Disappearing for 3 weeks = I owe y'all Bigtime!

To all of you who have been asking where the heck I have been, I am SO sorry. My heart has been grieving for little Kayleigh Anne Freeman, and I have had a hard time sitting down and writing about any of my own feelings when I know of what they are going through right now. Please keep Kayleigh in your prayers and still pray for a Miracle because we know what our God is capable of. Please keep Adam and Aimee, Allyson and Brandon lifted up as they walk through this valley, that God will pick them up and carry them through, as we know He will. We love you Adam and Aimee! You guys have been a HUGE inspiration to us and will continue to be. You guys have endured SO much and have never ever once given up. The only thing you gave up is YOURSELVES. On the playlist on my blog, there is a song called "The Glory of it all" By: The David Crowder Band. This song is on my heart for so many families in such times as these, please listen and be blessed. It's song number 3. If you haven't already, when you feel like you can, please read "The Shack". It taught me so much about how God is always near, and in your darkest hour, He will remind you of His goodness. So what, some of you might say? Goodness? What's so great about being good? Why can't He be "good" enough to save our deepest wounds from ever becoming wounds at all?

Ever feel peace?

Ever been high?

Ever taken a pain pill to get out of the excrutiating pain that you are in and then suddenly feel like you can climb mountains?





...Try Jesus.





I'll tell you, that's one drug I'll always try.




So, instead of letting my feelings out, I decided to do what you most likely want to hear anyway, and fill you in on V! Also, I am going to answer some questions from all of you and then open the door for questions in the future and maybe do a question/answer day every once in a while. Like, you ask along the way, and I will get a blog together to answer everything asked. Brent Riggs does this on his blog, as a lot of you know. I think it's a great way to communicate with our "Knees"! :)

First of all, Veiyah is doing SO great! She had clinics on Wednesday, April 22nd and guess what?? We got to go home afterwards! It felt weird actually. We were driving home and Jer said, "Well, what do you wanna do for lunch?" I said, "Oooh, we're in Iowa City, how about "The Vine"? He says "MMMhhhhmmm, we can take her to a bar/grill but we can't take her to church..."

doo ta dooooooo


'Oh! Veiyah's in the car?'


Usually when we are in Iowa City, she is in-patient and we are out looking for food and other distractions besides the hospital. :) I was GLAD to realize that she WAS in fact in the car with us and that NO, we could NOT go out to lunch. Saves us both heartache AND money!

We went up on V's feeds to 97cc's every 3 hours at 27k/cal formula, and with that we get to SKIP a night feeding.

PRAISE THE LORD I tell you....

Every 3 hours? Try it, I dare ya.

Okay, so a lot of you ARE doing that with your brand new baby. And I did too, but back when it was Madi and Selah, I'd just whip out my very own built in bottle and could do it anywhere, anytime. Veiyah takes the bottle,(not my personal built in one) which is GREAT! She takes about 40-70 cc's per time. She will not go to 97 yet though...so we DO have to Bolus the rest. So, her feedings are quite the process and take a good hour or more. So by the time I'm done with one, I'm on to the next.

Isn't she going to get fat, you say?


Well, I am more than happy to say that Veiyah weighs in now at 13 lbs EVEN! She is 25 incheslong and looks SO great!






Her eyes are still crossing at times, but very rarely. I wanted to show you how far they actually go in when they do/did. This isn't even all the way, but it will give you an idea...



Please continue to pray for strength in her eyes and for her brain to remain "normal".

Wanna see V pray? I know ya do...








Madi had her 9th birthday on Tuesday April 21st. One of her most favorite gifts, was her new cousin that was born the morning of! Sofia Morgan Styre graced us with her most beautiful self on such a great day! Welcome Sofia! We love you baby girl!






Happy Birthday to both Madi and Sofie! Madi had a great birthday and I'll post pictures next time I blog. :) Maybe even right after this one so I don't forget.

Madi and Selah got their haircut though, and wanted to show you! I LOVE their hair and think it suits both of them so well! Madi with her style and Selah with her age/tooth missing. ;) I'll definitely get a picture of her missing tooth with her new hair cut posted here sometime soon.













Oh I know you all probably think I don't even read your comments. I am so bad with following up with them! I do apologize for this. There have been many MANY questions in my comments and I want to make sure you all get them answered. I will answer a few that I remember being specifically asked, but please feel free to ask more so that I can make another post specifically for questions. Thanks everyone, for your awesome patience and understanding while I have not had the state of mind to do this as of yet.

So Here is Question #1 that 2 readers asked!

Melanie said...

I do have a question though: How do you pronounce "Veiyah"?

Love and prayer,

Melanie, Ryan and lil Samantha


And...

Lynn D said...
I'm still praying!

Would you please give me some idea how to pronounce her name? I think I probably say it wrong. I know God knows who I'm talking about... but I would like to say it correctly in my prayers.
Lynn in Alabama


"Guess that would be nice for you all to know huh? Veiyah stems from the name Nevaeh, which I'm sure a lot of you know came about as the word "heaven" backwards. I am not one for trendy names and I like to be different, if you haven't noticed. DISCLAIMER: Madi wasn't popular in 99-2000. In fact, that was the year everyone decided to copy ME. ;) BUT the one nice thing that is different and original about Madi is that it is just that, Madi. No Madilyn no Madison.....but she wishes it were. ;) So, Selah, Veiyah and Aderah are my 3 most original names. I have a good friend, Salina, who's daughters name is Nevaeh. I heard her call her Vay. I LOVED it. I didn't want to steal her babies name and I didn't want to be trendy. So we liked the last part of her name so much, that we just cut the name in half. or...1/4th's? hehe So, think of Princess Leia on Star Wars, but just put Veiyah in there. Because, well, she IS a princess. And much more so than Princess Leia. ;) If you are STILL confused...I'll do like a dictionary pronounciation version... how's this? (VAY-Uh) Uh like...Uh.....I think I get it now! (Praying you all do)"

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Question #2 that 2 readers asked:

Tammy said...
Please tell me about the green hand on her, is that a "comfort" hand?

Sheena said...
Hi from Adelaide (Australia)! Stumbled across your blog today and wanted to say that I am sorry for what you have been through. I have only looked b ack through a few entries but have a question. In the post with pictures of Veiyah in hospital, there are pictures of her with a green "hand" (glove like thing) resting on her. Could you explain what that was? I have been a peadiatric nurse for many years and we have often talked about the need for a machine that would pat the babies for you, or at least apply some pressure. So many babies need to feel the "presence" of someone but we don't always have a free hand. Just wondering if this "green thing" was something that we could adopt for use on our ward.
Hope you are all getting better and that bubs gets to come home soon! Take care, Sheena

"Yes, this hand is used for comfort for babies, especially newborns that are in the hospital and their Mommy's can't always be near by. It is called The Zaky by zakeez.inc. Shhh, don't say anything but one of these hands (a pink one) was taken down to the floor with Veiyah by accident. One of the nurses saw it and asked me if I wanted it. I SO jumped on it. Now, she sleeps with this hand all the time. It just adds that little touch more of comfort now, but Veiyah was SO comforted by it while in the PICU. It's washable AND heatable! :) We LOVE it. I'd like to get another one sometime, since this one is so used. But we'll take what we get these days!" :)

3. mamajennie said...

Hello there, I am so glad to read that her brain is okay! Yess!
Also, I noticed her cheeks are really broken out in a rash, my daughter had same thing when they used that tegaderm plastic sticky stuff on her skin to hold the feeding tube in place. Please ask the docs to remove it, her skin is too sensitive to it! It will break down her skin and cause infections. They can use something more gentle on her skin instead. Please advocate for her. Her skin shouldn;t look like that!

Thank you for your concern for Veiyah's skin. This has been an ongoing problem since the day she was born. We have tried about everything and this little girl is stronger than one might think. We all know she is strong at heart, but she is also "strong at hand". ;) She pulls her tube out at least once a week, mayyyybe once every other. We have tried every product we know of so far. Tegaderm, Duoderm, Flexiderm (i think that's what it's called), etc. We also are always bathing her in Aquafilic (sp) lotion that works wonders! Things have gotten TONS better with her being out of the hospital and also this warmer weather has really helped. My skin gets dry in the winter. I'm sure it's worse with her with tapes and glues all over her cheeks. I do want to clarify that we have always been an advocate for Veiyah. We make our voices loud and clear...sometimes too loud if you know me. ;)

Here are V's Cheeks healing up nicely~







4. Lots of you asked:

HOW DO I ORDER MY "Pray for V" or "V's Knees" T-shirts??

"This has seriously been asked plenty of times, and I am so sorry if we haven't been clear. I also want to tell you about these shirts and how "cool" they are and other things...then after I have my little speal, I'll give Court the Mic! ;)

My heart, along with Courtney's and Jess's, is so much bigger than just V's Tees. We want to reach out and help families in need in times like our time with Aderah and Veiyah. Our mission is so much huger than one baby/child. It is hard for me to post things that Courtney has written because I don't want it to look like I'm asking for money. But I do want to get the word out so that people get Tees in their hands and see the styles, and be excited to help families out! One thing I am SO excited about is that we have so many awesome people supporting us in this mission. Creative and STYLISH ;) designers, Willing T-shirt makers, People donating their time, all to raise money for babies that have been through similar issues as Veiyah and Aderah."


Now I may have gone too far, because we have yet to put out our mission statement. I can't wait to get the shirts in your hands so you can see that the product is not just some old tee that you might wear to bed, but stylish and something you'll be wearing for a cause and a prayer. What a great way to tell a child's story!

Here is Court!! When you are done reading what she has to say, there will be a link that says "CLICK HERE TO BUY YOUR V-TEE". It looks like just a bunch of words, but if you mouse over it, it you will see that it becomes clickable. Click on it, and you will arrive at a little page that we quickly put together. On the right hand side, you will see the designs of the Tees, then below those designs, in the same column, is where you choose your design, size, color, etc. I hope this helps you all out more. If I'm still not being clear, please feel free to email Courtney @ cmisener@premieradvisorsllc.com.





Hello Everyone!!!



To all of Veiyah’s amazing supporters who have purchased a t-shirt or onesie….we have not forgotten about you!!!!!

We had an overwhelming response after listing these shirts a couple weeks ago on Ani’s blog. Our t-shirt fabricator, Deb, found a way for us to be more cost efficient by producing the screens ourselves instead of sending out for them to be made. This means less cost for us and more proceeds for the Karg’s!!! Though we were extremely excited about this, we also knew it would set us back over a week in production waiting for all the equipment and supplies to arrive. We (Jessica and I) are working diligently to get these printed…..a lot more goes in to printing a t-shirt than I ever expected!!!!



Thank you all for hanging in there, I promise the wait will be worth it. We will both be working after work hours this week and weekend to start shipping these babies out! Also, please remember to take a picture of yourself or loved one wearing your “V”- Tee…..we want Veiyah to see how much she is loved!!!


*CLICK HERE TO BUY YOUR V-TEE*

Thank you all for your patience and support of this project-



In love,

Courtney and Jessica


PS. Ani's "I AM that Miracle" onesies are DONE! We're so excited to ship these out to families that have their own little miracle.

Do you know a baby that needs one?

Tell you what, for the next 15 Tees sold for V, each person that asks for a Miracle Onesie, we will include it for free! Your choice of Pink or Blue and Size! :) We will be taking pictures of V and another little baby boy wearing these so you can see how awesome they turned out!!

Home and Easter (YouTube video included, turn up your sound!)

We'll do some tests to make sure she can see okay...



Yes, she can see.


Is she reaching to touch things yet? She's 6 months old, she should be reaching...


Yes, she reaches out and touches...



Well, she's behind compared to....


No, she isn't "behind" in my books...or His.


Does she look behind to you?


She's onto us...



The nurse asked if we had a homecoming outfit for her this time. How many going home outfits can you have for one child? I don't think we are too freaky about her homecoming each and every time. Well, maybe we are...but this time we just grabbed her and RAN.

We didn't do a whole coming home thing this time around, but we are just as excited to have her back! :) The only thing is, is having to adjust each and every time.

I have a new baby... I don't have a new baby for a long time... I have a new baby!... I don't have a baby again, in fact, we might lose our baby... She's home! She's gone again...again we don't know if we'll see her again. ...She's home!! This has got to be it! ...Nope, she's back with the stomach bug that turns into 2 weeks of being ridiculously sick. ...SHE'S HOME AGAIN!!! Anyone start to get sick on that little ride I took you on? This is our roller coaster. errr... I mean... life.


Man, this week has been so hard. This is my 3rd day trying to attempt to write this update. I didn't realize that the week before Easter would have any sort of affect on me. But...it does. I didn't have Easters with Aderah, so that isn't the problem. I won't ever have Easters with Aderah. That is the problem.

Easter Sunday will never be just right. I am struggling this weekend. Veiyah is still getting RSV shots and she is the only baby signed up for a shot in April. They extended RSV shots for April because of the cold weather here in Iowa.

Why do I choose the I states?

So, before V got sick this last time, I was crossing my fingers for Easter Sunday being her first big outing. Madi and Selah have a program ...they are dancing and this is Selah's first program with her big sister. She has sung with her before, but now they are in the same dance! They are amazing and I can't wait. But I will do it alone this year. Jer WILL get to see them dance Saturday night, so that is good, but it's not the same.

These were some parts in a back and forth email to Jer about Veiyah not being able to go.



Jer: "I am just not sure what alternatives there are. we can discuss later."

me: "there aren't alternatives. we either just do it or we don't. i'm so wanting a normal weekend. i'm so wanting 4 daughters. 3 will do. I so want to buy 4 easter dresses. 3 would do."

The rest of the conversation plateaued.


I went there.



And our nurse practitioner, Trudy, highly recommended we NOT go.




So the song the girls are dancing to rings in my head all week.



And today?



...Veiyah laughed for the very first time.









So guess what?



It's gonna be worth it. It's gonna be worth it all. HE will be worth it all...

*You guys we have some awesome shirts for Veiyah coming! We will be getting pictures of the actual Tees here soon, but for now, get your V-Tee! :) I can't wait to put a huge collage together for her to see how many "knees" she has!!*

*CLICK HERE TO ORDER YOUR V-TEE!*

Veiyah's brain...

Looks GOOD! :)

Well, we don't know all of the details yet, but there is nothing serious going on, and the concern that they were having was NOT there. :) No spinal fluid pressure!! So, I guess they are waiting to talk to us till tomorrow when someone else takes a final look at her MRI. That obviously means that everything looks good.




Veiyah's eyes have been looking so good the last few days as you've all probably noticed on her pictures. The time that it was really bad, I didn't think to take pictures. Jeremy is convinced that he was "right all along". I am convinced that God did something Awesome, again. :) Her eyes look great today and she was SO alert.

She found her hands! No wonder she's going cross-eyed, if I just found my hands I'd be lookin' at them too, and right up close! So, of course we want to say....We KNEW it was just a baby thing. But if neurology was concerned, then something obviously didn't look right. I would think it had something to do with her severe dehydration.

Wellll, we'll find out tomorrow. Today was a LONG day. They didn't get Veiyah down there till Noon. I carried her down in her little hospital gown and they didn't get her put to sleep till 1:10. Then I didn't see her till 4:15!!! So, what we thought was going to be an hour and starting at 7am, ended up being 4 hrs and taking ALL DAY. I do have to say that had me worried when it took so long. I finally went looking for her myself and found her laying in peds recovery just lookin' around smiling at all the nurses. :) She's the sweetest thing EVER people!!!

They are keeping Veiyah in house for the weekend till Monday or Tuesday. WOW! We never thought we'd be here this long this time around. She has been losing weight....(I wonder why) so they want to up her feeds and make sure she is gaining and keeping things down before they release her. They said that V is just too fragile to send home too quickly. As much as I want to get home, I have to agree. I don't want to go home just to bring her back in a week. Buuuut, that's how V seems to like it. I'm hoping she'll LOVE to be home this next time. That she won't be visiting her Dr's anytime too soon.

Thank you all so much for your prayers for Veiyah's eyes, brain, and well the rest of her little self. God shows us what a miracle she is everyday.

Also, I want to say thank you to Courtney and Jess for such an amazing gift. These Tee's are SO great and we are SO thankful that people want to help us out and support our little V. I want pictures from everyone who gets one...baby, toddler, tweens, teens and adult!! - so that I can start a little picture gallery for her to see one day...of all the people that prayed for her.

Get your "Pray for V" or "V's Knees" Shirts Here!!

THANK YOU EVERYONE! We love you all so much and we are continually thankful for your "Dirty Knees". Veiyah will ALWAYS need them and one day SHE will be thanking you herself!

Pray that Veiyah gets to get home as soon as possible! We want our baby all to ourselves again...


You know I always get my pictures in... Veiyah was the sweetest lil' patient ever. The Dr's all loved her and held her hand....SO cute!
















My Crazy Girlies...





Yes, she's wearing sweats, mittens, short sleeved shirt, shawl.... This is Selah. (She looks like she is being strangled by her seat belt...I promise she's big enough! I just like for things to look dangerous on film...just to add to the effect.) ;)

Karg Family Blog Invaders! Plus Update on V's Scan...*Must Read*

Letter from Karg Family friend, Courtney~ But first,





***Update on V's Scan***

*Tonight Veiyah will rest and NOT eat so that she can be intubated at 7am. Please pray for us as we wait to hear any news of our baby girl. She needs rest, God give her rest from any surgery. We put this all at your feet, Lord.*

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Hello Everyone!!!

I am SO EXCITED to be posting on Ani’s blog about some fundraising we'd like to do for the Karg family!!!!

For those who may not know me, my name is Courtney Misener. I have known Ani since moving here four years ago from Tennessee. My husband, Josh, has a large “extended” family of friends, and Ani and Jeremy welcomed me with support and love when I moved here. Ani and I were pregnant at the same time; I with my first born son and Ani with her twin girls. Since the birth of both Aderah and Veiyah, these twin girls and this family have forever changed my life; not only as a mother, but as a woman of faith.

I shared Aderah and Veiyah’s story with my friend, Jessica Andersen. She really took interest in the Karg family and started following and praying for Aderah and Veiyah. Jessica and her husband Chris have two beautiful girls and they were touched by the experience the Karg family was facing. She came to me and said “we’ve got to help this family”, and hasn’t stopped trying since! She also has been touched in a profound way and feels that Aderah and Veiyah have called her to something that she cannot, as a woman of faith, ignore.

The Karg’s story is definitely one of triumph, heartache, patience, strength, faith and most importantly, a true testimony to a living God. Though uplifting, the reality of the situation is that Ani and her family have accumulated hospital bills and traveling debt while trying to stay afloat with normal everyday expenses and bills.

Jessica and I, with the permission of the Karg family, will be selling T-shirts that will showcase our love and support for this family. We have two different styles, for both male and female that will say “Praying for V” or “V’s Knees”. They are designed by Ani’s very talented nephew, Seth Lunsford. (If you like, click on his name to see more of his designs!) You will be able to purchase and view the designs on a website/blog created specifically to help the Karg family. We have a variety of sizes and colors.

The price of the shirt is $15 including tax and shipping. The proceeds from the sale of the shirts will be going to the Karg family. We are blessed to have found an amazing woman named Deb who owns Art 2 Embroidery in the Czech Village. Deb has so graciously donated her time and cut us an amazing deal on the cost of the shirts! Thank you Deb!!!!!

Through this process Ani, Jess, and I realized that we all have the heart to reach out and help the many families experiencing the same situation. We have decided to join forces and start a Non Profit Organization called "OneSeesMiracles". Our desire is to facilitate and fundraise for families that have children with an illness. We would love everyone’s prayer and support as we continue to work out the fine details of starting this organization. Little Veiyah is our first client!!!

Lastly, I know many of you have asked about Ani’s brilliant idea with the “I am that Miracle” onesie. We are working hard to get those designed and in your hands, so hang on….they are coming!!!!!

I know this family has so much love and support and the shirt designs are well worth your money! Please help this family in their time of need, and if at this time a shirt might be too much but you would like to make a small donation, please get in touch with Jessica or me via email at OneSeesMiracles@yahoo.com.

God is all over this family, God is all over Veiyah, and I believe He is all over this project!

Click Below to see the designs and order now!

Help the Karg Family!

A proud member of V’s Knees,

-Courtney

Small Update on V~ Okay...I can never do small...

Veiyah is holding all of her feeds down now and is looking so great! We are STILL waiting, however, on the brain scan. I guess they wanted to put her on general anesthesia for the MRI and Cardiology says no way...too risky for her. So, we're trying to figure out another method of sedation. Her eyes seem to be focusing more to me, so I WILL be making sure this is worth it before we go forward. Thanks for all of your concerns in getting a 2nd opinion. I really appreciate that you all care that much. xoxo

I was in a dark room for about 3 days with a terrible migraine, so didn't get the chance to see my sweet girl. Jeremy came in and took care of her and can I please tell you what an AMAZING Daddy he is? Thanks. He is SUCH an AMAZING Daddy! :)

We really thought we'd be home a lot sooner than this. We had to finally get a hotel after not being called by the Guest House here. We DO realize there is a Ronald McDonald house, and they have a waiting list as well. We could probably get in sooner there than the Rossi, but here's the deal...

When I gave birth to Veiyah and Aderah, I went straight to the RM House. I finished Aderah's blanket that she would forever lie in, at this place. I groaned grief with sounds I didn't know I was capable of making in this room. I pumped all night and all day only to remember that I didn't have a baby to feed. Veiyah was medically paralyzed, and Aderah was with Jesus. I had empty arms. I planned Aderah's whole funeral while we stayed here and at the same time planned Selah's Birthday party. This time was such a dark, grief stricken, yet unforgettable time in our lives. I arranged to have Jeremy pick up Aderah's body from the Hospital and take her down to the cemetery, when finally, we were blessed with a VERY nice mortician who said he'd come get her for free. But we "knew" for a full day that Jeremy would be picking up our daughter and putting her in our van and driving her body 40 minutes away. This in itself was something to grieve over. What a responsibility. My Mom helped me write out Aderah's obituary on my bed and I wanted it to express our hearts, that glorified the Lord and that honored my daughter. I read Jeremy's letter to his daughter that he'd never see grow up, never get to hear laugh, never get to wrestle and tickle like he does with her sisters.

My girls still cringe when we drive by the RM House. I know, it shouldn't be that way. The RM house is there to help and they are AWESOME. I intend to support them always as they housed us through this most tragic time. We just can't go backwards right now. We are not even to the point of "getting over" things and we may never be. God’s mighty hands of warmth, calm, pain relief, and healing touch are definitely healing us. But I strongly believe that we have to be careful with our most precious organ, our hearts. If my little girls beg us to not go back there, then it's that easy. It's just a no. So as much as we know how much of a help the RM House is, for our family, right now, we just can't go there.

I know that was a long description of why we would say no to the RM House. I just want to be honest and clear as to why. In some way, it is also therapeutic for me to recapture what DID happen there to remind myself why we are passing it up.

All this to say, this hotel room is a blessing yes, but it adds up. We have to be close to Veiyah, or our lives are turned upside down. It's living 2 separate lives either way, but even harder when further apart. So, we continue to dish out money that we would normally use for bills, food, etc.

All THAT to say, please pray that we can get out of this hospital soon, so that we can get back to our home and continue to pay to live THERE, instead of there AND here. ;)

Thanks so much for lifting up our family. God hasn't left our side once and I know He doesn't plan to. :) In fact, I want to tell you what will be happening here quite shortly.

I have a couple of friends who have fallen in love with our Veiyah along with all of you! ;) I will let them do there thing here and show you what they are wanting to do. This will eventually be an awesome way to get some Miracle onesies out to Miracle babies all over the country, and all over the world!

As for now, Praying for Veiyah is a critical MUST! So I am excited to see people "wearing her on their sleeve". You'll see... :) Thank you Court and Jess!




*Update* We just learned that Veiyah WILL be in-tubated tonight most likely and sent in for an MRI. Please PLEASE pray that this process will go smoothly and that she can be ex-tubated in good time so that there will be no complications that will send her up to the PICU. They feel this is the right thing to do because if they do just IV sedation with the risk of her vomiting lately, that could be very dangerous if she were to vomit during sedation and clog her airways. It is also important because if she has high spinal fluid pressure it's something we don't want to mess with. We still have to talk to everyone tho, because Jeremy isn't here yet from work. Pray for good decisions to be made!!! Thank you V's Knees! You are AWESOME Knees, I must say. :)

(Smiling (ALMOST Giggling) for Daddy)




xoxo