Hello V's Knees!
I kinda just came up with this one and it happened to get 115 out of 258 votes! Thanks for voting and I know Veiyah will be so happy one day that she had extra knees out there. ;) (For those of you on Carepages, this was a poll I held on my blog at blogspot. ...don't feel left out!) If it's not cool with my carepage followers we'll definitely start a new poll. Cuz we hafta be equal. I just have more options on blogspot like polls and such. :)
I have GREAT news!!! V was EXTUBATED on Sunday! I know, I'm late. It's been a couple of crazy days. I am exhausted I tell ya. We sent Madi and Selah off to be with their cousins on Saturday. Sunday morning we woke up to a refreshing ring rather than a dreaded one. "We've extubated Veiyah and she is doing GREAT!" I think we were planning on them calling us before they did it, but it was nice to not have to worry during the process. It was done and she was satting at 89 RIGHT after! What's that you say?
Yes 89!!! :)
Yeah, funny thing...the alarms are now going off when it hits 89. She got up to 94 yesterday and they had to "watch" it. I guess too much oxygen would flood her lungs. Oh only Veiyah...only Veiyah.
She lost her voice in this whole process so she would cry and you couldn't hear her, you'd have to look at the right time, because the only way you could tell was her sad look! Her arms weren't even moving a lot. She was a little sedated still so it was just a little cry like...mom, what just happened to me, or...where am I? aww! Let me tell you, this was the saddest thing EVER!
So, that was a great phone call to get at 9am. 10 am the phone rang again and it wasn't the greatest call. My sister called to tell me that Selah was running a high temp and is just SICK!
Well, of course! You don't think I can just have a bit of space on my plate, do you? C'mon, this plate is full. It remains full. Don't even try to remove anything. Well, you can try....please? ;) I talked to Selah and she was really bummed out because she was supposed to go to another cousin’s birthday party that day at her Lala and Papa's house. (Grandma and Grandpa- My parents) She said, "Mom I just want to go and have some cake and then you can come get me, k?"
I finally talked it through with all the Aunts and my Mom and came to the conclusion that Selah needed some Benadryl and Tylenol and that she could sleep at Mom's during the day and then go back to Sarah's. I really can't have a sick kid here! What happens if something goes wrong with Veiyah? I can't take Selah with me...I can't leave her alone... I've got nothing to offer her here. I have SUCH an amazing family. I am so blessed to have people that will take my SICK child and be her "Mommy" for the day. Sarah even made Selah her own sicky couch. I always do that. Well, that's how we grew up...so I only expected that from Sarah. I'm happy to report that Selah is doing much better now, thank you Jesus!
So, V continues to be in the mid to upper 80's and is getting 16 cc's of food per hour...that continues to go up. She is coughing a lot now trying to get her voice back and I'm sure her throat hurts like crazy. I know mine would~ Tonight, she got her central line pulled and had a new IV put in her foot. So, she is almost free from everything! I mean, she's still hooked up to monitors, so it's still hard to hold her...but I held her yesterday!!! :) WITH everything (except breathing tube) hooked up! I'm trying to find that photo...I think it got deleted. :( I got to hold her on the pillow she was on since there were still so many wires. But it was still good and I still got to let her smell me.
I held her today too. I told Jer that it feels like each time she comes out of a procedure and is extubated and off of her meds that I have to re get to know her. When we came in 3 (yes 3!!) weeks ago, I had to tell the nurse everything to do. I knew her like the back of my hand.....(who knows the back of their hand anyway? Sometimes I wonder that....I don't think I've ever even been formally introduced to the back of my hand....should I do that?).
Now, she will be handed to me and I feel like a new Mom each time. So, this can go two ways. It's frustrating on one hand, because I don't know what face means what, what cry means what, what makes her most comfortable etc. On the other hand...which I just introduced myself to, by the way, ...no not really, that'd be weird...
it is really awesome!!! It's like a new baby each time! Well hello there little girl! Where have you been? What have you been dreaming of? Did you see your sister? What was she wearing? A pretty white dress with a flower tiara? Did she carry a basket and let you pick out a flower?
....I could go on.
That's just one thing I wonder. But then I wonder if she remembers me. She sure studies my face a lot each time. I talk to her while she sleeps, so I know she recognizes my voice. I'm hoping that I have a familiarity to her that comforts her when she sees me. She definitely remembers her Daddy's voice too, he speaks and she looks right in his direction. :)
One of the nurses referred to our "V" as "little Vay" tonight. I fell in love with it of course. I do want to say that I have been so blessed with all of the PICU nurses and staff. Veiyah loves her some Missy!! :) Mama does too! Missy is awesome and we get along great~ the slacka! ;) jk Miss, misss you already! V tends to adjust well to each nurse, though and I so appreciate that about each one of them. They are all able to adjust to HER quickly. I'm actually about to tell you some more good news, but it's also bittersweet.
Veiyah might be going down to ...wait for it....the floor!! in the morning! :) See, this is GREAT news for Veiyah. She is doing good enough to be going there. For me? I have grown quite attached to my PICU family. Nurses, staff and families. Oh and the Mt Dew Machine! What will I do without you?? I'll post on Him later...maybe secretly...Jer tends to get jealous. (psst...I'll miss you M.D. Machine!!)
I don't have much more tonight. I'm pretty worn out and I couldn't ask Jer to do tonight's post like I was going to, because he was asleep when I came in. I was too wrapped up in making sure that Veiyah was okay without me. Heather is great though, and scooted me on my way so that we could eat. So, Jer woke up enough to eat and watch a movie with me. :) Thanks for the extra nudge Heather! Veiyah is lovin' her some Heather tonight! She got her some more morphine and something to help her sleep so that she doesn't have withdrawals. She got all jittery and her heart rate went up a bit, she was feverish. So, I rubbed her head, changed her diaper like 3 times, put on Veggie Tales, turned off Veggie Tales, put the TV on the C.A.R.E. channel with cheesy mild music that she seems to like and hushed her environment. Until I back up and fall into the sliding curtain that slides every time you even barely nick it. LOVE it….yah no.
I got 2 packages today!! You guys are too much and so absolutely amazing. These little care packages have been making our days here. I will take pictures tomorrow and post so everyone can see how blessed we feel and are. :) Thank you!!! I also had some visitors today. My great friends Jenny and Christina (2 of the most beautiful sisters you'll ever see) and Jenny's beauty Blessing first missed me, but I caught them in time for them to get their tooshies back up there!! Track me down before you leave people! I'm SO open for a visit! :) Calling is always good too. ;) hmmm.... ok just kiddin' J and C. Luv u both~ Thanks for coming up! I LOVE YOU 2!!!!
On that note, I am off to try to sleep. You know I won't leave here w/out posting some non-tube photos of our little V! Oh and I might play some pathwords too, just so you don't think I'm going straight to bed, cuz then that'd be dishonest of me. Pathwords help me sleep. Thanks to Angie from Bring the Rain. !!! I'd never even heard of it till I read that blog...or maybe it was her twitters, I don't know. Okay, now I'm just typing to type. Hope you are all just enthralled!!
Here is our STAR! Little V, Little Vay, whatever you prefer....My daughter, Veiyah Jaielle (God's Power) Karg. :)
Be Blessed, we hope from our family to yours, but especially from up above,
Monday, February 23, 2009
Hello V's Knees!
Friday, February 20, 2009
Veiyah on Thursday Feb 19
Veiyah on Friday February 20, 2009 (I love her eyes. ...oh and her little footsies) Her insision tape was taken off and is now visible. It heals so well and is looking GREAT!!
These last few days we have had a few surprise boxes and envelopes in the mail. We have been SO blessed to hear from old friends, people we grew up with, and also complete STRANGERS. Also strangers that share similar stories as ours. I want to be that encouragement to people because I know the way it blesses me. Here are some pictures! I'll try to label them all! Thank you SO much for all of your amazing hearts to give and shower Veiyah and US with such love.
Veiyah received some beautiful Springy Tulips from her Uncle Jonathan. All the nurses ooohed and awwed over them because Spring can't come fast enough around here. :) Thank you Uncle Jonathan!
One of my best friends, Erin and her little girls Bethany and Gabrielle sent us these gorgeous flowers. Thank you so much sweet family. We miss you sooo much but we are praying for you to be HEALED in Jesus' name!!! No more BUGS! ~Amen!
Here's a better shot of V's V-day Balloons and her Moobra!
I got a card from a friend I went to K-12 with. Julie. She is such an amazing Mama and is expecting her first girl after 3 boys! Thank you Julie for the bows, video, and a card that I'm SURE she made herself. ;) Gotta love those creative scrapbookin' mama's!
I was SO surprised to get this little lovey from a neighbor I grew up with! Joy across the street that used to hang with my sister. So crazy! Joy, it was SO great to hear from you and thank you SO much!! I can't wait for V to cuddle with this sweet lovey~
Salina, a friend for so many years, that has not stopped being my friend for a second. Even though we have distance between us, our hearts will always be close. We always make time for each other. I love talking to you and I love that Veiyah's name stemmed from your Nevaeh. :) Thank you for your sweet sweet box and a date night for Jer and I to Olive Garden! The girls were so excited to get some cuddles from Samiah and Vay. ;)
This card and picture came from a complete stranger turned God-given friend,Julie, from Utah...(Julie I am from Idaho! ;)) and we share a similar heartache. What a blessing you are to Veiyah and my family. To me, knowing that another Mom knows what it's like. Thank you!!
This was so awesome. A girl named Jamie from Illinois has a sister that lives in the same city we do. She volunteers for the Basket of Hope ministry. She called her sister, Dani, and asked her to bring us a basket. 2 people at once! I got to sit and talk with Dani and we have something in our heart in common too. We have angels in heaven that will be the most amazing souls when we meet one day soon. Jaime, you not only sent me this basket, but you sent me 2 new friends. You and Dani. Thank you!!
Another Heart Mommy that we met up here when Veiyah had her first surgery, and we met again at the Valentines Heart Friends party, Mandy, sent the girls and I some fun crafts to do. We are so grateful. She is right, the hospital has some FUN crafts, but it's always so much fun to have more and that is ours to take to our room and play with.
Mandy also made this bracelet for me. I need to get it extended in size before I can show it to you on me, but it has all 4 of my girls names on it. I cried when i opened it. Mandy, you don't know what that meant to me. Thank you so much for including Aderah's name. I couldn't tell you what a blessing that was. She is my 4th and yougest daughter! :) I love talking about her...so now I will wear this bracelet (well when you make it a bit bigger ;))and if anyone asks me, I have such an amazing story to tell. Thank you!!
This next sweet gift, so beautifully wrapped...I wish I would have taken a picture of it before I took the bow off...It was like a thick shoelace and it was soooo cute! These are my colors too!....ANYWAY, came from a sweet Mom who couldn't hold her baby for some time and held this "Little Angel" in her arms at night to comfort her. The blanket is just the sweetest and she also gave Veiyah a little heart photo frame. Thank you so much for handing down such a precious item of your own.
This here, is V-Dogg (Jer goes by Jer-Dogg all too often by Yours Truly, and when I saw this sweet thing, I had to name it after Veiyah and it's God given name. So it's V-dog from Veiyah's LaLa and PaPa. (My parents) Thank you Lala and Papa! I love you so much! Can't wait to kiss you again!
Madi and Selah also got a little dog from Lala and Papa but they were carrying theirs around at craft time while I was taking pictures. But they named theirs Smores and Lovey I believe! ;)
Veiyah is continuing to show us how powerful her middle name really is!
Jael "God's Power"
She survived 3 open heart surgeries in 6 days. She isn't even 11 lbs yet. She was supposed to die 6 hours after birth. We were then being handed her over to us to die in our arms only to stop all machines and drop every Dr's/Nurses/Staff/OUR jaws. She made it through her first open heart surgery 3 weeks after birth at only 33 weeks gestation. Her twin sister died from SVT, Veiyah slipped into SVT and we said to ourselves that it was over. She was healed and hasn't slipped back since the first day it happened. (some Dr's disagree with me on that, but i'll explain that later)
Bowel surgery came on December 15th. She was 2.5 months old. 2 weeks old gestation. Malrotation. She then 2 days later "coded" and was bagged and chest compressed back to a fuller life. We went home for 22 days. She was Life Flighted to UIHC due to low blood oxygen and was given an emergent balloon cath procedure that we were told she "may die during this procedure". She survived and then thrived and we went home a week later. We went home for 6 days. She turned blue twice that week that we were home and we admitted her to UIHC on Friday, February 6th. Wednesday February 11th, she underwent open heart surgery called the "Glenn" and had complications where they had to place and extra shunt to get through it. Four days of no real improvement later,Sunday Feb 15, Dr Davis made the decision to go back in and take down the original Glenn. While in there, cleaned it out and it looked fine, so kept her chest open to see how she'd do. It only spiraled from there. Monday Feb 16 emergency surgery was taken on a 3rd time to take down the Glenn and put an extra shunt in.
This baby that was predicted to die and her twin predicted to live, is ALIVE and is a living PROOF of our Most High King. If anyone wants proof of a miracle, I can send you the paperwork from the staff here that doesn't explain why she has made it thus far. Just say the words.
They took out Veiyah's chest tubes today. She is still intubated but they did a pressure test to see if she could handle being extubated soon, and she passed with flying colors. They are slowely going down on her sedation/pain meds to get her to a place where she'll be awake enough to remember to breathe when they extubate her. This will hopefully happen w/in the next day or so. Veiyah had 2 blood clots from after her pic line in December. They never changed, never moved, and they have NOW gotten smaller.
This little girl is whom you have been praying for. She and her Mama and Daddy, Sisters, Aunts, Uncles, Grandma's, Grampa's are SO very grateful for the prayer that has been invested into our Veiyah Jaielle. She is here because God's Power was spoken into her name.
Wednesday, February 18, 2009
It's been a really good couple of days. Veiyah was taken completely off of her paralytic and started twitching and trying to open her eyes last night. We got a little bit of that on video:
Here is the first night off of the paralytic :
And here is tonight! (or last night to some of ya)
Then today she seemed much more awake, even though quite doped up, she still looked at us as much as she could! :) SO fun! I can't wait to see her personality again. These are dark videos but try hard to see. She had to have the lights off to open her eyes, otherwise too bright!! She's doing really well, her sats are sitting in the 70's and her blood gasses are coming back great. She is so incredible!!!
So, guess what I got in the mail today?
Wait for it.....
My beautiful, sweet, AMAZING sister-in-law, Lisa (Married to Dave (brother with CD on side panel) had this made JUST for Veiyah. Isn't it the sweetest thing ever?! I love it and hope to get a few more colors! :) Be praying and thinking for us. We have some ideas on how to get these out and donated to hospital PICU's and NICU's and then sell them online for some heart charities! :) We are so excited to take off with this, because from the VERY beginning people have given us SO much. I've always wanted to somehow give back but I didn't know how. You have all inspired me to move on with this and now it's a HUGE passion of mine. :) If you have any contacts or ideas for us, please contact my friend Courtney Misener at firstname.lastname@example.org. She really wants to help out with this, and I'm so blessed to have her as such a great friend and someone who is as equally passionate about this! :) It'd be better to tell her your ideas, as I'm quite busy right now. ;)
On another note, we have gotten a few emails on how to purchase a birdie mobile. We had a couple asking us if they could buy it for us. You guys are too much! Thank you all so much for your sweet emails and for your offers. I was trying to find all of you to email you and tell you thank you. I KNOW for sure I missed one of you because I can't find that exact email/comment. Will you email me again to reveal who you are so I can thank you personally? We DID finally say yes to someone. She used it for her first daughter, is now pregnant with a little boy, and wants to send us her mobile! We are SO grateful and can't believe the hearts of people out there. Thank you SO much, Darci!! We will post pictures of Veiyah being mesmerized by it one day soon!!
The girls got to go to a Valentine Party on Saturday for all of the "Heart Friends". We are proud to be a part of this wonderful group of people who know what it's like to go through what we do everyday. It was like a little carnival set up, so sweet! I got them some tees so they can proudly support their sister and then they got to pose in a really awesome circus head shot thingy. ;) My friend Heidi made it and she is awesome. She also does incredible photography!!
Here are some pics of some of us heart Mom's and "our" Trudy! :) Erin and baby Carter, Kendra and baby Olivia ...Trudy and Heidi and baby Ellie. And of course My girls Madi and Selah and I! :) We were missin' a few mom's!! Mandy with baby Grace and Stefanie with big boy Logan!! A few new ones too, of course! ;)
These are some pictures that we have on Veiyah's door. We had 2 sweet people send us some e-post cards from the hospital! It lifted our spirits so much! Thank you so much Bonny and mrsslats! :) The others are mine and Madi's. It was the night we wanted to bless Veiyah with some V-Cards. ;) Also, the nurses made a cute sign above her bed. I tried to get a good pic of the balloons that one of you sent!! It's in there along with V's Moobra! That's the name we decided on him. :) My sister automatically thought of the word BRA, but that's just Sarah. ;) Thank you all so much for such awesome hearts.
I took pictures of some of the sayings I put on Veiyah's sign. One says: Veiyah, Be Still and know that I am God. One says: God made you in His Image. Your heart is normal to Him. Another one says: You are fearfully and wonderfully made. The last one says: I knew you before I formed you in your Mother's womb.
I got the most AMAZING massage yesterday, Tuesday. It was SO needed. They have some ladies come in on Tuesdays and Fridays that come find you if you sign up and take you into the family lounge and set up their chair and relax youuuuu. I loved it, I was in heaven. I was asking myself why I hadn't been doing this!!! So, I got a note today inviting me to a Spa Night down on the 5th floor. This hospital is so amazing! I was supposed to meet one of my many PICU neighbors, Jen...but she was LATE! ;) Keep her and her family and her baby girl Ava in your prayers. This little girl has cancer and we are praying and encouraged that she is going to be healed!! The other mom's left before I could get pictures with them, but we all had a great time. I will ask for prayer for another heart Mommy and her son Alex. He has to have a heart transplant...and is just waiting here for one. It's such a bittersweet want, isn't it? You want a heart for your son, but at the same time you are waiting for another baby, another mommy's child, to die. But you know, I believe it's all a circle. God takes care of all of us, even when we lose our own. I'm praying that a baby that needs to no longer suffer will donate this heart to Alex and he can start a new life!!! (Sherry, send me your link!!!)
The Spa was great. We had time to scrapbook...a little too much time, but I'm sure that's cuz I talk too much. Hey, Other Mommy that was sitting with us that is in the PICU w/ a heart baby, please send me your carepage so I can get prayers out!!! We got a massage, it was nice and quiet with quiet music. Just a great time for Mom's to get away from the PICU or any other part of the children's hospital. It's such a stress.
Here is a picture of Jen and I. It's so great to make friends while we're up here. They become life long friends. We really had a great time and are looking forward to more things like this.
Salina, Jen makes me miss you. She reminds me of you in a lot of ways. :) Maybe I need that. :)
G'nite all, sleep tight! And sleep tight means, well, sleep tight! That's it! I will never scare you guys like that again! Promise! :)
PS. Any ideas on how I can get started on some bracelets? I'd love to send you all bracelets to remind you to pray for our V! You are all so incredibly awesome and I can't wait to one day maybe meet each and everyone of you. It'll either be here on earth or one day with our Most High King!! :)
Monday, February 16, 2009
Here I am! I'm so sorry to keep you all waiting. My friend Courtney sent me this song ("Holy", playing) today, it has touched me and has definitely given me goosebumps. Anyway, thanks Court! I luv u~
Our little V came out of surgery about 230pm. We've been talking to the surgeon, sitting with Veiyah, grabbed some dinner and I crashed hard for a couple of hours. So, here's what happened:
So yesterday I told you that they didn't have to undo the Glenn. Well, when we went to bed last night, she was satting in the 80's. We woke up at 4:30am to a call from a Dr in the PICU telling us that she was spiraling. ...Whatever that means. Nothing looked good. So they were going to do an ultrasound of her brain to see if that was what was causing her numbers to jump all over the place. Her brain ultrasound came back great. They said her numbers were a little better and they'd call us back if it got worse. 8am rolled around TOO quickly and the phone rings again.
Dr. Davis is deciding that we can't take any more chances and that the Glenn just wasn't going to work. Because of her pre-maturity, her lungs were never fully developed and the pressure was too high which restricted the blood from flowing from the upper part of the body into her lungs. With the shunt, is that it's not necessarily for the blood to flow by gravity (as what the glenn would do), that it is actually being pumped from her heart.
I grabbed everything and ran upstairs to sign consent. I put my hands on Veiyah and prayed. I said her name aloud as I do every time. Veiyah Jaielle. God's Power. God's Power is all over you Veiyah, he's inside of you, and He’s in your NAME!
I kissed her once again. Her chest was still open so I was a little sick to my stomach, but I didn't care, I kissed her for a long time. I think Jesus has given me the gift of smelling past all the tubes and tape this time around. Every time I smell her, she smells like Veiyah...my baby girl. That blesses me so much. So I always get a good sniff in before she goes.
I called my family and of course my parents were up within the hour but sat in the waiting room and let us sleep downstairs. They never give up. They will be here at the drop of a hat each and every time. We are indebted to my parents forever. I don't care how tired they ever are, they've been here each time. The first night that Veiyah was being handed to me to die in my arms, my parents were driving an hour (from their house) to show up to see our first miracle happen. They were quite delusional that night, but now my Dad says he tends to just push the Veiyah button when he gets the call now, and he's in the mode to do whatever it takes.
When I said earlier that I was done, I hope it didn't come across as that I was done with hoping, praying, fighting. I was done with exhaustion. Period. I'm sure you'll understand that.
Veiyah came back even pinker than yesterday and was satting in the 80's once again. They are okay with her in the 70's and 80's now. They just want to get her through this. Her labs continue to come back better and better. One of them, potassium, has been dipping though, so they are on top of that.
So, V (I call her that now because of all of you!...I never would have till you all started calling her that, thank u for that.) now has 2 shunts in. I really need Jeremy at these times to talk while I type. I'm sure you can tell when I call him and type his words for this blog. ;) If you can't, then go me! :)
We really are spent. Right now our knees are so dirty that they hurt. There are rocks stuck in the skin, they bleed, they are scarred. I'll proudly carry these scars, though. Funny thing, I still have scars on my knees from falling off my bike so many times as a kid. I remember having to prick the rocks out with tweezers...(ouch!) Well, as much as it hurt, I always got back on my bike. As much as this hurts, I'll always pick myself up in the morning and be ready to face another day and fight another battle for my daughter.
Hoping you all like the new name for the Blog. I thought it was pretty simple and not too crazy. Now I'm trying to figure out what to call you...we'll get there. Some are still asking for Veiyah's address. Remember that it's on the right hand side bar in pink, up top! :)
Let's pray for a blessed, restful night. You all make my families lives so much more livable. You amaze us beyond words. We could never thank you enough...but we do. Thank you.
Now that I call my Veiyah, V....I find it very appropriate by the way; but Jer got all defensive and said, "so your readers can call her V but I can't call her VJ? VJ being for her first and middle initials.
Not to offend anyone, but if you ever watch Oprah, VJ will not be used. PERIOD.
And no, I don't watch Oprah...I have to stay faithful to Judge Judy ya know! ;)
Here are some pics from today, and then I'm off for a bit to read "Goodnight Moon" to "V".
I know she hears me.
Can you see Dr. Davis in the background? He was hiding...he tried to not be in the pic. ;) Thank you Dr. Davis! You are incredible and GOd uses you in such mighty ways~