No Re-Admission for this Girl!

So I'm an idiot and I just realized I never updated the blog after our appointment last Monday! I get confused between updating both facebook and the blog!! Ahh! Anyways, we did NOT have to be re-admitted on Monday as her echo, x-ray, and EKG all came back perfectly clear! YAY!! Her cardiologist said she looks (and I quote) "perfect" and that there is absolutely no extra fluid in there. There is no doubt in our minds that that is a miracle based on how much she was draining when her tube fell out!! He said her heart is functioning just as it should, and everything looks great! We were absolutely thrilled to hear this news, and walking out of there after her appointment knowing we wouldn't have to stay was a totally amazing feeling!! As for care required at home, Kenzie is only on lasix twice a day and her usual aspirin. We clean her wounds once a day, but other than that, she is back to her old self!!

After being home for a week, she is just as sweet and happy as ever. In fact, I think she's even happier than before she had her surgery, if that's even possible! She runs around all day literally just laughing--it's the sweetest, best sound in the world to this Mama's ears! We're still trying to keep her away from large groups of people, but she's been able to have a few visitors and go to a few places, which she is loving! We even made a little campfire in our firepit last night and she was LOVING having s'mores for the first time ever! It is amazing that she had open heart surgery a month ago, because looking at her, you would never know it. We're so grateful for her continued health and every day is an absolute blessing! A lot of people have asked me, "so does this mean she's done for good?" The answer to that question is that we don't really know. She'll probably need heart catheterizations now and then for various reasons, but as far as more open heart surgeries, we can't really say. For now, her three staged cycle is complete, and Lord willing, this should last her a very long time. She'll just continue to be monitored and watched to see how her heart is doing! We'll just take it one day at a time and continuously praise God for all He has done for our sweet girl! Here are a few pics from being at home!

Checkin' herself out

After her appointment Monday

Goofy

Never seen someone so happy to be at the grocery store--freedom!

Yummy mashed potatoes from Big Shell

S'more faced girl!

Dancin' around

Happy girl!

HOME!!!

Well, we couldn't be happier to announce that we were able to come HOME yesterday!! YAY!! Praise the Lord!!! After a crazy turn of events, what everyone thought might be an additional week or more in the hospital turned into two days... and voila! Here we are at home!! We are certain that this was nothing short of a little miracle and an extra blessing from the Lord. I seriously cannot express how wonderful it is to be home, and it is very obvious that Kenzie is thrilled to be here and just loving every minute of it! Three weeks stuck in a little crib is a LONG time... especially for a two year old!

After our last post, Kenzie was still going strong with her draining, and was showing no signs of stopping. Her new tube which had been placed in her right side to remove air had done it's job well, and no more air remained on that side. That tube was still draining a small amount of fluid, but nothing compared to the center tube, called the mediastinal tube. This one was consistently draining 3 to 4 times the amount they would like to see before removing it. And let me tell you, that is no small amount! She was draining 120 ml's per day, when the desired amount was 30 ml's. Every time the docs would come by in the morning, they would just say, well, it's still going strong---hang in there! Talk about a bummer!

On Wednesday of this past week, my mom and I wanted to take her for a walk. We took her out of the crib and put her on the ground, and all of the sudden, her mediastinal tube just fell right out of her belly! This isn't something we would ever expect as these things are sown in, and when they are removed it is quite uncomfortable and painful. She didn't even seem to notice, and didn't show any signs of discomfort. At first we were totally freaked out, but the nurses did a great job of quickly patching it up so that air and infection couldn't get in there. After the initial surprise, we were pretty bummed because we knew that this would set us back even farther. She would have to get a new tube placed, which would take us down the whole route of not eating for awhile, sedation, procedure to place the tube, sleeping off the sedation, growing accustomed to the new discomfort, and trying to get her appetite back up after being on the pain meds. And then after that, she would just continue to drain as before. At least that's how we thought it would go.

The doctors took an x-ray of her chest later that night, so that they would know where the fluid was accumulating to place the tube. Yet when the x-ray came back that night, there was no fluid in there. Huh? Based on all that she had been draining, she should definitely have had a decent amount of fluid in there. Over the next two days, they continued to watch for signs of fluid accumulation (breathing hard, low oxygen saturations, puffiness, elevated heart rate, etc), but she showed none. She had her right chest tube pulled on Thursday, and subsequent x-rays continued to show absolutely no fluid. They also did an echocardiogram on Thursday which also showed no fluid accumulation. That night, when they told us if Friday morning's x-ray came back clear, we could go home, we just couldn't believe it! There is no doubt in our minds that God knew it was time for that tube to come out and so out it came and BOOM--no more fluid! Friday's x-ray showed absolutely no fluid and no air, and home we went!

I wish I could express how amazing it was to be able to pack up and take our peanut home! Especially knowing that her staged surgeries are OVER and that she's doing so well. This is something that's been hanging over our heads literally for three years, and it's SUCH an incredible weight off of our shoulders. We're still not completely out of the woods, as we'll be going back on Monday for an x-ray and cardiology appointment to see if she continues to remain fluid-free. We were told it is very possible that we might be re-admitted if it shows fluid has re-accumulated. If this is the case, she'll have to have another chest tube placed, and we'll be back in. Fortunately, she thus far hasn't shown any signs of respiratory distress and we'll just continue to pray that we get the "all clear" on Monday. I was told to pack a bag just in case, but we're definitely praying that isn't necessary--especially for her sake as I think that would be really traumatizing for her to have to go back in. And for us!

Since being home, she has just been on cloud nine. She's running around, dancing, laughing, and totally back to her happy-go-lucky self. It is the biggest joy in the world to see her so happy, and to know that she is DONE!! Cannot thank the Lord enough! I'll update on Monday after her appointment. Lord willing, we'll be in and out and back home! We'll still be in seclusion mode for awhile, as she still has open wounds from her chest tubes and is continuing to gain strength and recover completely.

We can't even begin to express our gratitude for all of your prayers, messages, meals, gifts, and overall support that we've received over the past few weeks. We are truly blessed beyond measure with INCREDIBLE friends and family! Love you all!! There's NO WAY we could have done this without all of the help we've received. Here's a few pics right before we left... someone was happy to be going home!! ;)

Still Draining...

So it's been another week and we're still here in the hospital! We hit a few bumps this week, but we also gained some good ground and it looks like we're back on track and continuing to move forward.

Since our last post, Kenz has began eating and drinking fully and is back on her normal schedule in regards to that. No throwing up or anything along those lines, so that's great news! Poor little thing is definitely scrawny though, so we need to get some meat on those bones! :) Thanks to the wonderful meals we've been provided from friends and family members, we're on our way! 

At the beginning of this week, the doctors decided to pull one of her chest tubes because it had basically stopped draining fluid. Unfortunately, some air leaked into her right side, so as soon as we got one of them out, we had to have another chest tube placed in next to her right lung to allow the air to escape. She did very well during the procedure (she was out of course), but it definitely set us back a few days as she took several days to recover and get back to where she was. The new tube definitely bothered her in the beginning, but she seems to have adapted to it and as long as she has some pain meds in her, she doesn't seem to mind it too much. As soon as they inserted the tube, the doctor said the air just rushed right out, and the x-ray showed the air pocket all but disappeared within minutes. However, the chest tube remains in because there is still fluid coming out of that one as well, so for now, we are still going strong with two chest tubes continually draining fluid. We're not anywhere close to the level she needs to be at to be discharged, so it looks like NCH will be our home for yet quite some time.

Although it was definitely a bummer to have another chest tube put in, we also took some positive steps forward this week (literally). ;) Kenzie is officially up and walking, and just like we predicted, she's moving around as if she owns the place! She was a bit shaky at first, and scared, but as soon as she realized she could walk again, she just went straight out the door and began roaming the halls, chest tubes and all! It was such a blessing and a joy to see the huge grin on her face as she walked towards me for the first time---it was like seeing her learn to walk all over again! As she walked past the nurses' station, she gave them a big ol' smile and wave and they all clapped and cheered for her---so sweet!! She goes for about one or two walks a day now, and is really doing phenomenal in that area. She's definitely still very weak and her little skinny legs get tired and wobbly after about one lap around the floor, but she's getting there! Really the biggest thing we are now waiting on is the draining to stop so that we can go home!!

We are praising the Lord for continued progress and healing. Although we aren't super excited about spending more time here, it's nothing compared to what it could be. Her heart is still functioning perfectly and her oxygen saturation levels are in the upper 90's and haven't dropped at all. Our biggest prayer requests now are that she remains free from any type of infection (always a risk with chest tubes), that she continues to drain fluid quickly, and that there would be no more air build up on her right side (because if so, it would show that air is leaking in there from the inside, not the outside). She will probably have an x-ray soon to make sure that is not an issue. Otherwise, she is still the super happy, super sweet girl we know and love, and seriously she is such an amazing patient. Although she doesn't like the doctors and nurses, when they are not in the room she just plays, laughs, and has a grand old time. As always, here are a few pics!

After her procedure

First time standing up---just happened to be about midnight when she should have been asleep!

Havin' fun

Tea, anyone?

Walking!!

Princess Kenzie in her royal robe! ;)

Recovery Day Six!

So it's almost been one week since we came in here for Kenzie's surgery. Hmmm... one week... really?? Feels more like a month to me! ;) Regardless of the way that time moves at a snail's pace here in the hospital, Kenzie is doing wonderful and we couldn't be happier!!

On our last post we had mentioned that she had extra fluid in her right side where her chest tubes were not located and asked for prayer that that would go away so that she wouldn't have to get another one. Well praise the Lord, it has gone away and she shouldn't need an additional tube placed! We had a rough few days mid week with lots of throwing up, screaming, and just general awfulness, but thankfully she has improved greatly over the last few days.

She finally is able to drink and eat a bit which seems to have improved her greatly. Sorry if this is TMI, but she also did a ton of pooping, which is FANTASTIC as constipation is a major issue when one has been on so many pain meds. Weird as it is, we're praising the Lord for poop! ;) She is still really scared of doctors and nurses, but has at least improved somewhat in this area and actually lets some of them listen to her heart without screaming her head off at them. She has even gotten better with the horrific blood draws/labs and dressing changes that are so not-fun. What a trooper!! She still dreads her meds, but has really been doing a better job of not spitting them all out as we give them to her (still lots of screaming involved though). And as for drainage, she is still outputting a lot of fluid but at least they have seen a downward trend. They said they have no way to predict how long it will take her to finish draining, but it doesn't look like it will be anytime in the near future. Although that's a bummer, we're just beyond happy that she's eating/drinking/pooping/etc.  The draining, although a nuisance, isn't supposed to be dangerous or anything.

We attempted to get her out of her little crib twice since moving to step-down, but neither time was too successful. We took her on a little wagon ride around the floor, but her heart rate sky-rocketed and her sats dropped big time, so we think she must have been in pain (although she really didn't show it too much--I'm telling you, this girl is tough)!! This morning we tried to stand her up so she could get her "sea legs," but she cried big time and we put her back in bed! Oh well! It is good for her to try to get up to help her drain, so we'll keep trying. I'm sure she'll be walking around like she owns the place in no time with chest tubes and all!

Although it's definitely not easy being in here, we are SO incredibly pleased and thankful for her progress and continued healing! It is such a joy to see this little girl smile and laugh in spite of all that she has been through/is going through. We've also been bombarded with food and presents for Kenz, which is just such an amazing blessing!! As always, we are so grateful for your continued prayers as we continue the process of recovery!! :)

Grandma and Daddy

Sweet Face

Yummy Popsicle

Playing on the Kindle

Just chillin'

Our "spot"---Yes, I sleep in this crib with her. It's quite uncomfortable ;)

Too cool

Playin' toys

Playing with Grammy

Cutie

Who wouldn't laugh at this

Checkin' herself out

Laughin' at Daddy

Precious Girl

Recovery... Hopefully for the last time in a LONG time!!!

This is going to be quick and messy because I only have a limited amount of time until peanut pie wakes up! First of all, Ryan and I are INCREDIBLY grateful and humbled by all of the prayers, texts, messages, and support we've received by everyone in regards to Kenzie! Seriously it is SUCH an amazing thing to know that our daughter is being lifted up by so many and that Ryan and I are being surrounded by so many---it is truly indescribable! There is no doubt in my mind God has heard those prayers and has been providing both strength to Ryan and me and healing to Kenzie. God has been so gracious and we couldn't be more joyful over how everything is going. Kenzie is in the process of recovering and is for sure one tough little cookie. Overall she's doing really well, but of course there are always bumps in the road. Fortunately those bumps haven't been too big!

The first days post op were honestly a lot better than we expected. It is always indescribably awful to see your precious little one go through something like this, but compared to her last surgery we were pleasantly surprised at her initial few days in the ICU. Last time around, you could definitely tell she was in a lot of pain following surgery, but this time she seemed much more calm and sleepy. Not to say punkin hasn't had to endure a lot, but it has for sure been a pleasant surprise and answer to prayer!  Of course it wouldn't be an official hospital stay for us without something happening to scare us to death, but fortunately this time around it was quickly assessed and fixed. Her second night in the ICU she woke up screaming her head off and shaking so violently she was convulsing. Obviously we were beside ourselves and thinking she was having more seizures which could mean another stroke. After trying to calm her for about a half hour while the nurses checked her out she snapped out of it and became responsive again. Hearing her say "wuv ooo mamma dada" was the best sound I have ever or will ever hear again!! We think it was kind of a combination of a crazy night terror, and then waking in a scary environment and being completely terrified. :( Ryan was sitting bedside at the time, but she couldn't see him. So we fixed this problem by having me sleep in bed with her. As I write this right now I'm sitting next to her in a baby crib as she snoozes--it's not weird or anything! ;)  Besides one other little mishap, most of our time in the ICU went very smoothly. The staff there is absolutely top notch and they took phenomenal care of our girl! We can't say enough about our surgeon who we LOVE LOVE LOVE and the awesome staff at the hospital! SO blessed to be here!!

Yesterday we moved from the CTICU into stepdown, which is great news. Her biggest issues now are her continual draining of fluid, her fear of doctors and nurses, not being able to eat or drink anything, and not wanting to take her meds. She still has both of her chest tubes in and is draining a lot. She has a bit of fluid on her right side, which is the side where her chest tubes are not placed, so if this grows she'll have to get another chest tube. Please pray this doesn't grow as that's just one more thing she doesn't need!! She hasn't eaten really anything since her surgery and has thrown up what little she has eaten. This could be because her pain meds were possibly making her nauseous and then her stomach just isn't used to having anything in it. She was just weaned off of her major pain medications and is currently just on motrin for anti-inflammatory, lasix for fluid, tylenol as needed for pain, and some stuff for her tummy. We think this is pretty impressive--three days after having open heart surgery and she's only on tylenol--which she hasn't even taken yet! I take that when I have a little headache.... ;) Anyways, we are praying that she will not feel nauseous anymore so that she can eat and hold some stuff down. As for overall pain, her chest tubes don't seem to be bothering her too much, but she hasn't really done anything other than lay down or sit up for a few minutes. Hopefully she will continue with that pattern. The downside of being a two year old in the hospital is that we can't explain anything to her, so she's just terrified every time a doctor or nurse even approaches her bed. She either screams or closes her eyes to make them "disappear." Even the therapists who come and bring toys and don't even touch her totally scare her. She also hates her medications and it's torture trying to get her to take them. Prayers for her to begin taking her medicine willingly and to not be afraid of the doctors and nurses would be much appreciated!

It is SUCH a blessing to see her sweet, happy little self coming back. She's sort of lethargic and tired a lot of the time, but after she's had a good nap, she's been playing and having fun. She's certainly been spoiled by family members as she has more presents than she knows what to do with! Too fun!! And Grammy, aka "Me," is here to take great care of both her and us! We LOVE the sound of that sweet little laugh as she plays and as Ryan does goofy stuff to make her giggle! God has been incredibly gracious to us throughout this whole process! Praise the Lord!

It's an amazing feeling to be on this side of surgery number 3--something we've had hanging over our heads for 3 years. Now all we have to do is get this little girl eating and drinking, and get all of this fluid out of her. We're not expecting to get out of here anytime soon, but hey, God can do anything! As always, your prayers and messages mean the world to us and we are SO thankful for you all... and for your love and concern for the Kenzinator!

Kenzie's Surgery Update - 9-15-14

Quick update on Kenzie to let everyone know how she's doing. She's now out of surgery and the surgeon said everything was smooth as silk. Her operation took 5 hours and she was just wheeled up to the CTICU. She doesn't seem to be in too much pain since she's on a good dose of pain meds, she's sleeping most of the time but wakes up from time to time a little scared, but moves and talks enough for us to know she's ok! Praise God!!! Her oxygen levels are at 100% which is a first for her in her life! All of these things are an absolute answer to prayer and we thank you for your love, support, and prayers! This is a short post but wanted to make sure we were keeping our prayer warriors updated!!

She has two chest tubes in for drainage, and besides the discomfort and being scared she's doing great for it being the day of her surgery... We are grateful!!

Blessings to you all!!

Open Heart Surgery Scheduled for September 15th

Well, it's been a whirlwind of a process, but Kenzie is scheduled to have her third open heart surgery in just two weeks on the morning of September 15th. This has all come about rather quickly, as we were thinking just a few weeks ago that we would wait until next year for this surgery. After talking to her cardiologist and surgeon, it was determined that it doesn't really matter medically whether we do it now, or next spring (it can't be during cold and flu season), but it just has to be done before next summer.

Of course neither of us want her to have it EVER, but that's obviously not an option. After weighing the pros and cons, we decided it is more advantageous to do it now. I guess it's a good thing that there isn't too much time before the actual surgery--less time to gut wrench over it!

She's scheduled for the first time slot in the morning on Monday, September 15th. The actual surgery is called the Fontan, and is supposed to take about 5-6 hours. Recovery on the other hand, waaay longer! They told us to expect to be in there about 3 weeks... possibly even a month. Because of the way this particular type of Fontan procedure is done, there is a lot of fluid drainage, so the chest tube has to remain in for quite some time. I'm concerned about how she'll react to this and how this will feel for her to have it in for such a long period of time. (By the way, if there is anyone out there who has ever had a chest tube in for awhile, I would love to know what it feels like so I can have an idea of what she'll be dealing with! Please shoot me a message if you are able!) I'm also pretty nervous about having a two-year old in the hospital for such an extended period of time---especially with all that she will have to endure. It was tough to be in there just two days for her cath a few months ago--so I'm sure this will definitely be difficult.

To say that we're not nervous or scared would be a total lie! Ryan is always the stronger one when it comes to these things, but me on the other hand, well, not so much. Of course we're completely placing her in God's hands as always, but there are for sure still anxieties that come along with it. To see my precious, vivacious girl and think that we have to take her in for this very soon makes me totally sick to my stomach, but we're just praying our hearts out and trusting in the Lord's perfect will for her life. After all, He has seen both her and us through so many trials and difficult situations, and we know He loves her even more than we do! I am absolutely certain God has heard our prayers and the prayers of our amazing friends and family, and so I ask again if you would please join us in praying for our sweet babygirl!

There are a ton of requests in regards to this surgery and recovery, so here goes. As for the actual surgery, please pray:

• That Ryan and I would feel God's peace leading up to and throughout the time of the surgery. (Fortunately, Kenzie isn't of the mindset to understand what will be happening, so we won't even be trying to explain it to her.) 
• That she wouldn't feel any fear during her pre-op time and as she is taken back. 
• That her surgeon, Dr. Galantowicz, would be able to perform the surgery flawlessly, and that there would be no complications at all. ESPECIALLY no strokes!!! (We've already been down that road---NEVER again Lord willing!) 
• That she wouldn't need to be on the heart-lung bypass machine for an extended period of time (the longer one is on, the more risk of clots/strokes). 
• That there would be no surprises or anything amiss---that God's protective hand would be over her the whole time. 
• That she would not be fearful when she wakes up and that God would give her a sense of peace when she knows we are right there with her. 
• That Ryan and I would be strong for her---that we would not show her fear or sadness but strength and optimism. 

As for the recovery, please pray: 

• That her pain med "concoction" would be perfect for her the first time around. Last time, it took quite some time to get the right combination of what works for her to feel somewhat comfortable. Please pray that she would wake up feeling much better than last time.
• That that first crucial night following the surgery would go smoothly with no issues.
• That overall she wouldn't be in much pain and that she would not remember any pain she does feel.
• She has the tendency (quite understandably) to completely freak out at doctors and nurses, etc. Please pray that God would calm her to be able to rest and sleep through that first day/days right after the surgery. 
• Please pray for her overall emotional state. That she wouldn't be too sad, scared, or upset. She is still so young that she doesn't really communicate much, and won't understand what is going on. This is a big concern of ours. 
• That her fluid would drain much quicker than expected, and that our overall time there would be shorter than expected.
• That there would be no unexpected bumps in the road and that we would be able to move out of the CICU to stepdown and then on home quickly. 
• That she wouldn't have to endure too many pokes and prods, and that we could distract her successfully when she does. 
• That mentally she would be back to "herself" quickly. Last time it took her quite some time to return to "her," and it scared me to death. 
• That once we are able to go home, that we wouldn't need to return for another hospital stay because of additional fluid drainage (this is very common with the fontan). 
• Oh and that Ryan and I might be able to actually get some rest while there---not easy!! We'll be staying with her obviously the entire time, so as you can imagine it is an absolutely exhausting experience. Last time we were in the hospital, she screamed every time I went to the bathroom, so I guess I shouldn't drink a lot of water. ;) 

Whew! Ok that's a lot for starters---and I KNOW that there will be more as we go along! One more prayer request---Ryan and I always view these long hospital stays as witnessing opportunities. When you are with the same docs and nurses all day and night, they certainly get to see the "real" you! We hope to always show Christ through our lives and the way that we deal with the challenges and difficulties that come our way. Extremely hard when you're talking about the little person you love most in all the world going through so much! But ultimately we desire to glorify Him through our own lives and through Kenzie's life, even through the most stressful of circumstances. Thank you so much for your love and concern for our angel! I'm sure we'll be posting more updates as the time approaches, but as always, here are some pics of the happy babe!! Love you all!!!