, (well not literally, I don't really think that is even possible) but for the first time, tonight Hope has NO bandages on. Her blisters are healed and she has no new ones. I have no idea what the future holds for her but I am praising God with all I have for doing this for her! Thank you all for your prayers. We are just so thankful right now that she is doing so well. NO bandage changing tonight! YAY!

Thank you Lord for the gift you have given us in Hope, she as each of her brothers have, is teaching us so much and drawing us ever closer to You! Children are such a gift! We thank you for blessing us again!

Our Birth Announcement

Since I cannot send one to each of you I thought I would share this adorable announcement my friend Ginger made for us. Check out her work at www.framesofinfinity.com

More Pictures

Hope Happenings...

Well, we are finally settling in and getting used to having Hope here. We are a little less afraid to get out and about and are having fun playing dress up a little bit. We have found a couple of pairs of mittens that work nicely and it has given us a little more freedom in the wardrobe area so look out! We still have no new blisters to report and the old ones are nearly healed. We are praising God for this. We have NO idea what the future holds and the test results are still not in but we know that only God can explain what is going on here. We are trusting in Him and loving this little girl with everything we have.

She is definitely getting bigger and asserting herself more. She likes to be held and always loves to be the center of attention. Holding her in one arm while multitasking just will not do! Tonight she will be getting her first real bath and we are assuming she will dislike it because she hates sponge baths, but we will see. Today is her first day in her little swing and it gave mommy a full twenty minutes of time to upload some new photos. She is waking up now, so that is our update! Enjoy the pics!

Loving on Hope

Thanks to Ginger for shooting these great photos when she stopped to meet Hope last weekend. If you are in the Pittsburgh area and are in need of a photographer, check her out at Frames of Infinity!

Three Weeks

I can hardly believe Hope is three weeks old today! Time flies when you are having fun! I want to take a moment and thank you all again for your prayers. I have made some serious progress in the "worry" area of life. (Post on my thoughts on worry to come) I had really become complacent to some things, chalking worry up to something normal, natural and ok, and honestly it is what it is and it is allowing Satan to have a stronghold. I have tried to commit myself to fighting that fight harder and not just allowing worry to take over. Worrying is NOT trusting in God. I have really been able to let a lot of that go, not to say it is not still a struggle, but I am so enjoying being the mom to these three amazing kids and wife to Howard.

We are all still just as infatuated with Hope as we were three weeks ago! We just can't get enough, but we have finally gotten out and about a bit, a little shopping, graduation parties, and church. Hope is meeting lots of great people and melting hearts everywhere she goes. She loves to eat. She is a great nurser and still is having a little trouble with spitting up but for now we are not worried as she is gaining weight beautifully and a happy baby. She has become so much more alert. The boys just love when she is awake. Benjamin especially cannot get enough of her, he always want to be by her and he continually shouts "she is so cute and tiny". He is such a helper. He loves to help with her bath and with washing her hair.

Luke loves to hold her and sing lullabies that he makes up himself ( I need to write some of these down) He sits next to her in the car and helps her find her pacifier and sings to her as car rides seem to stress her out. She loves napping with daddy and I think he loves it too! I happen to adore our late night chats. She loves to be read to. It doesn't really matter what you read, she just likes to hear familiar voices. She is still wearing newborn clothes and we have started cloth diapering! I must admit though I am a bit nervous after an incident we had yesterday where after removing a dirty diaper (at a picnic) and reaching for the new one, I was shall we say shot with a rather disgusting substance from about a foot away! I thought with a girl, MY wardrobe would be safe during diaper changes...WRONG!

She is becoming a better sleeper but much prefers to be held which I cannot say we mind. On the health front...she has not developed any new blisters and the ones she got in the hospital are healing nicely. Bandage changes are only taking five or ten minutes now which is much easier on all of us. We are praying that she continues to do as well. We still have no answers as far as the biopsy goes, but honestly I really feel God telling us that we need to look to Him for answers. No matter what the biopsy results say, she is here, she is doing well and she is thriving and we are just praising God for that. Not one of us knows what tomorrow brings but we are SOOO thankful for today! We are also so thankful for the prayers each of you have prayed on our behalf. We know that God hears, and we know that He has a good plan for our sweet Hope. Our hope is in Him and Him alone.

Happy 3 week Birthday Hope! We are so very thankful for you! (pictures to come)

Never Giving Up Hope

Ok, so mysuper talented friend Ginger took this photo of Hope last weekend and made this super awesome print so I could give it to Howard for father's day as I have not been out shopping and I am SO in love with this sweet baby girl! Look at that little face! PRICELESS! (The adorable bow was made by Tia you can check out her other stuff here)

Anyway I just wanted to share another picture of the sweet little one you are praying for and I must say that so many of our prayers are being answered. Hope is still not showing any signs of new blistering and the old ones are healing nicely. She has not been spitting up much anymore and I am thinking that issue had more to do with my diet than her. I have also been overwhelmed by the number of you who want to help us in some tangible way.

I have to say that accepting help has always been hard for me but in the past few years I have learned that sometimes God sends people to bless us and that in turn blesses them. I have been on both ends and am so grateful for the help we have received. We are a one income family and with the arrival of Hope and her needs I have been worried about finances and getting her the things she needs, but EVERY single need has been taken care of as it arises, we have been blessed with some cloth diapering supplies, bandaging supplies, dinner, soft blankies, encouraging cards, and sweet gifts for Hope and I cannot wait for her to one day look back on the story of her baby days and see how LOVED she is. Thank you all for being the body of Christ. Thank you for being His hands and feet and for carrying us when we are simply too weary to carry ourselves. Thank you. You have lifted our spirits more than you could know. Our hope endures! (literally and figuratively!)

"But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me. " Micah 7:7

Advice Please!

Hello Everyone!

Sorry it has taken so long to update since Hope's dermatology appointment. That trip to Pittsburgh wears me out and sweet Hope seems to be opposed to sleeping when the rest of the world sleeps so I have been napping every chance I get.

Anyway, there isn't much to update at the moment. The biopsy results could take up to another week. She had her little stitch removed and her feet are actually looking pretty darn good. She has a couple of new marks on her leg, not blisters, more like scratches, but they seem to be healing quickly without bandaging. There has been ONE new blister that appeared on her finger the other day. We drained it and you wouldn't even be able to tell where it is now. SO that is good. She is a good healer. The pediatric dermatologists are pretty sure she has some form of Epidermolysis Bullosa, but cannot confirm anything without the biopsy results. They feel at this time that if she does have it that it is likely a more mild case as she hasn't developed many new blisters despite us handling her like a typical newborn, and she is wearing regular clothes and they are not irritating her.

I have to say that when the doctors mentioned EB, I was angry. Isaac was tested for that as he had blisters at birth also. His case was worse, but his biopsy came back negative. I feel like through all the testing we have done, all we have gotten is misinformation. We were initially told that Isaac's issues stemmed from an infection he contracted inutero and that we would not have to worry about a recurrance, that was until Asher came and then suddenly it might be genetic. Now this. We were told he did NOT have EB and that we did not need to worry about that and now this. I have spent the past few weeks trying to sort my feelings out. Mainly I have been terrified. When you google Epidermolysis Bullosa, the information you get is not encouraging, in fact most if it is really frightening.

Our pediatric dermatologists have assured us that we should not panic just yet, as we do not know for sure if that is what we are dealing with and if it is, that there are MANY different types ranging from mild, where you would likely not even know a person had it to severe, which is what I was seeing each time I typed the condition into my search engine. There are also forms that seem to nearly disappear within the first year of life. So only time will tell.

That said, we are realizing that no matter what it is that Hope has, she is amazing, and she does have some special needs. We thought we were TOTALLY prepared for her and as it turns out we are not. This is where I am asking for your advice. There are a few things we need to get for Hope and I am a research it until I am blue in the face before buying it kind of girl. The thing is I don't have the time to research these days and so I am asking for your recommendations.

First, Hope loves to be held and close to us and I am thinking if I am ever going to get a thing done I am going to have to invest in a sling. I have a Baby Bjorn which I used with Ben and loved, and I have a Maya Wrap that an awesome friend loaned me, and I love, but I am thinking a sling might also be handy for her. So, mamas, tell me if you have a sling and if you love it and what kind it is!

Second, we had already planned on cloth diapering Hope, we have purchased an assortment of different products and have had a few generously given to us, but my head is spinning. I would love any cloth diapering advice and tips you all have as I have not done this before. We are going to go ahead and get some for her for now, which we hadn't done because we had disposables, but we are afraid the disposables might rub on her skin a bit too much.

Third, clothing...as you have seen in the picture of her closet, she has quite the wardrobe, but for now we are trying to keep her hands and feet covered to protect the current wounds and prevent new ones. I am having trouble finding hand mits for her that don't have harsh elastic around the wrist. We have been keeping her in newborn Carter's sleepers with the fold over mits, but she is quickly outgrowing them. So, do any of you know of where I can get some super soft no scratch mits for her little hands?

Fourth, she seems to be having a little trouble with reflux. None of my other children ever spit up and she does. I am breastfeeding and I DO have a strong let down reflex so I know she is gulping to keep up especially at first so we are working with that, it seems to help if we just burp her often and keep her upright after she eats. None of it seems to bother her at all she is a pretty happy baby and is gaining weight so the doctor is not worried yet, especially since she doesn't resist feedings at all. But it worries me and I would love any advice from seasoned moms I could get!

Ok, well I need to get my lasagna into the oven and make a salad with the boys. Please feel free to leave your advice in the comment section or email me at kbolte01@gmail.com!

PS If you have an extra moment, stop on by my friend Angie's blog and check out her latest post, it is pretty awesome and a beautiful testimony to God's good plan.

Tomorrow

(This happens to be one of my favorite pictures of Hope. She is practicing her Karate moves to keep up with her brothers I am certain.It always makes me smile.)

Quick Update Here:

I am overwhelmed with gratitude by the number of you who have reached out to me. I have been having such a tough time battling fear and doubt and it is so uplifting to know that so many of you are storming the gates for us. We are trying hard to live in the moment. Our days with Hope are so filled with love and joy! The boys are the best big brothers, and she is such a happy little girl. The only part of the day that I truly dread is still the time in the evening when we care for Hope's wounds. Bandage changes have been better though. We are learning more about wound care and supplies ad she is healing well. No new blisters have developed, but a couple of sore spots have appeared on her leg from scratching herself. We basically have to for now keep her in sleepers with hand mitts so she can't scratch herself and they aren't so easy to find.

We have another appointment in Pittsburgh tomorrow to get her stitch out. They may have preliminary reports or may not for another week or 2. Please pray for all of us as we will be spending another day away from the boys, much time in the car, which Hope despises, and is still uncomfortable for me. Please also pray for our hearts and for the doctors as well as for Hope. She is so tiny and helpless and it breaks my heart to see her hurt.

A Couple of Prayer Requests

Due to sheer exhaustion I don't have much time to post, but wanted to come and ask for your prayers for myself and for Hope. Yesterday was a frustrating day as I began having some concerning postpartum issues and ended up in the hospital all afternoon and evening. I am now on bed rest and hoping to be on the mend.

Hope is still doing well. She is up to 7lb 2 oz as of Thursday's doctor appointment. We head to Pittsburgh again on Monday for a dermatology appointment and to get her stitch from her biopsy removed. She has developed two more TINY little sore spots on her leg and though I am still so thankful that she is healing from her other blisters and so far things are looking to be on the mild side, my heart is troubled. I am trying so hard to take this one day at a time but I feel like I am suffocating here, just waiting for the next "issue" to arise.

I cried the entire time waiting for her well child visit because doctor appointments now make me nuts. I am trying hard to lean on God and trust in His plan, but I know that sometimes his plan is wrought with pain and right now my heart can't really handle anymore pain. I don't want to sound like a whiner here...I know how blessed I am, really I do and Hope brings so much joy to our family. It hurts me though to see her hurt. I would like to just be able to enjoy my family for a while without looming medical issues. Each time she coughs or hiccups I wonder if the blisters have developed in her esophagus and digestive tract. If she sleeps longer than two hours I panic and wake her. This fear that is taking over my heart is not from God and yet I have allowed it to creep in.

Please continue to pray for our family as we walk through this uncertain time. We know Who the author of this story is and that he is working here, may we just have the strength and endurance to rest in that knowledge.

Picture Perfect

Not much to update today, I just thought you all would like a "Hope fix", I mean I could be slightly biased, but she is pretty awesome. She is doing well, it has been a week since the appearance of a new blister and for that we are thankful. We are still just waiting for answers. The biopsy takes two to three weeks to get results and it has only been one so we won't know if it is EB or not for another week or two. Please keep praying for our sweet girl. I cannot wait for her to see one day how much she is loved and prayed for, though I am pretty sure she can feel it even now!

One Week

It is hard to believe, but yesterday Hope turned one week old! She is a delightful baby who makes all of us smile! We appreciate your continued prayers for our sweet girl. She is still doing well. She is eating well and sleeping well and is so much fun during her awake times. She rarely fusses unless she wants to eat and, well she has no patience there. No new blisters have developed at this point and we still would covet your prayers at bandage change time. We usually do it around 10 pm after the boys are asleep. It is getting better as we have better educated ourselves and invested in better supplies.

Each time Ben sees her he shouts "She's so cute, She's so tiny!" He also always uses her first and middle names, and Luke could hold her all day and sing her "baby songs". They are enamored with their little sister and take breaks from playing just to come and tell her she is loved.

We are enjoying having Howard home. He is off for the summer now since school is out and I have to say he has been a champ at caring for all of us. He really is amazing. He has kept up with ALL of the house work in addition to preparing meals and caring for the boys. We are so blessed to have such an amazing daddy for our family (who by the way has started his own blog ) He has so much to offer I know you would be blessed by his writing as he seeks the Truth.

As for me, physically I am doing well. I know the moment I have overdone it and have to back off. I am feeling a lot less sore though. I am pretty sure I am still high on adrenaline. I could just stare at sweet Hope all night long. Emotionally though friends, I am growing weary. I feel like I am still always waiting for the other shoe to drop. Some nights as I sit here loving on our girl, my heart is gripped with fear. I know too much. TWICE I have held my babies as they have left this world and lets be honest. I DON'T want to do it again. I want to hold her and breathe her in and dream about pigtails, dance class, and curfews, NOT wonder if how I am holding her is going to cause a blister. I want her brothers to be able to love on and explore her without me near tears worrying they could hurt her. I want to tickle cute baby feet, not change bandages.

All that said, I know how immensely blessed I am just to have Hope, she is here and she is thriving. I do assure you I cherish every minute and love her for exactly who she is. I trust that God has a plan and that it is good. Maybe I just need a minute to be human, because I am just plain tired of everything being hard. I am never very good at waiting for answers and in the meantime I have a tendency to do my own research and find the WORST possible scenarios.

Anyway, we are all doing well and enjoying each other. Please continue to pray for Hope and for my heart. I know this fear is not from God and I am fighting it with everything I have, but some days I do grow weary.

How's Hope?

Thank you all so much for praying for sweet Hope! Look at that face! Is she not scrumptious?! I am happy to report that she is doing well. She is a pleasant baby who sleeps a lot and nurses like a champ! The boys are just absolutely loving her and our house is overflowing with sheer joy. I never thought I would be so thankful for late night feedings, our alone time in the quiet of the night is such sacred time for me. I am just loving her to pieces and honestly, not sharing her very well.

As for her blisters, we are praising God that NO new ones have developed since we were in the Hospital on Wednesday. Her left foot has only one small blister that seems to be healing nicely, her right foot on the other hand is quite painful. She has three larger blisters that ARE healing but are very raw, and at the edge of the one is where the did the biopsy Thursday so she has a little stitch there. None of this seems to bother her aside from at bandage change time, which is heart wrenching for all of us. We would greatly appreciate your prayers for bandage change time. Howard has been so amazing, though I know it is so tough for him he has really taken charge and I provide the comfort while he does the "dirty work". I am so thankful for him!

As for me, after Thursday's trip to Pittsburgh I was quite sore and it has taken me a few days to recover from that. I am doing well, and Hope and I are blessed to have the three men of the household taking care of us. We are taking it easy and just hanging out. Hope and I watched our first chick flick together the other night. I can't say she was impressed.

So, thank you for praying, your prayers are being felt. I have felt so encouraged by your prayers and messages. Thank you!

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!

Hope Amelia Bolte

I am sorry it has taken me so long to update, it has been a whirlwind of a few days, but sweet Hope Amelia Bolte was born Monday June 1 at 2:22 pm. She was 6 lb and 13 ounces and is just beautiful. I will share pictures and stories of the day soon.

For now friends, I am coming to you again with a heart broken and full of fear. Her apgar scores after birth were 9 and 9. She is doing great, but it seems that she has developed some nasty blisters anywhere friction has happened on her skin, where her hospital bands were, where bandaids and tape have been her skin blisters and then is just raw. Her brother Isaac had these blisters and ultimately could not even be touched because he would blister.

We do not know anything yet and we are headed to see a specialist in Pittsburgh tomorrow. Please pray for our new girl. My heart aches to think she is in pain and my body is still broken from surgery, though I was discharged a day early and will be traveling to Pittsburgh tomorrow. We are exhausted and trying to recover and enjoy her all the while fighting the fear that something is once again wrong.

I am just reminding myself that God is indeed in control, that none of this is a surprise to Him and that he has good plans for our sweet Hope!

Forever and Ever Amen

With all of the baby talk, I want to be sure to take a moment today and thank the Lord for the gift he gave me 8 years ago today in my best friend and husband Howard. He truly is Heaven sent and I still sometimes have to pinch myself that I get to be with him forever!

Fun Facts About our Wedding:

* It was held at sunset at the Sunset Inn, overlooking Lake Erie

* It rained ALL day, cleared off for the ceremony and rained once we got inside for the reception

*One of our head table centerpieces caught fire and my uncle put it out with his hands!

* I had to be given a glass of wine by the photographer so I would "chill out", my OCD took over that day

* Our colors were lilac purple and daffodil yellow

* Our cake tasted JUST as delicious a year later when we got it out of the freezer!

* It was honestly the MOST fun day of my entire life thus far and we hope to do it again for our fiftieth!

* In lieu of smashing cake in each other's faces we smashed it in the faces of our maid of honor and best man...it was pretty funny!

* I dedicated my wedding bouquet to my Grandma White who raised me, it was a sweet moment. I love her so much!

* In just a few months (Howard's sister is moving to Texas) only ONE of the people in the wedding party will still reside in PA, though they ALL started out here. :-) We miss you all!

And I am ending this post with our wedding song. It says it all! We had SO much fun dancing to it!

Forever And Ever Amen

Randy Travis

You may think that I'm talking foolish

You've heard that I'm wild & I'm free

You may wonder how I can promise you now

This love that I feel for you always will be

You're not this time that I'm killing

I'm no longer one of those guys

As sure as I live this love that I give

Is gonna be yours until the day that I die --

oh baby

Chorus...

I'm gonna love you forever,

forever & ever amen

As long as old men sit & talk about the weather,

As long as old women sit & talk about old men

If you wonder how long I'll be faithful

I'll be happy to tell you again

I'm gonna love you forever & ever,

forever & ever amen!

They say that time takes its toll on a body

Makes the young girls brown hair turn grey,

But honey, I don't care, I'm not in love with your hair

And if it all fell out well I'd love you anyway

They say that time can play tricks on a memory

And make people forget things that they knew

But it's easy to see its happening to me

I've already forgotten every woman but you

Chorus......

Just listen to how this song ends

I'm gonna love you forever & ever, forever & ever

Forever & ever, forever & ever AMEN!