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!

 



 

Continued Progress...

Thank you all for your continued prayers and support! Kenzie's swelling has gone down remarkably from Monday's procedure and they closed her chest completely Friday afternon. The surgeon sat down with us afterwards and said that everything went very well. While he was in her chest cleaning things out, he noticed a major difference in the size of her heart (almost half the size as before) and also mentioned that her lungs looked so much healthier.

They are extremely excited about the progress she has made over the last 5 days. They've completely removed the pacemaker (before it was set at a low setting in case her heart rate dropped significantly), they've started  back up on giving her milk through the feeding tube, they've taken her off a few meds that helped her pee and lower her blood pressure, and lastly have started weaning her off her ventilator!!! PRAISE THE LORD!!! 1 Samuel 1:27 says "I prayed for this child, and the Lord granted me what I asked of him." Even though we're still early in our journey, we are so grateful for God answering our prayers thus far, and so thankful for each of your prayers! He is in control and His will be done! Maybe the primary purpose of all this is for everyone who reads this blog (and those who write it) to come before Him on our knees in prayer, with complete dependency (like little children to their parents)!

Through this entire time I've come to realize that it's what He's always desired. When we first believed in Christ, we realized that there was nothing we could do to "earn" our way to heaven because of our sin. But we learned through Scripture that we are saved by GRACE ALONE through FAITH ALONE, through the sacrifice of Jesus Christ! May we view life through the same lens, in complete dependence upon Him and the Holy Spirit! He knows and wants what's best for us, and we humble ourselves before Him and ask for Him to give us strength and bring healing to sweet Kenzie!

We love you all!

Talking with Mommy

Tiny toes

Hello beautiful eyes!

 

Recovery Time!



Praise God for a successful first surgery!!!! Kenzie went in on Monday at about 1:30pm and our amazing surgeon came out about 7 hours later to fill us in on how everything went. First, he informed us that it was crystal clear that once they got inside, it was very apparent that her tricuspid valve was un-fixable and that the right ventricle was not strong enough to function correctly. In fact, it would have been dangerous to even attempt to fix the valve, so they went down the route of making her heart into a 3 chamber heart. This was a direct answer to prayer b/c we were asking that it would be very clear which direction to go--and it was! Second, he informed us that it was a very good thing that her surgery was moved up to Monday b/c the state of her heart and lungs was getting progressively worse as time went on. So the surgery being bumped was definitely also a blessing! Third, he informed us that everything went well and that Kenzie tolerated the surgery and was doing just fine. As you can imagine, hearing all this was the BEST news in the whole wide world! We were beyond ELATED and more grateful than words can even begin to express!!! We can't even describe how incredible it was to know that God had brought Kenzie through this huge hurdle, and that He had led us to such a talented and gifted surgeon!! TO GOD BE THE GLORY!

Our surgeon let us know that the next 24 to 72 hours were extremely critical as Kenzie's body would be adapting to the extreme changes. There could be a lot of ups and downs with changes in stats occurring quite often. The team transported her upstairs to the bay area of the CICU and spent the next 4 hours getting her set up and settled. We finally were able to see her at about 12:30am, which was certainly the most wonderful thing ever to be reunited with our little angel!

We spent the night there with her taking turns sitting with her, and praise to God her stats remained stable all throughout the night and through the next day! She never once dropped or got to a place where there was need for big concern! Not that this time period was easy or without stress, but she certainly pulled through beautifully!

She is now on the road to recovery, on which there are still a ton of unknowns. Although her first surgery is over (she will have to have two more open heart surgeries--one at 6 months and one at about age 2), she still has a long road of making sure her heart is functioning properly and able to sustain life. We are praying first that her heart recovers and adapts to pump properly. There are also several steps that she has to go through to recover from this first surgery. The first step is getting rid of all the fluid build-up from surgery, and thankfully God has already begun to take care of this! She was so puffy to the point of being unrecognizable, but just since today she's been dropping fluid wonderfully which is awesome! Once her fluid drops enough they can close her chest (it is currently open b/c of the swelling). We're praying that fluid continues to drop at a rapid rate to allow the doctors to sew her up soon! Secondly, she has a temporary pacemaker which is beating her heart for her. This is common for post-heart surgery, and eventually they will attempt to turn it off. The prayer is that her heart continues with the correct beat, and that she doesn't require a permanent pacemaker. Today they turned the pacemaker down  for a bit and they were pleased with her heart's reaction. YAY! :) The next steps include weaning her off the ventilator, teaching her to eat, and then we can GO HOME!!!!

This will be a process but we're hoping for a speedy recovery so that we can take her home in approximately 3 to 4 weeks! As always, we are BEYOND grateful for your prayers, love, and support! We know that God is hearing her name called out from friends and family and has been watching over our sweet babygirl! We will continue to update as time progresses!!

Surgery Tomorrow...

After a tough few days in the hospital, Kenzie's surgery is now scheduled for Monday (tomorrow) afternoon around 1pm. We are so appreciative of the prayers!

Please pray specifically for:

1.) a successful surgery- that the surgeon would know quickly after begiining the procedure what route is the best for Kenzie, 2.) for the surgeon himself since this is the second case of the day for him. Please pray that his stamina would remain strong and that he would have steady hands and wisdom from above, 3.) that Kenzie would remain strong through it and that her body would accept the changes made in her heart, 4.) for a quick and speedy recovery for Kenzie. The recovery typically takes at least a few weeks... it would be a huge blessing to be able to bring her home at that point. Regarding the recovery- please pray that she wouldn't swell up too much and that her body would handle/tolerate the stress that a major surgery can bring to the body.

Happy Easter!!! Praise God for the gift of His son Jesus Christ... may our lives be transformed by His power and love for us, and may we reflect glory right back to Him!!

"Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead"
1 Peter 1:3

A Plan, Patience, & Prayers (An update from Ryan)

 

Hello friends and family. We can’t thank you enough for your continued prayers! We truly do feel lifted up by our brothers and sisters, and somewhat strong through a circumstance that is draining in many aspects. Kenzie had her catheterization on Wednesday and there were both pros and cons that were taken away. The reason for going in was both diagnostic and also hopefully looking to treat the ductus arteriosis (a duct/opening that we are all born with but closes within 24-48 hours after birth). Even though they weren’t able to treat her during the cath procedure, the good news is that we know exactly how her heart responds to the situation and the ductus needs to remain open as it stands, and that surgery is the best route for her.

We haven’t met with the surgeon yet but plan to tomorrow. Others on his team have informed us that Kenzie is tentatively scheduled for next Wednesday the 11th in the morning. One of two surgeries will take place. First, they may try to repair the tricuspid valve if at all possible. This is the preferred route but probably the more difficult of the two. The second will be inserting a shunt, while closing the tricuspid valve completely, turning Kenzie’s heart into a 3 chamber heart instead of a 4 chamber heart. Which path they choose will be a game-time decision once the surgeon is able to see everything with his own two eyes.

Based on Kenzie’s heart condition we sort of knew that she would require surgery. But after spending the last few weeks with this little one, we love her so much and our hearts and prayers flow constantly for God’s healing. We trust God completely— knowing that He is all-powerful and in complete control, perfectly capable of healing her. We appreciate your continued prayers for God’s healing, but ultimately that His will be done! We know that this little girl has a great purpose in life, as do we, as do you, and God wants to use all of this to minister to those who are struggling in their faith or don’t believe in God at all. Our LifeGroup bought us a care package which included a book we read to Kenzie each night called “Bedtime Prayers.” In this book one of the chapters starts by quoting Jeremiah 1:5 in a kid version saying “I chose you. Before you were born, I set your apart for a special work.”

Kenzie has changed our lives and to God be the glory! We pray that her life (a long life on this earth) is the path He chooses to receive that glory, but His will be done! Despite the circumstances, we serve a good, gracious, loving God and we appreciate each of you acting as advocates for lifting up our sweet little girl in prayer to Him! We feel God’s love through your prayers, support, and encouragement! For that WE ARE BLESSED!

Love you all!

Baby Kenzie Is Here!!

This is going to be a "messy" update b/c I want to type as fast as I can so that I can get back to the bedside to hold the hand of my PRECIOUS baby girl!! I'm sitting here on a couch staring at the MOST beautiful creation I've ever seen (as I'm sure any mom would say) and I'm just completely in awe of God's craftsmanship and perfect detail. We are SOOOO thankful to be where we are right now with Kenzie, and we're constantly lifting her up in prayer for healing. We wish we could call each of you up individually who have been praying for her and tell you HOW THANKFUL we are for you and for your love and concern for her. We definitely believe God has been hearing those prayers, and we have so much to be grateful for thus far, although there's still a lot ahead.

So quick recap on how we got to this point:
We went in last Monday for our weekly ultrasound check and who would have known that about 18 hours later we'd have a little one! During this ultrasound, the doctors determined that her placenta wasn't providing enough nutrition and that it would be better for her to come out. Although this was really scary to hear b/c she was only 35 weeks and 3 days old, God provided us with a definite peace throughout the whole process. We know that so many of you were praying and for that we CANNOT thank you enough! We received your texts and later saw facebook messages which was sooo incredible and comforting to read! We were definitely afraid, but family and friends were right there by our side to help us out.

It was always a fear that she wouldn't tolerate labor well with her heart conditions. Fortunately, God watched over her and she was perfect throughout the whole time. After 15 hours of labor (eww) and only 6 pushes (yay!) she was out and in the hands of the NICU team to stabilize her. Being that we didn't know if her lungs would be developed enough for her to survive, the fact that we heard two little cries before she was intubated was the best sound we've ever heard. It took several hours to stabilize her, but she did well and God protected her. She was wheeled into our room not long after so I could see her and then Ryan, my dad, and Kenzie went off to Nationwide Children's. I was kept at the hospital for two more days to recover, which was pretty torturous as I was dying to see her. I finally got to see her on Thursday, which was the most wonderful thing ever to see her precious face and hold her little hand. It's sort of difficult to tell what she looks like with all the puffiness and everything attached to her face, but to give you an idea, she's basically Ryan's mini-me in female form!

Since that time, she's been stable (YAY!) and is doing well awaiting a surgical plan for her heart. She is hooked up to a ventilator at all times as well as about 50 million other things. I'm not going to lie--it's extremely difficult seeing her connected to all these things, but I know it's for the best. But it's all Ryan and I can do not to snatch her up and kiss her all over...she's so sweet.

We are amazed at the staff and the care she received from minute one up to date. Everyone is absolutely wonderful and pays such close attention to detail. They monitor EVERYTHING you can possibly think of, and if just one little thing goes off base, they tend to it immediately. Overall, her stats are very good as of now. Her little heart is beating perfectly and her oxygen saturation levels are on the high end. Thank the Lord!!! When she was first stabilized, her oxygen saturation was very low, so it's a definite blessing that it climbed and has remained stable since. She is actually on a very low level of oxygen, which is great. When she initially got here, there was a concern with her lactate buildup, but thankfully that went down within one day.

The past week has been exhausting but absolutely amazing as we have the immense privilege of being with our little girl all day long. There's absolutely no where else we'd rather be and every second is a complete and total joy. I could seriously just stare at her for hours. We've changed diapers, read her books, talked to her non-stop (even when she's sedated), and yesterday we even got to hold her for the first time. This was definitely the best feeling in the whole entire world. And today, her swelling went down for a short period of time which allowed her to finally open her little eyes. It was SOO fun to see them open as they've been swelled shut the entire time except when she first got here. She's the sweetest, most precious thing we've ever known and we're sooo thankful to have this time with her.

Ok so that's a condensed recap of how we got here, and we just found out today she will be having a procedure tomorrow at 1pm. Up to date, the doctors have been taking it slow to see how she does and to allow her little body to work. She's sort of been in an in-between state thus far. Tomorrow will be the first step in fixing her heart. When Kenzie was first born, she received a medication to keep her ductus from closing as would happen in a "normal" birth a short time following delivery. It has yet to close, which could be due to her prematurity, or other factors, but they need to see what happens when it closes. So tomorrow she will be going to the cath lab to have a catheter taken up through her leg to her heart. They will use a balloon to temporarily close off the ductus to determine how her heart reacts. If it reacts well, they will insert a piece to keep it closed permanently, but if it doesn't react well, they will insert a stint to keep it open.

The risk of this procedure is not extremely high, but I must admit I'm still scared to death. She's already gone through so much, and as a mommy, it absolutely breaks my heart to think of her going through anything else. So friends and family if we could ask you to pray yet again, please pray for this procedure!! Please pray that it would go perfectly with no complications and that they would be able to determine what works best for her heart in regards to this ductus being open or closed. Please also pray for her heart to tolerate the ductus being closed so that the blood flow would be increased without the need for highly invasive surgery. This is not very likely, but we know our God is capable of anything! Also, these are smaller requests, but please pray that her edema (swelling) would go down so that the sweet thing can open her eyes and so that her body would be more comfortable. Also, she was more awake today and her little face kept showing distress in terms of discomfort from her ventilator tube, so please pray that she would be completely comfy and content with no pain or agitation. Thank you!!!

We've already received SOOOO much love and support from family and friends throughout this process and there is absolutely NO WAY we could do this without you! THANK YOU to each one of you!! I'll try to do a better job of updating this... it's so hard to be away from the peanut for more than a few minutes at a time!! Love you all and can't thank you enough!!! Here's a few pics!



Holding Daddy's hand

Huggin' her bunny

"Holding" her as much as I can

Reading a sweet book from Life Group

Talking to my angel

The best moment ever!

With Daddy!

Beautiful eyes!