Out of ICU!!

Wanted to let you all know that Veiyah is out if intensive care and down in pediatrics in-patient!! She looks GREAT! If you wanna come see me..oh I mean her, ;) well then get here already!! She's alert and back to her sweet self!! One of Veiyah's heart baby friends Ellie, came to visit in the PICU and brought her the sweetest little teddy bear. Thank you Ellie and Heidi! It was so nice to meet you and so sorry we missed you down here on the floor!

Surgery is most likely in a few more weeks. We are hearing that we could be headed home this weekend!!

Here are a few things that blessed me this last week while we were here.



Be the kind of woman that when your feet hit the ground each morning the devil says, "OH CRAP, SHE'S UP"!


And then...Listen...And smile a little! (Oh! and mute the music box at the bottom of the page!)



Love,
Ani

Pictures and Update!

Veiyah at Home, 2 days before she was life flighted to UIHC (NG Tube out for a few)












Veiyah being Life Flighted to UIHC Friday at 11 am January 23, 2009



Did I ever tell you how hard it was to see my tiny baby girl being lifted off in a helicopter with a ton of strangers and probably scared silly? I cried so hard.



Emergent Intubation and Heart Procedure at 4pm Friday January 23,2009

Will I see her again? I had to get in and kiss her neck as many times as I could before they took her away...



I wanted to make sure I Faux-hawked her hair one last time~





Dr's, Nurses, Cardiology taking Veiyah to her Emergency Cath Procedure~



We love you, Veiyah and we're waiting right here for you!!!




And Now.....For the Millionth Time Showing....Our Miracle girl, Veiyah Jaielle! :)

(Extubated and Thriving!)








Thank you all so much for your prayers. We are not even close to being out of the woods yet, but this is such a huge hurdle that Veiyah has overcome. They extubated her around 6pm Monday January 26, 2009. (That's for my records)

She had trouble remembering to breathe at first so they would say her name, flick her feet, bag oxygen into her, and finally gave her a shot of medicine that would wake her a little better. She hasn't cried yet because of so much gunk in her throat, but she is doing quite well. We'll see how she does for the next couple of hours. There is always the chance of putting the tube back in, so please pray that she continues to do well.

Jeremy and I have been staying in Veiyah's room on the couch and chair. We finally got a hotel room 2 nights ago to get some real sleep, but those get pricey. ;)

We are on the waiting list for a room here in the hospital as they are all filled up along with all rooms at the RM House. Please pray for us to be able to get some sleep here as uncomfortable as it may be. We need to be close to Veiyah right now. She knows us more now and needs us around.

We love you guys! Thank you all again for being so awesome with your prayers and support.

Love,
Jer and Ani
Madi, Selah, & Veiyah

Called 911 and Veiyah Airlifted to U of I

Veiyah was not herself yesterday morning. She woke up at 5am and was fed at 6. She never really got back to sleep till around 8:45 and slept for a total of 15 minutes. She then started crying and didn’t stop for the next half hour. I got her meds in, tried to feed her, tried to burp her…etc. She is usually easily consoled. I realized that she was a bit clammy as well and her feet and hands were quite purple. Also, her eyes had a glaze over them that was a purple/blue tint. When she didn’t settle down, I knew something was wrong. I called Trudy to let her know and asked her if I should call 911. She confirmed over the phone with me that Veiyah didn’t sound like she was crying a normal cry and that her symptoms didn’t sound good. She said it would be best to call 911 rather than try to get Veiyah there myself.

At that point, I didn’t know how to dial 911. I’ve never had to and never thought I’d have to, especially in the case of my own child. I called Jeremy first. Then my first thought was to call my Mom. Then the thought of losing her in the time that I was on the phone with my Mom, and finally getting to 911, crossed my mind and I finally got the courage to dial 3 numbers as I shook.

Before I could even tell them what was going on, they were confirming my address and updating the ambulance. Within minutes, there was an ambulance and a fire truck outside. This scared Madi and Selah, but they did SO well. I knew I couldn’t shelter them from this, so it was hard not to feel guilty in the midst of all of it. Madi kept telling me that she "just wants to wake up from this bad dream". Selah asked me why Jesus was doing this. I told her that Jesus wasn’t doing this but that he was holding Veiyah’s hand. (The night before all of this, Selah told me that she wanted Jesus to take Veiyah to heaven so that her heart can be healed like Aderah’s.)

Trudy had told me to tell the paramedics to take Veiyah to the University. The paramedics didn’t feel comfortable, with her condition, driving that long of a drive. So, they took her to St Lukes which is about 10 minutes down the road. My sister called someone to come sit with the girls, and my neighbor rushed me to the ER. (Thank you Ann and Judy!)

Jeremy was already almost there and my parents on their way. I’m going to let Jer explain what went on from there as the rest is just a blur to me. -Ani



Jeremy here – (with Ani jumping in every once in a while)

At St Lukes ER, I walked back to the room she was in, I opened the door and there were at least 20 people in there with at least 10 surrounding her bedside. Nobody knew her history here, so everyone was asking me for names of her conditions, her medicines and all of her monitors were blaring. They couldn't tell me how she was doing because they didn't know her baseline. The Dr told me there was nothing they could do for her here and that they had to airlift Veiyah to the University. Her condition was critical enough that they couldn't drive her by ambulance for 40 minutes. We were not aloud to fly with her, so we had to stay behind and drive.

We got to the University and up to the PICU where there were another 20 Dr's standing around, but more familiar faces. They all of course recognize us and were very comforting.

Nurses were working on her and her color started to get better and her vitals were more stable. At this point we felt that she was going to be okay. That we did the right thing getting her medical help, but that she was stable now and we'll be either going home with her or sticking around for a few weeks just to wait for her next surgery.

The next thing I remember is them trying to put a pic line in somewhere where they could get blood out and medicine in, easier than an IV. During that time her sats were dropping into the 50's (good is 70 and up) and she wasn't sedated so she was crying and uncomfortable. They ended up not finding a place and decided to let her rest a bit. At that time, while she was resting, she suddenly dropped her sats to the 40's. This means she isn't getting enough oxygen in her blood. They then decided that they needed to get a central line in so that they could start giving her meds to calm her down. This went into her neck. The central line is much riskier than a pic line.

It took them a while to get the line into her neck but they were able to. While we were waiting for them to do that, the Cardiologist team sat us down.

They explained to us that in a normal baby’s heart, there is a small hole between the upper right and left heart chambers. After birth, that hole naturally closes on it’s own and it should. With Veiyah’s anatomy the way it is, because the one side of her heart doesn’t pump blood, that hole is the only way that blood can get through the heart and circulate to the lungs and body. When she was born that hole was large, but on this last Wednesday we found out at her monthly check-up that the hole was getting smaller because she was growing and that was the natural function of any heart. On Wednesday, they had told us that she should be okay for 3-4 weeks and we then scheduled a Catheter procedure and would then shortly after do the next heart surgery called the “Glenn” and also open up that hole.

Yesterday, they found that the hole had gotten dangerously smaller a lot quicker than they thought. Blood was not circulating as well as it should and it was pooling in one chamber. A little bit got through but not much at all. That explains the reason for the blue feet, hands, the lethargy and glazed eyes. They told us that the only solution was to do an emergency catheter procedure that would widen the hole by inflating a balloon. Even though the procedure is high risk with her type anatomy and even at the risk of fatality, this was the only option. They also showed concern about Veiyah possibly having episodes of SVT throughout the procedure. At the time, her heart rate was climbing and was hitting the high 180’s.

At this point we were facing our worst fears again. The fatality risk was that if they were to pull at the heart too hard it could rip the heart muscle which would require immediate open heart surgeries if she would even survive the rip. We said our good-byes to Veiyah and they swiftly sedated and intubated her. Within minutes, she was being rolled downstairs for the procedure.

It is impossible to describe the emotions and feelings through all of this. Was this to be our last good-bye? Did God allow us to take Veiyah home for 22 days to just bless us with that time? Would it have been so much easier, emotionally for us to lose Veiyah before we took her home because the bond wasn’t as strong? When Veiyah came home, she officially became part of our family. She officially became one of the 3 names we say before we get the daughter’s name we are trying to say. Madi is Smadi, Selah is M’Selah and Veiyah is either one of her sister’s names. Even though not even closely compared, as close as I can explain the pain would be, being kicked continuously in the stomach, can’t see very far past the fog around you and can’t think straight or even at all.

Ani’s whole family was standing by. Everyone dropped everything and were either at the University in minutes or volunteering to take the girls. The girls were with Ani’s sister, Sarah, and Sarah let us know throughout the day how they were doing. They are such troopers and really have such amazing little hearts. They love their sister so much. They are so good at putting her condition at the time, and prayer, together. We are so blessed to call Madi and Selah our daughters and we couldn’t be more proud of them.

The procedure was said to take several hours. She went down around 3:30pm. They told us they would call every so often to update us on her status. The first update came around 6 and they let us know that the lines were in, that the next step is the balloon procedure. This was a prompt for us to pray again, so we greatly appreciated the update. Veiyah came back up at 8:30pm. They were successful with the balloon procedure, but did have to put 3 separate balloons in to do the job. They thought that maybe in fact they were seeing SVT mid-procedure and called another specialist at home. This Dr. came in from home and knew Veiyah’s history. They decided to not name it SVT as it didn’t hit over 200 but they knew she was already on a drug called Flecinaide specifically for SVT. They have now upped her dose.

We wanted so badly to update here all day yesterday. We didn’t have our computer around and honestly, didn’t have time to sit down and even try to do it. My sister kept us on the prayer chain at church, but we know a lot of you don’t get that. We apologize if we gave everyone a scare but we know that you prayed fervently anyway. Even when we don’t know what’s going on, God gives us the gift of prayer. Even if it is just lifting Veiyah up not knowing any circumstance, God knows and also knows your heart. Thank you for praying even if you didn’t know details. For those of you who didn’t even know something was going on, thank you for praying NOW!

Veiyah is still intubated and will probably stay that way throughout today, possibly tonight. Ani has made herself very clear about Veiyah’s coding episode last time on the ventilator and everyone is aware that if she starts showing signs of stress, they will extubate immediately. This hole being enlarged is really buying us a few days for her 2nd heart surgery. We will not leave until she has it. So, here we are again. Please pray us through another battle!!!

We love you all and are so blessed by each and every one of you. We praise God that Veiyah made it through this procedure and still cannot believe the strength this little one has. The Dr’s continue to be amazed at her vigorousness and her chubbiness. She’s been a fighter from the beginning. I (Ani) talked to my good friend, Erin last night and we decided that maybe one day, we will get to the point where fear or anxiety will not phase us and we will automatically trust God to do what we know He is capable of doing.

God bring us to that point now! I long to put my complete trust in you, Lord.

We will update soon with some pictures. Be blessed today and hold your child or loved one that much tighter. I promise you, the last 2 minutes of eating up Veiyah’s neck was priceless and felt more like 2 seconds. I wanted 1 more day. Just 1.

And here we are. 1 more day, with our Miracle.

New Year, New Karg Member Residing...

Veiyah has been out of the hospital for 18 days now. Hard to believe, it feels like yesterday…so cliché, but true.

We stayed with my parents for 17 of these days, just for me to feel safe while Jer was at work. Mom and Dad have been so awesome and we are so thankful for them letting us move in and play house and dr’s, nurses, etc. We will miss having people around every morning when we wake up, but it will be nice to get home and get into our own routine. Also, my parents live in a petting zoo. It can be quite loud and we get close to committing PETA crimes. (Sorry Mom, but you know it’s true~) They have a parrot that now mimics my very laugh, and it’s made me insecure…

Veiyah is doing so well. We are now at our own home with our baby girl, not just home from the hospital…but home. I think we have a hang on things. She lost her nose feeding tube about 3 times since we left and Jer and I have been able to brave up and get it back in. It’s a scary thing, really. If you don’t put it in right, the tube goes to the lungs and instantly blocks off her airways. She turns blue and you have to yank it instantly. We’ve had to do so, and like I said, it really is scary. We’re getting better and more confident. She weighs 10 lbs and 1.5 oz now and grows each time the nurse comes. Our home nurse comes 3 times a week. She listens to her and counts her breathing, records her heart rate and oxygen sats. Then she weighs her and answers any crazy questions we may have. I always have lots. Our nurse, Kristen is really great and really loves to see Veiyah. I think she’ll be a favorite! (as are all of her other babies…;))

Madi and Selah got sick for a couple of days, and we were quite worried about Veiyah. She did end up having some diarrhea and had thrown up more than usual. The nurses didn’t seem worried as she has still gained weight and that it obviously stays down for some time, as the consistency of it is the way it is… don’t worry, I won’t go into detail for y’all. ;)


Jeremy went home a few times to get the mail and our amazing neighbors have been keeping up with our sidewalks, driveway and walkway with all this crazy snow here in Iowa. We really are blessed and are so thankful for all of them…neighbors, if you are reading this, Thank you Judy, Susie, and Ken! I’ll shoot you an email when I feel settled enough for you to come and meet Veiyah!

God is good, all the time. She really is adjusting well. She doesn’t seem to care where she’s at, just as long as she’s with us…and she can tell. If she hears our voices she is alert and ready for us to do everything we can in our power and then some, to make her smile. I’m sure that’s gotta be so fun for babies. Ummm…try a little harder next time, Mom. (actually, I’m sure it would be Dad, not Mom)

Since we’ve been home, she has only thrown up a couple times, and only had a few poops a day rather than 11 or 12. YIKES! I was given the go ahead to try to nurse her as a pacifier from Trudy, our heart nurse practitioner. She latched on FIRST TRY!

What’s up with that? I had trouble bonding with her as “my baby” for so long, and now it’s just this easy? Does she think I can just turn things; like bonding, on like pushing a button or something?

…Well, …she’s right.

I LOVE every minute of it. I can’t get enough of it! If you have ever breastfed, first of all, you are most likely a woman (hopefully!) and secondly, most likely understanding when I express these emotions. It is one amazing way to bond that not all are able to do. So if you get to, it is a treat (for both of us!). Especially when I never thought I’d be able to. She not only pacifies this way, she loves to eat this way as well. I figure she must be growing like crazy, because she tolerates it with all of her feeds. Don’t worry, I asked “Trudy” first. -I put her name in quotes so that from now on; refer to “Trudy” as the nurse practitioner we report about Veiyah to. Only thing that doesn’t make sense about that is that it’s really her name. But I want to convey who she is with my quotes. Okay, too much info-

Remember one of my first posts said that my Grammar stinks?! *wink wink*

We want to thank all of you for supporting us on this journey we’ve been going through. It continues on, and we would be so blessed if you walked with us the rest of the way. Although I don’t always get back to everyone, please know that your notes, your gifts, your prayers do not go un-noticed. We are so thankful for each and every one of you. I don’t know if I’ve conveyed this before, so I hope to do that now.

Next up is heart surgery #2. This will be in either late February or March as far as we know. We will definitely keep you updated. I will still be blogging in between, not only for updates but for personal therapy reasons as well. Maybe some videos and pictures here or there, so don’t delete until you make sure! ;)

I have some pretty intense thoughts that I do want to write about and share with you. I am honestly out of energy right now, though, but will be putting my thoughts down on “paper” here soon. (Now see, quotes were good there…right?) God is definitely speaking to me and reminding me each and every day of how sovereign and REAL He really is. So, when I say intense, I mean intense. God is never NOT intense. He is not only intense in ways of “save the drama for your mama” intense, but even His LOVE is intense. It’s a good intense. Always.

Love,

Ani


Here are a few favorites from Christmas, Veiyah, and Crazy Iowa Snow!!










This is Veiyah's Gang sign...You have to be initiated, but that's just by kissing her, so it's not hard...sooo worth it~ I luv U 2 Veiyah, and when I dream I flash our gang sign too!!

































The shirt says it all... (cousin Coen holding baby Veiyah!)

Veiyah is HOME!

Mute the Music Player to watch!


We are staying at my parents to get as much help as we can for now, but wanted to share with you the joy of our New Year!! What a way to start 2009!

Details soon to come...



Love,
Ani