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!

 



Home Sweet Home!

Our sweet baby girl is HOME!!! We can't even BEGIN to express our excitement and gratitude for this! It seems absolutely surreal that we actually have our little peanut here with us at home... our joy is INDESCRIBABLE!!!

So quick recap on how we got home:

In previous posts we had mentioned how she had to learn to eat before she could go home. This seems simple enough, but for a baby who has only 3 heart chambers, it can be very difficult. Her heart is working extra hard and even sucking on a bottle burns lots of necessary calories and takes extra effort. Many "heart babies" (as they are called) end up going home with feeding tubes and remain on them until their next surgery. We were praying that she would pick up on it quickly... we sure didn't want to leave with a feeding tube! Well wouldn't ya know that within a few days, super baby was guzzling down milk like a champ! Way to go girl and thank you Lord! Another incredible answer to prayer! Also, all of her "discharge" ultrasounds and scans came back perfect. Even ones that we didn't even know to pray for. After her head ultrasound came back clear, our doctor mentioned that for such a little preemie to have gone through the majorly intense surgery that she went through and to come out with no brain bleeds or other issues was definitely a "party" (as he put it). Forget the party... it's a blessing! And as for her bilirubin levels, well they dropped significantly from 19 to 13 right before we left! She is still on medication for this and will be going back for appointments with GI to monitor it, but the fact that they dropped that much makes us optimistic that there are no deeper GI issues. Sooooo amazing!!! So after all of these updates came in, we got the word last Wednesday morning that it was time to go... and by 10pm Wednesday night we were packed up, loaded in the carseat, and ready to set out! I sent Ryan and my dad the pic below when we first got the word and titled it "Bubye Nationwide!" (By the way, they were absolutely phenomenal and there's definitely no better place we could have been, but we were still of course ready to leave!) One of my favorite parts was removing all of her leads and her last IV and FINALLY being able to hold her without any tubes or wires! SUCH an awesome thing!!

 

As we look back on Kenzie's entire journey thus far, it is SERIOUSLY incredible that this tiny girl is here with us--it's an absolute testament to God's healing power and graciousness! This was the girl who couldn't even begin to breathe on her own a few weeks ago, who was intubated from the second she was born, whose heart took up about 80 percent of her chest, whose oxygen saturations would drop to dangerous levels at movement as simple as a diaper change... and now, aside from the scar on her chest, you would never even know something had ever been wrong with her! We are absolutely certain that it's nothing short of a miracle. Even the way she recovered has been a miracle in itself... surpassing all expectations. We will NEVER stop proclaiming all that the Lord has done for her and for us! Although she still has a long road ahead with her second of 3 open heart surgeries coming up at 6 months, this first phase was by far the most precarious of them all, and God sustained her beautifully.

Having her home is pretty much the best thing in the entire world and we're thoroughly enjoying every moment! As I was unpacking clothes for her and beginning to set things out in her room, I just couldn't believe that she is actually here with us... and that I was actually getting to do all the things for her that I wanted to do from the beginning! SUCH an immense blessing and sooo much fun!! As thankful as we would have been for her had she not had all these issues, there is no match for how thankful we are for her now! 


We're still working on her room, but the two pics below are frames I made for her that have such a special meaning to us. The first one is a conglomeration of all the verses Ryan picked out for me to give me comfort and confidence when we first found out about her heart. They are layered over our "paint heart" which is the result of a random occurrence. Before she was born, we had decided not to decorate her room or anything, but we did want to go ahead and paint it. As Ryan was painting, he removed the paintbrush from the plastic wrap it was in and this heart was what was left on the wrap. Kind of a neat thing to see. The second frame is a mix of phrases and verses that I cut out from cards that many of you sent saying that you were praying for Kenzie. Absolutely love it! We always want her to remember how many sweet people prayed for her and what an amazing answer to prayer she is!

 

The next few months will be a transitional period of getting her ready for her next surgery. Though her surgery was very successful, it is very temporary and will only function for so long. Although she is at home, she is being monitored daily by the hospital through a system of of checks that we log carefully all throughout the day. She will still of course be going in quite frequently for appointments, but this is all nothing compared to having the privilege of having her with us at home! We're dying to get her out and introduce her to everyone, but it will be a little while before we are able to do that. Soon enough though!

The road certainly doesn't end here, but God has brought her through so many obstacles already and has led her down an amazing path. We've said it before and we'll say it again over and over---THANK YOU all from the bottom of our hearts for praying for her and for your continued prayers for her! There is no doubt in our minds that God has heard her name over and over and has answered those prayers. Our greatest desire is that her life will glorify Him and that her story will be a testament to His power! In the words of Mary from Luke 1:49, "For the Mighty One has done great things for me (us)--holy is His name."

Here are a few pics from being at home!

Bilirubin Levels Down!!

Quick update! We just heard that Kenzie's bilirubin levels are down to 18! We are SOOO EXCITED... PRAISE GOD! Also, her oxygen saturation has been variable over the last several days, so she is getting a blood transfusion here soon to up those sats. This will be a great thing for her and will help her so much w/ energy and learning to eat. There's even talk of her going HOME soon and then following the GI issues outpatient!! (Carseat trial below--they gave us a special carseat since she's so tiny!) We are BEYOND thrilled to see what God has in store for us and for her over this next week!!

 

Prayer request for bilirubin and jaundice levels!

Hello friends and family!!

It's been amazing to see how little Kenzie has grown over the last several weeks! The power and presence of God in her life is amazing and it's such a blessing to have so many lifting up our little girl in prayer to Him!! Thank you and let's praise God together in the name of Jesus for the answers to our prayers! Cool story about Kenzie's journey so far-- one of the doctors from the CTICU came in our room Tuesday night and mentioned how great she looked for "being the sickest kid in the hospital a few weeks ago"..... we are so thankful!!! Praise God!!

One thing that we've been focusing our attention and prayers to lately has been Kenzie's bilirubin levels (Jaundice). Per our previous post over the weekend, this isn't the type of jaundice that's resolved through phototherapy (under a lamp), but instead is most likely rooted to something in her blood or liver. Last week her levels were in the low 20's and were beginning to drop (reaching about 18), but have since then gone back up to around 22. We've received a lot of different opinions by several doctors but there hasn't been a lot of progress. Please pray for reduced bilirubin levels and for wisdom for the team caring for Kenzie! We've heard that there's a chance that this can be connected to something very serious where she'd need surgery on her liver, but that it's most likely just going to take a while before they begin to see these levels drop. Please pray that it's nothing serious and that there aren't any side effects of carrying this for multiple days/weeks!!

On the side, if you could also pray for peace/rest for Tiffany and I, we would greatly appreciate it! There's no doubt God is at work!! Thanks again for all your prayers!

Praise God for boring!!

Hey all! Sorry for the delay in the update! Since last Saturday we've been extremely blessed by mostly good updates! Kenzie has continued to progress nicely and is healthier and healthier every day! They moved her to the stepdown unit of the CTICU today, where kids who don't require as much attention go before they're able to go home! The idea of taking our little girl home with us in the next week or so is absolutely amazing! Tiffany and I both were holding Kenzie today and with tears of joy we were thanking God for just getting Kenzie to the point where she is!!! She is truly such a gift and we hope and pray her story is a testimony of God's miracles and that her life is a picture to this world of a surrendered follower of Christ! To Him be ALL the glory!

In terms of updates and prayer requests- there are two main things right now. Besides Kenzie doing so well, another reason why we were moved to the step down unit was because of infections here at the CTICU. These kids go through so much and the little infections can be a huge setback in their progress. Fortunately Kenzie doesn't seem to be sick at all besides the normal recovery from open heart surgery, but there are several children here that we've met (both them and their parents) that are going through a tough time. Please pray for each of these sweet little ones (Sonya, Abigail, Musa, Conner, and little Judah down in Cincinnati), that God would continue to protect them from infections, heal them from their heart defects, but in doing so would draw them all closer to Himself through a relationship with Christ someday (by far the most imporant)!! Tiffany and I were talking before Kenzie was born about how the worst ending to this story is not losing Kenzie at an early age, but losing Kenzie later in life and her never knowing and trusting in the saving power of Jesus Christ!

Please also pray for Kenzie to start feeding on her own as opposed to the feeding tube that she currently has going through her nose. Her bilirubin levels have been at around 18 and the typical levels are at 1. Unfortunately, this isn't the type of Jaundice that can be resolved by sitting under a lamp for 24 hours, but instead is caused directly by the liver. These levels have gone down from 22 earlier in the week and can continue to come down on their own if her body gets enough milk. Prayers are definitely appreciated for her feeding and bilirubin levels!

In other news- I'm glad to see that our little girl got good looks like her mama even though everyone says she has my nose. Maybe we're biased, but we believe that she's absolutely beautiful! Here are some pictures taken over the last few days! Love you all and so thankful for your prayers!