A Special Day

Today is a very special day for two reasons. One, it's Ryan's and my anniversary. Happy four years to my AWESOME, WONDERFUL hubby! You are the best, babe, and I am immensely blessed to be married to you! Secondly, it was a year ago today that we found out about Kenzie's heart condition. It's absolutely amazing the difference that one year can make...

I vividly remember setting up for our church's Christmas Tea on the same day that we found out about one of her major heart defects. I remember the intense sadness and fear that gripped me that night. Not knowing what would happen to the sweet angel growing inside of me, but knowing that all I could do was place her in God's hands and wait. And this year... well, let's just say things were quite different. I had the awesome privilege of setting up for the Christmas Tea with my sweet baby sitting in the stroller right next to me the whole time! I can't even begin to describe the joy!

It's been awhile since we've updated the blog, but in this case, no news is good news. Kenzie has been progressing wonderfully. She's the happiest, sweetest little thing and we are having a blast with her. She receives OT and PT twice a week to work on her left arm and the areas she is behind, and she is doing great. She hasn't had any more seizures and hasn't had to be placed back on medication. She's a ball of energy and we can't get enough of her rolling, kicking, jumping (in the jumparoo of course), laughing, and smiling. She's eating solid foods now, and much like her father, she sure likes to eat! ;) She's finally sleeping through the night... thank goodness! She loves playing toys, chewing on her passie, and going out and about. In fact, tonight we celebrated our anniversary with her by going out to dinner and doing a little Christmas shopping (see pics below). It's so much fun to see her little personality begin to pop out. Such a blessing! Here are a few pics:



 

 



Home at Last!

It seems like FOREVER since we went in for surgery two Mondays ago! After Kenzie's frightening seizures/strokes last week, we were kept in the hospital several more days for close monitoring and further testing. Although it was awful watching Kenzie endure several difficult tests, pokes, and prods, we were finally released on Monday to go home! Couldn't WAIT to get out of there! We were extremely happy to be leaving having had no infections, a relatively smooth surgery, and minor damage from her strokes.

Thankfully her EEG (basically a full brain function test) returned normal and doctors informed us that they believe she will make a full recovery! This was AMAZING news to hear! Her left arm still isn't moving up to par, but we will work on that. And it's sure a small price to pay considering the damage that could have occurred. We are extremely beyond grateful. As for her heart, tests revealed that it is functioning exactly as it is supposed to following the surgery. Yay--suuuuch a blessing!!!

Right now we are working on recovery. It hasn't been an easy road, but it's getting better! Thank goodness for Mom Joyce being here to help us take care of this little punkin! One of the side effects of this particular surgery is that blood backs up in the brain causing a massive headache. Kenzie was also put on a seizure medication which can have some severe side effects including bad stomach issues, pain, etc. And after a week in the hospital, we think the little sweetie became super paranoid of more tests and pokes--who wouldn't!? Of course since she can't communicate with us any other way than crying, and it has been difficult trying to figure out how and what to do to help her. Today was a great day though and we made some progress. Up until today, she hasn't been "herself" at all. She's been EXTREMELY irritable and unhappy, and seemingly in a lot of pain, which absolutely breaks our hearts to see. After some conversations with doctors, she has been taken off the seizure medication on the assumption that the benefits are not outweighing the risks at this point. Even since stopping the medicine today, we have started to see "Kenzie" come back. She is much more calm, smiley, and getting back to her sweet self. I can't express what a HUGE relief this is to see. We were told to continue to watch her closely for more seizures, and as long as she doesn't have any more, she won't have to be on an anti-seizure medicine. As you can imagine, we are praying that she is finished with that chapter of her life and that things will continue to smooth out.

Although things have not exactly gone as we hoped, we are more than thankful for where she is at this point, and are SO glad to be home. As always, we absolutely appreciate the continued prayers for our peanut!



Unexpected News

Quick update: we had an unexpected occurence last night. Kenzie was shaking in her left leg and one of the nurses said, "I can't stop it, I think she's having a seizure." Nurses and doctors surrounded her for the following hour, trying to determine what was occuring and how to treat Kenzie. They noticed that she wasn't moving her left leg or arm, even when the doctors tested her reflexes. The ICU doctors and Neurologists got involved and after an MRI, results came back that Kenzie had two strokes, which caused some damage to the right side of the brain, which effects motor skills on the left side of the body. As you can imagine, this came as shocking news. They mentioned that these kids are resilient, and can easily bounce back from these events if they aren't reoccuring, but there wasn't any certainty of that taking place. Text messages flowed out, and many people were praying for our sweet little girl.

Through the night, Aunt Shell and Dad Joyce kept an eye on her until 6am to make sure she wasn't seizing anymore (Tiff and I were exhausted in every aspect). Praise the Lord that she didn't!! More doctors came to visit us early this morning, which brought additional updates on Kenzie's diagnosis. They mentioned that although there's no way to tell what Kenzie's final outcome will be, the liklihood of Kenzie having more episodes would be less than her having them (Praise the Lord)!!! They also mentioned that cognitive function comes mainly from the front part of the brain, and the damage was mainly in the back (Praise the Lord again)!!! One other thing they shared with us was that the brain bounces back in these situations if further damage doesn't come through addtional strokes, meaning that the brain relearns how to function and do the things the body requires it to do. The last bit of good news is that her left side is functioning today. Her left leg seems completely functional (unexplainable, yet awesome), and her left arm/hand has improved but is still not quite where it was before surgery (Praise the Lord)!!!

Despite the unexpected (and extremely scary) circumstances, there's a lot to be thankful for! We are thankful for the hope we have in Christ, the hope of Kenzie healing in her brain and heart, and are so appreciative for all the prayers that you've sent up to the Lord on her behalf!

We want to ask that you continue to do so! Please pray for the following:
- That she wouldn't experience anymore strokes and seizures
- That the additional tests wouldn't reveal more medical issues inside her brain/heart
- That she would continually improve motor functioning on that left side
- That she would be able to start doing normal baby things (eating, smiling, laughing, communicating, etc.)
- And lastly, that God would continue to demonstrate his healing power through Kenzie's medical issues, revealing to the world what He alone is capable of doing (for His glory sake)!

So thankful for all of you, and your prayers for Kenzie (and us)!! Love ya!

-Ryan & Tiff

Surgery Successful!

Kenzie's surgery yesterday went beautifully and she is doing wonderful!! PRAISE THE LORD for hearing and answering our prayers in the name of Jesus!!! We are soooo thankful and happy, not to mention relieved!!

After being in surgery for about 5 hours, our surgeon (who is awesome by the way) informed us that everything went as planned and she tolerated the procedure like a champ. She looked MUCH better post surgery this time around! Her chest was closed, she was extubated immediately following surgery, and the swelling was minimal compared to last time. After a long day yesterday and a long night of her being in a lot of pain and discomfort from everything, she finally dozed off and settled down at about 4am. She is one tough little cookie!

Today has been a series of weaning off of different medications, oxygen levels, and taking out lines and such as necessary. She already has had her chest tube removed along with several of her IV/electrical lines, and is on a low dose of oxygen. She is also eating well and although a bit drowsy, is checking out mommy and daddy with those big pretty eyes of hers. And we have already got to hold her! Much better than last time!

It is possible that she may already be moving to the stepdown unit tomorrow...yay!!! God is so faithful and we are beyond grateful! As always, THANK YOU so much for the prayers and support!! Lord willing we will be on our way home in only a few days...AMAZING!



Surgery Scheduled

So we have a date for surgery number two... the big day is scheduled for Monday, September 17, at 7:30am. We went in for an appointment this past week and received the news. This definitely is a little earlier than we expected, but it is apparent that this is the right time for her to have the procedure. She's not gaining as much weight and her oxygen sats are dropping a little, which are both signs that she is outgrowing her shunt and ready for phase two.

The next two weeks will be all about keeping this little girl healthy! If she contracts any type of sickness they will automatically delay her surgery 6 weeks, which would place her in an even weaker state. So with that being said, we are going into isolation mode! No outings for Miss Kenzie until she is all recovered and healthy! Not that we go that many places anyways! ;)

As for how we're handling it, we both are of course apprehensive and I for one am absolutely dreading taking her in that day. But just as with the first surgery, we are again putting all complete trust in God's plan and relying on Him! Although we would of course prefer her not to have to go through this, in the big scheme of things, this step is both crucial and necessary and will help her out so much when it's all said and done. All we can do is pray, pray, pray for our little sweetie!

As for the surgery itself, from what we understand, she will probably be in the hospital for about two weeks. Lord willing, this time around should be less time in surgery, less time on the heart-lung bypass machine, less swelling so hopefully her chest can be closed in the OR, and less difficulty breathing so hopefully her ventilator will be removed before she even returns to the ICU. After surgery number two, she will be much stronger and basically a "normal baby." (A normal baby with half a heart that is!) No more weighing her, checking her sats, or writing down every milliliter of milk she eats!

For our friends and family who are praying for her, if we could ask you to please pray for the following:

• For Ryan and I not to be anxious in the time leading up to her surgery but to just enjoy every sweet second we have with her
• For her to stay healthy and strong throughout the next couple weeks
• That the morning of the surgery would be smooth sailing with her not being able to eat for a period of time beforehand and that all her IV lines would go in easily (she is a tough stick...tiny veins)
• That the surgery would be flawless and without complications and that God would just guide the hands of her surgeon
• That recovery would be quick, as painless as possible, without complications, and that she would be safe from any infections while in the hospital
• That she would NOT have to take a specific medicine that may be needed (more than likely not) which would require us to give her two shots a day for six weeks (don't think I could handle that one on top of everything else)

Thank you SOOOO much!!!! :) We will update with any new info to come! Here's a little video of our happy girl!

Pre-Surgery Scans Scheduled

Hi friends and family! We haven't posted in a long time, but in this case, no news is good news! Kenzie has been doing AWESOME and is growing and changing more and more every day! Since our last post she has had a lot of "firsts." First trip up north to visit Grammy and Pops, first trip down south to visit family in Germantown, first trip to the zoo, first time being babysat by Auntie Shell so we could go out on a date, and so on and so forth. She is truly such an immense joy to us! She now weighs almost 11 pounds and is grabbing toys, talking up a storm, and smiling...always smiling!

Recently we got a call scheduling Kenzie's pre-surgery CT scan and Echocardiogram. We can't believe she is nearing the 6 month mark. It's just amazing how time has flown! It is definitely very scary to think about the fact that she has to have another open heart surgery here soon. We just have to keep trusting that God is in complete control and continue praying for total protection. She has her CT scan and Echo scheduled for the end of August, in which they will sedate her and take images for further review. She'll then be "presented" at something called conference, and they'll decide exactly when to do her procedure. This upcoming surgery is called the "Bidirectional Glenn," and thankfully is more common than her first procedure. It is still a MAJOR surgery, but she is obviously in a much better spot for surgery this time around. During this procedure, they'll disconnect her shunt and connect her superior vena cava directly to her pulmonary arteries.

We'll update with more info after the results of her scans return, but for now, here's a few pics of our precious doll baby. Oh and the first pic is super special because of the outfit she's wearing! ;) Here's why: http://prayerforkenzie.blogspot.com/2012/01/january-25-2012-post-from-tiff.html

At the zoo with cousins Jake and Nate

Chillin' at the "pool"

Visit to Hudson!

Thanks to Brendan for taking this family photo!









Life at Home!!

We haven't posted in a long time, (babies require a ton of work!) but we've been enjoying EVERY single second at home with our sweet babygirl! She is SUCH a joy and a blessing... we couldn't be happier!!

As for her status, we are immensely pleased to say that Kenzie is doing AMAZING and getting bigger every day! Since she's been home, she's gained almost three--that's right THREE--pounds! She's a regular chunker weighing in at 7 and a half big ones. ;) (Well, maybe not, but at least she finally has some form of chub on her little body.) It's funny b/c people still tell me she's tiny, but compared to what she was, she's huge to me! This is SUCH an awesome thing seeing as many heart babies need feeding tubes and have a difficult time gaining weight b/c of the extra calories their heart has to burn. We're sooo grateful that she is eating and gaining so well!! She's also sleeping well and doing all sorts of normal baby things. Yesterday she smiled at me for about a solid three minutes, which absolutely melted my heart. Any parent knows there's nothing sweeter than this! She's "talking," smiling, eating like a champ, sleeping great, she's strong as anything, and she loves being held (of course)! She falls asleep in the carseat everytime, likes going on walks, swinging, and being outside. She's even gone on a few select outings---and aside from the 2 minute scream fest in the middle of Target (yeah, I was THAT mom), she was great!

As far as her heart goes, it is functioning perfectly!! We check her heartrate and oxygen saturation levels every day, and never once has she had a questionable reading... SOOOO awesome! Every doctor's appointment has been great and she's checked out beautifully! Even her bilirubin levels are down to 1.9--which means she's lost her tan and now has that slightly bluish skin color of a baby with 75 to 80 percent oxygen sats. Again, this is another huge thing to be thankful for... there seem to be no longstanding liver issues! Her shunt is working perfectly, and we've only had one slight scare since she's been home, which turned out to be nothing at all! We thought she might have spit up some blood, but it turns out, it was dye from the carseat straps coming off on her sleeper! Ha! Although annoyed at the dumb carseat, we were super thankful for that one! Other than her scar, you'd never know she's had major surgery and that her heart operates in a completely different way from the norm. Her second surgery is tentatively scheduled for around September or October, but this just depends on how she does and how she grows. The bigger she is, the better! Although we of course don't want her to have another surgery, we know she needs it and all we can do is pray for God's continued care and protection over our sweetie.

Looking back at pictures of when she was first born and we weren't sure what was going to happen, it is absolutely incredible to see where she is today! Every time we look at her, we see God's goodness and answered prayers. And every so often I just tear up staring at her and am in awe of the fact that we have the immense privilege of having her here at home with us. What a joy!!! Here are a few pics of Kenzie at home just being the sweet, happy baby that she is!