11 Months Strong

It is just craaazy to think that Kenzie will be turning one in only a month!! In one sense, it seems impossible that she could be turning one already. But then again, looking back on all that she's gone through (and that we've been through) in the first 11 months of her little life, it seems like forever ago that she was born!! Funny to think what life was like without her... can't even imagine it now. She fills us with so much happiness and joy!

Since our last update, things have been progressing pretty smoothly. We only hit one little bump in the road--Kenzie got sick for the first time! Boo! But all things considered, it could have been much worse. To make a long story short, she was off and on sick for three weeks. First with a fever and irritability, then with a stomach bug. But thankfully no flu or respiratory sickness (especially RSV), which is what we are definitely trying to avoid! Her lips and fingers turned a little blue which is a bit disconcerting, but apparently not uncommon with a heart baby. Other than some sleepless nights and a billion baths and outfit changes from blowouts, we got off pretty easy! It's a pretty substantial blessing that she avoided sickness until her 10th month!!

On a happier note, she's growing, growing, growing and doing sooo well! At her last doctor's appointment, they said that she no longer even rates on the preemie scale--she's registering in the 20th percentile on the "regular" scale for size! Her last sedated echo went well (the process itself wasn't so great, but the results were positive), and the doc said everything is looking as it should in there. Her neurologist and therapists are also pleased with her progress. Although she's still behind in terms of crawling, standing, etc, she's improving every day. She also got her first teeth! Four of them are in at the moment... adorable.

We're just loving every second with her. Seems like she learns new things every day! A few fun things she's up to now: she can clap her hands, give high fives, wave, sometimes put food in her own mouth, sit up for long periods of time by herself, she rolls all over the place, scoots around (the girl wants to crawl so bad--you can just see it), drink from a sippy cup on her own, etc. Did I say in our last post that she was sleeping through the night? Uh, not sure what happened there because that's not happening anymore. Oh well. There's no other reason I'd rather be up at night! She hasn't said any intelligible words yet, but she's constantly talking with "oooos," "aaahhhhs," and "eeeees." (The last sound is usually accompanied with a cheesy, scrunched-up face smile--see below.) Luv it!



Her favorite thing to do is pull all the wipes out of the box (yes, I let her and then I stuff them back in there so as not to waste them). She's obsessed with carrying her puffs around with her in her little hands. Sometimes it will be hours after a mealtime and I'll find them tucked away in her tiny fists. The only way to remove the soggy leftovers is to pry them out! She is in love with her paci--she will somehow manage to scope one out wherever she's at. She finds it hilarious if we yank it out and pretend it's ours--but she'll grab it right back and pop it in that sweet little mouth of hers. Reading is one of her favorite pasttimes. If she really likes a particular page she'll hit it incessantly with her hand--not quite sure what she's doing there but we find it amusing! She's a total ham and loves attention! But best of all, she's constantly smiling and laughing. Nothing brings us more joy!

On a little side note, Kenzie's heart surgeon recently received the award of Columbus' practitioner of the year. He DEFINITELY deserves this honor and SOOOO much more! We just can't speak highly enough of him and are BEYOND thankful God brought him into our lives. How can you ever thank the person whose dedication and skill gave your baby a chance at life!? Anyways, if anyone out there is seeking a pediatric heart surgeon, PLEASE contact me!

Ok--here's a little video and a few pics of our girl! Thanks so much for checking in on her!!



 



 

 

 

 



 



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!