Good News!!

After we got home on Friday, Kiley immediately got her appetite back and was eating everything in sight! She really just wanted to get out of that hospital. She took a good nap in her own bed, and we are both so glad to be home!!

On Saturday, she was running a low grade fever, but her discharge papers said only to call with anything above 101, so we just kept an eye on her. She was eating and drinking fine!

She is loving being home and being able to play with her toys and her sister and most of all, swing!! We still have her on her meds, but she isn't showing any signs of heavy breathing or fatigue.

On a side note, we have renamed Presley to the "bag lady". This was two separate occasions and she did this all by herself!

You can't even see all of the purses and bags she has on.

She even has two bug cages at the bottom of the stack and they clank every time she walks. It is too funny!

I finished updating the blog with pictures from the last full day at the hospital. We would like to thank everyone who continued your prayers for us the second time around in the hospital. We were actually there longer the second time. It was so unexpected to relive our nightmares all over again. Our family really pulled through for us taking care of Presley, giving us a break to come home and shower, and bringing us meals to the hospital. We cannot thank you guys enough! We hope that is our last stay in the hospital!!

And now for the best news ever!! We had Kiley's echocardiogram today at 1pm and there was NO FLUID around her heart. It looks like what was there on Friday is even gone! It was such great news. We are taking her off IB Profen and going to continue lasix twice a day until Saturday. Then we will go down to once a day and then go back for hopefully just one last echo on Monday! Thank you for all of your prayers!!

Back in the hospital -Day 5

12:06
The IV is out, her wound is dressed, and we are out of the hospital!! We just got home and we are playing. I will add pictures to the blog when the girls go down for their nap. Thank you for all of your prayers. We will continue to pray that we won't end up back at the hospital any more!

10:18am
Dr. Thomas just came by. He said she has a little fluid around her heart, but not enough to concern him enough to keep her here,so we get to go home today! He said he is about 80-90% sure the fluid won't come back. The nurse is about to take her IV out and then the "wound lady" is coming back at 11am to look at her incision one more time. We will continue meds and then we will go back to the cardiologist on Monday to check for fluid.

9:05am
They just came in and did the echo, so we are officially waiting on the results. Kikey finished her yogurt and banana.

8:02am
Kiley and I had a good night. As good of a night as you can have in the hospital of course. We just had a few minor interruptions. Kiley only woke up once around 3am but went back to sleep pretty quickly. She woke up this morning with a poopy diaper which is good. They came in to do her vitals and I told her that we need to be on our best behavior today so that we can go home. Before Kiley's breakfast came, I could tell she was looking around for something to eat so I went ahead and mashed a banana. She took a couple of bites and then her food came and of course she pointed to the yogurt. I snuck the banana in the yogurt and she is taking bite here and there. Each time she takes a bite, she perks up more and more. We are waiting for her echocardiogram and our friend's Lisa and Addie are going to come visit us! I will post again soon!

Back in the hospital - Day 4

9:31pm Kiley and I are in bed for what we hope is our last sleepover here in the hospital. I love all my time with Kiley but we will both be more comfortable at home! Kiley still doesn't have her appetite back. She did eat her yogurt and applesauce and took a couple of sips of water. Hopefully if we can go home and have a change of environment, she will get her appetite back. Kiley and I colored for a little bit and then Marmee came. While Marmee was here with Kiley, I went upstairs to visit some friends who just had a sweet little baby boy named Cash. Congrats to Jae and John! When I came back Kiley was asleep in Marmee's arms.

Kiley woke back up, so we got some warm jammies on her.

She started getting a little comfy on Mommy's bed.

She thinks if she lays there and looks cute, I won't put her in her crib.

The nurse finally came in around 8:30 to give Kiley her meds. As of now, the only orders for the morning is her echo at 8am. Hopefully we can decline all vitals and meds and get a good night sleep.
I just got off the phone with Daddie and he and Presley had a fun date night. They went to gymnastics and then to the pool and then had dinner. Very productive night :-).

5:55pm
I made it back to the hospital. Kiley had just woken up from her nap and was making her rounds on the floor. Grampy said she slept almost 2 hours. Kiley ate another grabber and then we played a little. I brought her back to the room and she ate some crackers and had maybe a sip of water and she started to perk up. Not 5 minutes later, her cardiologist came by. He listened to her heart and said it sounded good. He said they will do the echo first thing in the morning and if it looks good we should be able to go home by lunchtime! Lots of prayers that no more fluid has built up! We went to see the "bead lady" to catch up on all of her beads of courage that she has earned. We will add them to her necklace and take a picture! Kiley does not want to sit in this room any more. She keeps going out and hanging out at the nurses station. She goes room to room and is making a lot of friends. I tried to distract her by coloring.

Marmee is on her way here to spend some time with us before bedtime. Kiley's dinner just arrived. I ordered quite a variety so we will see IF she eats anything...

2:44pm
Unfortunately, I did not have much luck at breakfast. Kiley still will not drink anything and she only ate part of a yogurt. Mikey came by the hospital in between his appointments around 9:45am and sent me home. I think he could sense my exhaustion. Kiley was up and about driving her car, but still not herself. The xray technician showed up right as I was leaving, so Mikey took her down. Before I even got home, Mikey sent a picture of Kiley doing music and tea in the playroom.

Grampy came up around 11am and he has been tag teaming with Daddie throughout the day. Grampy brought some gerber grabbers and appleasauces and Kiley sucked them right down, but still wouldn't eat lunch. Here is Kiley and Grampy doing arts and crafts.

I will get more of the scoop when I get back to the hospital and post shortly. Hopefully Kiley is napping!
I just wanted to add one more thing. Presley just woke up from her nap and came into the office. She saw the picture above and she said "Hi Kiley" and waved. So sweet...
8:15am
We had an ok night. We were up about every two hours from midnight until 6am. Once for monitors, once for a poopy diaper and once because Kiley was cold. She really is sleeping pretty well in her crib given her IV and cords. It is mostly out of exhaustion I am sure. They came in for the blood draw around 6:20am. After poking her twice, they couldn't get even one whole vile of blood. So, sure enough around 7:25am, they came back in to poke her again. Mommy was not happy. I let Kiley lay with me after the trauma. She is acting like such a big girl and just lays right by me. So sweet. Right now, we are up and dressed and waiting on breakfast and the xray technician. I am sure they will get here at the same time. When I went to change Kiley's diaper this morning, it was completely dry. Please say a quick prayer that she will eat and drink a good breakfast. If she doesn't have a wet diaper soon, they will put her back on an IV.

Back in the hospital - Day 3

8:07pm
We took Kiley and Presley to the playroom and we did some arts and crafts. We all painted little wooden animals.

They played and had ice pops and drove the cars and ate crackers.

At 6pm, they had some dogs come to the playroom to visitnall of the kids.

They were the sweetest dogs and so fun to pet.

I think Presley might have a slightly skewed impression of what the hospital is....

Shortly after we left the dogs, Grammy and Grampy took Presley home. We tried to feed Kiley some dinner, but she still doesn't have much of an appetite. She only ate a couple of bites of applesauce for dinner and she still isn't wanting to drink too much. rested a little bit and then Marmee came to bring us dinner and visit. Marmee just left. Daddie pulled out my bed and Kiley is in her crib. We are going to attempt a decent night's rest tonight. Daddie has to go back to work tomorrow, so he is going home to get a good night's rest, so Mommy and Kiley are on our own tonight. I think our morning is going to start pretty early with a blood draw at 6am and a chest xray at 8am. Hopefully Kiley will get a good night sleep and wake up with a good appetite in the morning.

4:45pm
Presley is here and the girls are having a blast in the playroom.

We realized that the couch in the room did not pull out to a bed so we just got moved to 608D. Before Presley arrived, the "wound lady" came to look at Kiley's wound from her chest tube last week. I noticed when they were bandaging her up after they took this drain tube out, that those bandages were irritating the other wounds. She came and cleaned the wound and put bandages on them that will absorb all of the fluid to keep it from getting irritated. Poor Kiley was such a trooper. It had to have been so painful.

2:18pm
Kiley took a short nap. While she was sleeping, the cardiologist came in and said that the echo looked good and there was no fluid, so he gave orders to ake her drain out which is great news. The not so great news is that they want us to stay another couple of days and then they will do another echo to make sure the fluid doesn't come back. So it looks like the soonest we would get out of here will be Friday :-(. Shortly after the doctor left, the nurse practitioner came in to take the drain out. She said the pain should be minimal, so we opted not to give her any pain medication. Of course she cried through the whole thing, but we survived once again. Shortly after, her lunch came. She only ate two yogurts for breakfast and we didn't get much in her for lunch. Just some applesauce and a bite of yogurt. Gretchen brought Mommy some lunch and wanted to hold Kiley for a little bit. Then, Daddie took Kiley to the playroom and she did perk up some. She is still so tired, so we brought her back to the room and laid her down. Presley is going to come visit this afternoon!
We decided to go ahead and let Presley come visit. When Mikey and I went home to change yesterday, we woke Presley up from her nap a little early so we could see her before we came back to the hospital. The second I got her up, she was asking about Presley. I brought her downstairs and she immediately thought that since Mommy and Daddie were home, that Kiley must be home too. Presley asked where Kiley was and we told her that Kiley was sick and in the hospital and reminded Presley of Kiley's boo boo. The whole time we were trying to tell her this, she was searching the living room for Kiley. She looked behind the couch and even under the rug. I showed her some pictures of Kiley and she kept saying, "Kiley sick, Kiley boo boo". So needless to say, Presley is a little confused. We thought maybe if she comes to visit, she will have a better understanding of what is going on. She is just so out of sorts without Kiley. Mommy and Daddie leave sometimes, but Kiley is always with her. She doesn't know life without Kiley.
I will update on how Presley's visit goes. Right now, Kiley is sleeping on her tummy now that that drain is gone!

10:20am
We are in 609D now. The cardiologist did not get a chance to look at the echo yet, so she still has her chest tube and IV in. She was able to ride in the wagon up here, so she is still sitting in the wagon with a book watching Super Why. Here is a picture of Daddie taking her up!

She has her diapers!

8:48am
Well, we survived the dreaded second night. Barely as you can tell by my last post. Kiley slept on and off from about midnight until 7am. Only interruptions for meds and a few beeping episodes from the monitors. She seems to be doing pretty well this morning. After shift change, the nurse came in to take all of her vitals. Kiley seems hungry, so we asked for clearance to give her food. The nurse came back in and said that we can order her breakfast. She also said that they have requested another echocardiogram. If they see that she doesn't have any more fluid around her heart, they can possibly take the tube out and we might be able to go to the regular floor today. Good news!
As I was blogging, the guy came in to do her echo. Even though it isn't painful, it took 4 of us to hold her down and she cried through the whole thing. Hopefully they got good enough pictures. After they were done with the echo, the nurse informed us that she thinks Kiley's IV is bad. I think I would seriously lose it if they had to redo her IV yet again. Thankfuly there was just a kink in it and they were able to save it. All of this stuff, the vitals, the echo, and checking her IV are not painful, but Kiley is so scared of this place now that every time someone touches her she screams. It is so hard for Mommy and Daddie to hear, but we understand. She has been through so much.
Right now, we are waiting on her breakfast. We hope she gets some food in her and starts to get her energy back and her spirit. Just now, the nurse came back in and said that we are being transferred to room 609D. She isn't sure whether or not they will take the the drain out down here before we go upstairs or this afternoon or tomorrow. We have to wait for the doctors to look at the echo. We REALLY hope that she gets it out before we go upstairs because there is so much to do and play with up there and it will be harder for her to get around with the drain still in. The good news is that there hasn't been much fluid that we can see that as drained out over the last day.
Kiley's breakfast just got here so we are going to try to get some food in her. I will post as soon as anything changes.

12:05am
Well, the IV went awful. Once again, they poked her multiple times and she screamed for 30 minutes straight. I don't know how I (and poor Kiley) can take much more of this. I feel so bad that she has to go through this constant hurting and poking and prodding and choking down meds. I know it is late, it just feels never ending at this point. When they were doing the IV, one of the nurses put too much pressure on her chest tube and that came loose. Then once the IV was in, they of course had to hook it up. Then we thought they were done with the torture, oh but no, Kiley needs to take some disgusting Zantac. So now they are done and starting to close the doors and then oh wait, we need to take her temperature. Can we please leave my baby alone to get done sleep?? I know this is their job, but Kiley and Mommy are worn out. Hopefully we can get at least a half nights rest. Good night.

Back in the hospital - Day 2

10:24pm
Kiley started waking up around 5:40. She was still pretty restless and not feeling well. She fussed and slept on and off for an hour or so. She finally started waking up so we attempted meds again and this time she kept them down. About 30 minutes later, she had a sip of water and started to perk up a little. Here she is listening to some music.

Josh and Mycah came around 7:30 pm so we could get some dinner. When we came back, Kiley had drank a little more water and had perked up a little more. I can tell she is still pretty weak from no food, but they will still only let her have clear fluids, so no food yet.

The nurse and I gave Kiley a sponge bath. She is still so jumpy with anything the nurses do and doesn't want anything to do with them, so the bath wasn't as fun as it is at home. She cries every time the nurse touches her. After the bath, the nurses needed to change the bandage over the chest tube and that was quite an ordeal. Peeling the old one off, cleaning the area (which by the way is right over where her other chest tube incision is, so it is multiple wounds) and very painful for them to clean. Once the new bandages were on, we took Kiley out of bed and the nurse let her pick a new toy out and of course Kiley picked a book. In addition to a new toy, Kiley also got to go for a ride in the wagon.

She got very relaxed.

Now we are to the present. We were hoping to come back to the room and get Kiley hooked back up to her monitors and try to get some rest. Of course things can't go so smoothly. When the nurse tried to hook her IV back up, she realized the IV had cone out of her vein and the fluid was going into her tissue. So that means that they have to take the IV out and put a new one in. We are so sad to have to put Kiley through more trauma and more needle poking. The nurse just put some numbing cream on her hands that will hopefully work better than last night and hopefully she doesn't have to stick her more than once :-(. The nurse will be back in at 11:30 to do another IV. My sweet baby.

4:45pm
Mikey and I are back at the hospital and Kiley is sleeping.

Unfortunately she did not sleep the entire time we were gone. Mom said about 15 minutes after we left, she started getting very restless. She was very uncomfortable for about 45 minutes where she would doze off then wake up and whine. Then she started vomiting. Poor Mom was in her by herself :-(. Kiley threw up all over her gown, sheets and even her lovey :-(. The nurse gave her some anti nausea medicine via IV and that seemed to have helped. Grammy and Grampy came up and they said Kiley was awake for a little while. She was pretty alert but still not herself. She fell back asleep and that is where we are now. I just talked to the nurse and she said that if she does wake up, we will maybe start with some water. It is time for her dose of lasix and we are going to see if she can give it to her through her IV so we don't upset her tummy again. Please say a quick prayer that when Kiley wakes up, her little tummy will feel better.

3:37pm
Mikey and I spent some time with our sweet Presley and now we are heading back up to the hospital. We will let you know if Kiley is awake when we get there!

12:46pm
She is still sleeping so peacefully..

The nurse just tried to give Kiley some Motrin and she threw it right up :-(. She fell back asleep, so we are hoping she can sleep off the nausea. Marmee is coming to relieve us and Mikey and I are going to get some lunch and take showers. We will send an update as soon as we have one.

9:40am
We got to go back in the room shortly after the surgeon came out. Everyone reassured us that she did well. She is still sleeping. It is probably a mixture of the sedation and her lack of sleep last night. She looks very peaceful.

7:48am
The surgeon just ame out and said she did great! She said she drained 90cc (3 ounces) of fluid. She said they are cleaning her up and she should wake up soon. Thank you for your prayers. We hope this will a much more quick recovery.

7:07am
They did the the echocardiogram around 645am so the surgeon could confirm where the fluid is to make sure she can do the procedure. She did confirm that she can get to the fluid through a hole below the breast bone. Mikey and I stayed in until she was sedated and then we left. There were about 10 doctors and nurses in the room all with masks on ready to operate.

It was very intimidating and just goes to show how strong Kiley is. It wasn't very fun to hear them say "do you have xxxx, just in case?" over and over again. The procedure should last about an hour. Please say a prayer that it goes as smooth as possible and that she wakes up ok.

Last Night
Last night, Kiley fell asleep around 11:30pm. Daddie went to get us dinner. By the time he came back and ate his half, Kiley was asleep, so I just stayed with her. At around 240am, the nurse came in to give Kiley motrin. She also put an extension on her IV to get ready for surgery. We slept on and off over the next few hours. The good news is that Daddie got to sleep in the room with us since I was in bed with Kiley. We woke up around 615am. They were in soon after to start prepping Kiley for surgery.

Our poor baby is back in the hospital.

10:15pm
Unfortunately the silliness is over. The doctor came in around 9pm and had us sign the consent forms. The surgery doesn't seem as routine as I originally thought. It is so hard to hear all of the risks and then sign the papers. PLEASE, PLEASE, PLEASE say extra prayers for her surgery in the morning. After the papers were signed, Kiley and I had some good cuddling time in bed. We played with our hair and read books. At about 10pm, the nurses came in to do Kiley's IV. This has never been a good experience in the past and this time was no different. They had to poke her two different times before they found a good vein and then it was another 15 minutes of drawing her labs, hooking up the IV, taping it up and flushing it out in which Kiley screamed the entire time. All I could think about is that my sweet baby should be at home peacefully sleeping in her own bed and not going through this. Such a helpless feeling. She is so incredibly tough. Kiley and Mommy having some cuddling time.

Right now, she is listening to music with Daddie. The nurse is about to come back in to hook up the rest of her monitors and then she will start giving her fluids in the IV at 11pm. Hopefully after she is all hooked up, I will be able to lay with her and let her fall asleep in my arms.

8:04pm
The doctor decided not to do surgery until in the morning, so they will do it here in the ICU at 7am. Kiley rocked with Marmee for a while and has been pretty low key. Marmee went home and Daddie fed Kiley some dinner and now she has perked up. She is being her silly self. Right now, she is playing on her laptop while Marmee blogs.

She can't have anything to eat or drink after 11pm. They will do an IV some time before then. Please pray that Kiley has minimal pain during the IV and that the three of us get some rest tonight. They will be monitoring her heart throughout the night and will be taking her vitals every 4 hours. We will post if anything changes. Thank you for your additional prayers for us.

5:40pm
As of now, we have been admitted back into the ICU and they are monitoring Kiley. We still do not know if the surgery is going to be tonight or in the morning. The doctor will be here around 7pm and we should find out more then. Mikey went home to pack our bags and Marmee is here with us. Kiley and I are laying in bed watching Tangled.

We had kiley's checkup with the cardiologist and after her EKG and Echocardiogram, they found a significant amount of fluid around her heart. We are being admitted back into the ICU and she will go back into surgery to drain the fluid. This is so not what we expected since she seemed to be doing so great. Our poor baby has to get another chest tube put back in. We are thankful that they found the fluid early enough, but we are so sad to put her through more pain. Please say a prayer for her that she will get through this with as minimal pain as possible.
Kiley at the cardiologist waiting for the doctor to come back in.

They are admitting her right now. They have to wait at least 4 hours from the time she last ate before they do the surgery so as of now it will be at least 5pm. We will be in ICU another day or so until they can take te tube out and then we will go to the pediatric floor for monitoring. I will post once we know more.

We are home!!!

I would first like to thank everyone for all of your love, support and prayers that you have had for our family over the last few days. Hands down, it is the most difficult few days of my and Mikey's life and we know that our strength came from The Lord and our wonderful support system that we have with our friends and family. So, because of all of your prayers, we got to bring Kiley home on Sunday. She was home and in her bed for her afternoon nap and it was wonderful. We are so glad to be home.

After the girls went down for their nap, Mikey and I just sat on the couch and stared at each other. We had such a mix of emotions. We have never felt that level of stress and exhaustion all at once. I think we were both in shock of what had happened over the last few days and that we had survived it. Many people have said to us: "I don't know how you guys are doing this", and the truth is, we don't either. I strongly believe that God doesn't give you anything you can't handle. And when you are put in a situation as extreme as this, you just do it. Especially when it has to do with your child and you have to be the strong one, you just do it. People have also said, "I can't imagine", and my response to them, was "don't". Seeing Kiley lying in that bed in pain and not being able to make her feel better was the single worst experience of my life and I don't wish it upon anyone. I believe in prayer and I believe even more that prayer in numbers is powerful. It was a very tough time for us and we got through it. I know we cannot even begin to count how many people we had praying for us the day of surgery and the days following, but I know that the power of prayer came through and we all survived and I cannot be more thankful that this is behind us!

Enough rambling...Kiley is getting better and better every minute. Believe it or not, she is only on two medications! IB Profen to prevent inflamation and another medication called Lasix to reduce the amount of fluid in her body. I am in awe of how amazingly strong she is. She has an incision and a broken chest bone, and she is only taking Advil. It is a true miracle. She is our little miracle!

We weren't sure what to expect post-surgery, but she is pretty much just going on with her business...playing as usual. Mommy and Daddie are nervous about her falling or sister pushing her down, or her climbing on the furniture, but we are parents and we have to worry about something. We already see changes in her. A lot of them are hard to describe, but she seems more mature and more energetic! Her heart has been working overtime for 3 1/2 years and now it isn't. It is so amazing!

Blogger will not let me post video's, but we have a video of her dancing on Sunday evening after dinner. I can't help but think back to the first picture that I posted of her right out of surgery. And just 4 (LONG) days later, she is dancing. If you want to see the video, let Mikey or I know and we can email or text it to you. You wouldn't believe it unless you saw it!

Marmee and Guy are still staying at the house with us and they are a huge help. Grammy and Grampy have been coming over also. We couldn't have done it without any of our family here by our side. In fact, last night, Kiley kept going from person to person, giving each person a hug. It was the sweetest thing! It was like she was thanking everone for taking care of her over the last few days. Her hugs are worth a million bucks!

I would also like to thank everyone who brought us meals in the hospital and here to the house and also who is still planning on bringing meals. It has been a huge help not having to worry where our next meal is going to come from :-). Especially since we didn't expect to be "chasing" Kiley around the house all day making sure she doesn't hurt her incision :-). What a great problem to have :-).

Last night, I was able to give Kiley a bath and wash all of the "hospital" off of her. We have to be very careful around her wound and she still has a lot of bruises and stickiness from all of her IV's and blood draws, but you would never know. She was like a whole new girl all clean and beautiful hair flowing!!

I also finished all 4 days of blogging in the hospital. I corrected a few typos (I was delirious) and added some more pictures! I will post more on her progress again soon!

Kiley's Open Heart Surgery Updates - Day 4

12:48pm
We are going home!!!!!

8:04am
Sorry for going so long without an update. After we got back to the hospital, our little Kiley girl is back and she is on the go! Marmee and Guy stayed with her while Daddie and I went home to get some rest. This is Marmee's "summary" of the day: Rocked Kiley to sleep from 11 am to approx.. 12:45 pm. Full of energy so she walked around the hospital. Lunch at 1:30 pm creamy mac n cheese and applesauce, they forgot the yogurt. Lots more walking and then packed up to move to room 632D. The room was small and had a bed so requested a crib. Asked if a larger room was possible so there would be more room for mommy and daddy to sleep. Guy took Kiley walking and she was full of energy. They played in the playroom and we asked for Mickey Movies. Moved into room 624D and rocked Kiley to sleep from 3 to 5. She woke up a happy girl and changed a very wet diaper. She drank 2 cylinders of water and then had a solid “BM”! We turned Mickey on and she played in her crib and you know the rest! This is a picture of Kiley right when we walked in!

She was driving her car around and going all over the place!

We have to kind of hover over her when she walks, so we are busy busy!
The "poopy news" was good because that is one of the criteria for her to go home! Michael, Katie, and Charlotte Belvin came to bring us dinner and visit and then Mycah and Josh came to visit too!

Now that we are out of ICU, our room is so much better! It is bigger, we can have more visitors, we have a bathroom in our room, and we both get to sleep in the room with Kiley! We feel like we are at a 5 star resort (a very expensive resort ;-))! As soon as Mycah and Josh left, we put Kiley down. She was asleep by 8:30pm! The nurse came in at 10pm to give her motrin. We refused the motrin because we didn't want to wake her, so the nurse just hooked her up to the monitors and she didn't even flinch. They came back in at midnight to take her vitals and she slept through those too! At 3:30am, they came in to do vitals again and she kind of woke up so we decided to go ahead and give her motrin and change her diaper. She was kind of awake after all that, so we put her in bed with us. After she fell back asleep, we put her back in her crib. Then, at 6am, they came to draw her blood. We read her a book and she did awesome! She laid back down and went back to sleep! Then we were woken up at 8am to go get a chest xray. Kiley had another poopie diaper! Kiley is ready to get up for the day!

Daddie took her to get her chest xray and I ordered her breakfast. They just came back and she is having her breakfast! She is doing so great! We couldn't be happier! AND, we all 3 got a decent night sleep! We are on the road to recovery. We are still hoping to maybe get discharged today. The nurse said as long as they aren't doing anything for her that we can't do at home, hopefully we will get to go home! She also said her bloodwork looked great! Thank you for your continued prayers! We will post again soon!

Kiley's Open Heart Surgery Updates - Day 3

4:30pm
Mikey and I finally got some rest. My body is programmed not to sleep during the day, but at least I did rest. We have showered and will head back down to the hospital shortly. While we were gone, Kiley got moved to the pediatric floor. Mom said the room was so small that neither of us would be able to spend the night, so she requested that we be moved. They also requested a crib for Kiley, so hopefully tonight we won't have to worry about her climbing or falling out of bed like last night. Mom said Kiley has been eating great and walking all over the place. There is a playroom on the floor that she has been playing in since she got up there. Unfortunately, it closed at 3pm today and is closed tomorrow, so I am going to take some fun things up to Kiley to keep her busy over the next day. I am really hoping that we will get to come home tomorrow. Fingers crossed. If anyone is wondering, we are in room 624. If you are unsure of the hospital we are in, text me and I will let you know. Kiley is now sleeping, so hopefully we can play some more when we get to the hospital and then all get back on track and sleep tonight! I will update again soon.

11:22am
Mikey and I just came home to get some rest. When I got back to the room, Daddie was already feeding Kiley. She ate scrambled eggs, yogurt, applesauce and a banana! She was a very hungry girl! Daddie also took her to walk through the halls. She is extremely exhausted, but she was walking great! Right before we left the hospital, they came by and did an echocardiogram. He said that everything looked great. There wasn't any fluid around the heart or lungs and no leaks in the patch. All very good news. Hopefully Kiley can get some rest while Mommy and Daddie are gone. She is in good hands with Marmee and Guy. Grammy and Grampy just took Presley to McDonalds so we can lay down. Please pray for Mommy, Daddie and Kiley to get some rest over the next couple of hours.

9:08am
I am sitting in the waiting room eating breakfast after one of the hardest nights of my life. After my last post, Kiley did wake back up, so I fed her some Mac n cheese. I was hoping she would go back to sleep after getting something in her tummy, but that did not happen. The good news is that her shakiness went away, but the bad news is that it was the start of a rough few hours. She would try to lay still and fall asleep and then she would just cry and cry and toss and turn and thrash and pinch and hit. At around 2:30, they came in to do another chest xray. The nurse also took out the IV in her left foot because it stopped working. Then she gave Kiley another sponge bath and cleaned her wound. Since she only has one IV left, they came in at 3am to draw blood for some tests which consisted of more needle poking. After all of that was done, she literally cried from 3am until 6am nonstop. It is so hard not knowing what was hurting her, much less,not being able to make her feel better. What I do know is that Kiley has a very high tolerance for pain and something was definitely hurting her. My only two guesses were that her chest tube was bothering her, or she was having gas. Either way, the nurse gave her multiple doses of medication to try to calm her down and nothing helped. There were several times where I thought she was going to pull the chest tube out (which would have been very bad). At about 5:45am, the nurse could tell I needed a break, so she loaded Kiley up and took her for a wagon ride.

We were hoping maybe a change of scenery from the bed would help. She brought Kiley back a little after 6am and I got in bed with her and held her in my arms and she finally fell asleep! At about 6:20am, they came in to remove her chest tube. I hated waking her up, but I was so relieved to get the chest tube out. Kiley did so well. Not even a peep...again, very high tolerance for pain. Theybremove the tube and then stitch her up. Once she tried to go back to sleep again, the crying started again. It wasn't quite as intense, I think by this point it was pure exhaustion. We finally both fell asleep from about 7am to 8am, but that is the extent of my and Kiley's sleep in the last 8 hours. Needless to say, we are both exhausted. One of her doctors came in around 8:30 to check her vitals and told us that we are getting moved to our own room on the pediatric floor today, so that was good news. That is one step closer to going home. The heart rehab team also came by to help Kiley try to walk, but she is so exhausted, they didn't have much luck.

They are going to send the physical therapy team to come work with her. Thank you for your continued support and concern. Please continue to pray that Kiley and I get some rest today and that she stays as pain free as possible, and that whatever had her in so much pain throughout the night will stay away and never come back. I ordered Kiley breakfast, so I am going to head back to the room to see if it is there and get her fed.

1:54am
We had some more visitors, Ben and Meredith Fox, around 8:00pm last night. Kiley was pretty alert when they were here. She watched Baby Einstein and interacted with them a little bit. They left around 8:30pm and she went back into a restless sleep until about 9:00pm, and then She finally settled down. Marmee and Guy left around 10:00pm. Kiley and Mommy both slept from about 10:00pm until 1:00am. Kiley woke up pretty shaky. It is probably partially from the meds and partially hunger, so I gave her some saltine crackers. She ate almost 6 of them, chewing like a very big girl. Daddie just went out to the waiting room to make her some Mac n cheese. She just laid back down with her juicy, so if she wakes back up we will try to get some Mac n cheese in her.

Kiley's Open Heart Surgery Updates - Day 2

7:28pm
In addition to my last update, Kiley ate mashed potatoes and gravy, a yogurt, and some more applesauce. I think it is safe to say that her appetite is back. She is becoming more active now. Sitting up and trying to rollover and get out of bed. All of her wires keep getting tangled up. Even though there are less of them, they are hard to keep straight because she is moving around so much. She even had a little bit of blood come from her chest tube, but the nurse said that was ok. She is still pretty drugged up so she falls asleep but it is still a restless sleep. Marmee read her a couple of books in between eating and sleeping and now she is sleeping again.
In the meantime, Presley has been playing dress up at home. Our neighbors brought her over some dress up stuff and she is having a ball.

Look at all of those bracelets!

5:23pm
As soon as Mikey and I got back to the hospital, we saw our sweet angel sleeping peacefully.

She had some visitors while we were gone and she got some stuffed animals and some beautiful flowers.

Shortly after we were there, she woke up. And guess who is back?? Our Kiley girl!! She pointed to Baby Einstein on the TV and smiled and got excited.

It was the best feeling for all of us. She drank more water and then she ate two applesauces!

Kiley's homemade sippy cup.

Eating applesauce.

She is ready to get her strength back and ready to get out of bed. We tried to let her stand up but she wasn't quite ready for that yet. Over the next hour she started getting pretty restless, so the nurse gave her some medication to calm her down. Since she was already restless, the nurse went ahead and took out the IV on her left shoulder!! One less thing! Once the medicine hit her, I gave her her juicy and she finally settled down. I went ahead and ordered her dinner (yogurt, applesauce, ravioli and mashed potatoes). Hopefully she will eat some more when she wakes up!

3:03pm Mikey and I had lunch around 12:15pm. When we got back from eating, the music therapist was there. Kiley smiled for the first time! She sang and played the guitar for Kiley!

Kiley loves music!! Since she was so content with the music, Mikey and I decided it would be a good time to sneak out to run home so I could shower. I am all showered and ready for another night at the hospital with my sweet baby! I just called Grampy to check in and he said Kiley is still in and out of sleep, but she did drink some water, so that is a great step! Also, while I was home, I updated this post and yesterday's post with pictures. I understand if it is hard to look at the pictures, but we wanted to be able to show Kiley where her scar came from and how brave she was! Mikey and I got to see Presley and Buddy before we left!

We are heading back to the hospital and I hope to have an update when we get back!

12:28pm
The nurse took Kiley's catheter and one of her IVs out around 11:05am. Kiley is trying to wake up but she is still extremely tired. The medicine is making her itch, so she keeps scratching her face. Luckily Daddie gave her a manicure before we came to the hospital. The nurse also took off her oxygen and it has been staying at a safe level this time. The biggest treat of the day so far is that I finally got to hold my baby.

She wakes up and is quite skirmish, but it is so great to be able to rock her to comfort her.

It is going to take a lot of discipline for us to learn not to pick her up under the arms. Our next goal is for her to wake up enough in order to drink some water. The nurse is no longer giving nutrients through an IV, so she needs to start eating and drinking to keep her strength up! Please pray for Kiley to drink some water.

9:35am
The nurse just came in and turned the Precedex off so that she will start to wake up more. They are going to take her catheter and two of her IVs out today. They also want her to start eating and drinking. The heart rehab team is also going to come up to help Kiley try to start walking with the walker. I will update as she hits these milestones. 9:09am
Kiley is still in and out of sleep. I was able to go out for a quick run to try to wake up my sleepy eyes and get some breakfast. At about 8:30, the nurse gave Kiley Tylenol by mouth. This is the first substance she has had by mouth since before surgery, so we are praying her little tummy can handle it and she keeps it down. So far so good. Also, she is off of the blood pressure medicine and her blood pressure has stayed down! Soon they will start to reduce her Precedex which is the medicine that keeps her relaxed in order to help her start to fully wake up. I will post more once there are any changes.
In the meantime, Presley got to go to Target with Marmee. Look what she got!! I think she is having a pretty good time!

6:15am
Thank you for your prayers. Kiley had a very good night. Daddie sat with her for a while after I laid down. I think I fell asleep around 9:30 or so and slept until 2:15am! It felt amazing! At 2:15am the nurse gave Kiley pain meds for the first time in 4 hours! Throughout the night, she was finally sleeping more peacefully with her eyes closed. God was taking good care of her.

They came in and did a chest xray at 2:30am and then the nurse gave her a sponge bath around 2:45am. The nurse took off two more wires (yah) and she also removed the bandage over her incision.

It looks great! It is about the length of my index finger. We were so surprised at how small the incision was! Mikey was very excited to wake up to that good news early this morning!

Throughout all of this action, she did great, just minimal crying here and there. She is so tough!

After all the action, I tried to lay back down and just as I did, she started crying. I looked up and she had turned over and was on all fours! She was trying to get out of bed! The nurse gave her some more medicine to relax her so there are no more incidents like that one. Daddie went home about an hour ago to get some rest since only one of us could sleep in the room. (The waiting room accomodations aren't that great for sleeping) As of now (6:43am), Kiley is starting to actually wake up from the anesthesia which is what they want her to do. She is whining, but doesn't seem to be in too much pain. I am comforting her as best as I can. Please say prayers for Kiley today that she will wake up feeling ok and we hope to get more of the needles and tubes out today. I hope to go home this afternoon to shower and freshen up. I will post some pictures throughout my updates and definitely keep everyone updated throughout the day on her progress!